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HOARDING: AN INTERPRETATIVE PHENOMENOLOGICAL ANALYSIS OF PARTICIPATION IN DAILY OCCUPATIONS IN A CLUTTERED ENVIRONMENT
(Pelletiere, 2015)
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HOARDING: AN INTERPRETATIVE PHENOMENOLOGICAL ANALYSIS OF PARTICIPATION IN DAILY OCCUPATIONS IN A CLUTTERED ENVIRONMENT
Vicky Annette Millanta
This thesis is submitted in fulfilment of the requirements for the degree of
Master of Science (Honours) Health Science
School of Science and Health
Western Sydney University
March2017
Primary supervisor: Dr Rosalind Bye
Director of Academic Program – Occupational Therapy
School of Science and Health
Western Sydney University
Associate supervisor: Ms Karen Arblaster
Manager Allied Health, Wellbeing, Children and Families
Nepean Blue Mountains Local Health District
Conjoint Lecturer, School of Science and Health
Western Sydney University
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Dedication
I would like to dedicate this thesis to two influential women in my life.
Norma Albornoz. I would not be where I am today without having you in my
life. You have been my manager, my colleague, and my friend. Through thick
and thin you have encouraged and nurtured me at work, with my studies and
supported me no matter what.
Karen Arblaster for agreeing to be my supervisor and now my manager. Thank
you for taking this journey with me from the very start to the very end. Through
the highs and the lows, the laughter, and the tears. I couldn’t have done it
without you.
From the bottom of my heart I could never thank either of you enough for your
support and guidance and helping me cope with the emotional roller coaster of
the past five years has been.
In loving memory
To all my grandparents who are now God’s angels
I miss you
To Nanna Parsons who was always worried I never finished high school
I hope I make you proud
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Acknowledgements
The completion of this research would not have been possible without many
people in my life. I would like to acknowledge and pay tribute to the six
participants for agreeing to be a part of my research. They opened their hearts
and their homes. They let me in and shared their incredible life stories with me.
Throughout the past five years I have been lucky to have three wonderful
primary supervisors (even if I didn’t feel lucky each time I lost one and I gained
a new one) to support and guide me during my research.
Julia Bowman for agreeing to be my first primary supervisor and encouraging
me to take this journey that I wasn’t sure I was ready for.
Rebecca Olsen for agreeing to be my second primary supervisor and stepping in
just in time to impart your knowledge and expertise and helping me sort out the
methodology.
Rosalind Bye for agreeing to by my third and final primary supervisor and
seeing this thesis through to the end with me.
I would like to say thank you to my husband Karl and my family and friends for
taking this journey with me. It has been difficult for all of us, but the light at the
end of the tunnel has finally shone through.
I would also like to acknowledge the two Local Health Districts I have worked in
during the time, for their support that helped make this study and thesis
possible. Especially my colleagues for listening and being a sounding board.
Thank you to each and every one of you.
To my best friend, Angela. There is always hope. You just need to stay away from
the shops!
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Statement of authentication
The work presented in this thesis is, to the best of my knowledge and belief,
original except as acknowledged in the text. I hereby declare that I have not
submitted this material, either in full or in part, for a degree at this or any other
institution.
………………………………………………….
Vicky Millanta
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“IT ALWAYS SEEMS IMPOSSIBLE UNTIL IT’S
DONE”
Nelson Mandela
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Table of contents
Table of contents ------------------------------------------------------------------------------------------------------------ i
List of tables ------------------------------------------------------------------------------------------------------------------ iv
List of figures ----------------------------------------------------------------------------------------------------------------- iv
List of presentations ------------------------------------------------------------------------------------------------------- v
Key terms ---------------------------------------------------------------------------------------------------------------------- vi
Abstract ----------------------------------------------------------------------------------------------------------------------- viii
Chapter 1 Introduction--------------------------------------------------------------------------------------------------- 1
1.1 Research Background ------------------------------------------------------------------------------------------- 1
1.2 Research gaps ------------------------------------------------------------------------------------------------------ 3
1.3 Research aims ------------------------------------------------------------------------------------------------------ 4
1.4 Research questions ----------------------------------------------------------------------------------------------- 4
1.5 Scope of the research -------------------------------------------------------------------------------------------- 4
1.6 Summary and thesis overview -------------------------------------------------------------------------------- 5
Chapter 2 Literature review ------------------------------------------------------------------------------------------- 6
2.1 Introduction -------------------------------------------------------------------------------------------------------- 6
2.2 A brief look at the history of hoarding: From miserly wealth to mental illness ---------------- 7
2.3 Research that underpins the diagnosis of Hoarding Disorder in the DSM 5 -------------------- 10
2.4 It is not just cleaning up the mess: Insight, motivation and intervention ----------------------- 14
Insight ------------------------------------------------------------------------------------------------------- 14
Motivation ------------------------------------------------------------------------------------------------- 15
Interventions --------------------------------------------------------------------------------------------- 17
2.5 Hoarding behaviour: The lived experience --------------------------------------------------------------- 19
2.6 Taking an occupational perspective to the lived experience of hoarding ----------------------- 22
The importance of occupation in people’s lives ----------------------------------------------- 23
Occupational therapy ---------------------------------------------------------------------------------- 25
Occupational Therapy in Mental Health: Occupation and Recovery ------------------- 28
2.6.3.1 Occupation and Occupational Therapy -------------------------------------------------- 28
2.6.3.2 Occupation and Recovery -------------------------------------------------------------------- 30
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2.7 Summary ----------------------------------------------------------------------------------------------------------- 32
Chapter 3 Methodology ------------------------------------------------------------------------------------------------- 34
3.1 Introduction ------------------------------------------------------------------------------------------------------- 34
3.2 Theory --------------------------------------------------------------------------------------------------------------- 34
3.3 Research Design -------------------------------------------------------------------------------------------------- 34
Interpretative phenomenological analysis ----------------------------------------------------- 35
3.4 Research Methods ------------------------------------------------------------------------------------------------ 37
Recruitment ----------------------------------------------------------------------------------------------- 37
Data collection -------------------------------------------------------------------------------------------- 41
Data Analysis --------------------------------------------------------------------------------------------- 43
3.5 Quality of the research ----------------------------------------------------------------------------------------- 46
Sensitivity to context ----------------------------------------------------------------------------------- 46
Commitment and rigour ------------------------------------------------------------------------------ 47
Transparency and coherence ----------------------------------------------------------------------- 47
Impact and importance -------------------------------------------------------------------------------- 48
3.6 Ethical Considerations ------------------------------------------------------------------------------------------ 48
Third party recruitment and dual relationships ---------------------------------------------- 48
Participant information and consent ------------------------------------------------------------- 49
Harm or discomfort to participants --------------------------------------------------------------- 49
Managing the collected data ------------------------------------------------------------------------- 49
3.7 Summary ----------------------------------------------------------------------------------------------------------- 50
Chapter 4 Research Results ------------------------------------------------------------------------------------------- 51
4.1 Introduction ------------------------------------------------------------------------------------------------------- 51
4.2 Clutter and relationships and the relationship with clutter ----------------------------------------- 52
A relationship with clutter: The link between the past and present ------------------- 52
“I’m a collector”: Clutter and identity ------------------------------------------------------------- 64
Relationships strained by clutter: Shame, guilt and isolation. --------------------------- 67
4.3 “I may look like I’m doing nothing but really, I’m super busy”: The efforts of everyday life --
----------------------------------------------------------------------------------------------------------------------------- -----70
Getting things done ------------------------------------------------------------------------------------- 70
Finding things in the mountains of clutter: “You need a… homing pigeon device”:---
---------------------------------------------------------------------------------------------------------------------------75
Making decisions about the stuff of life ---------------------------------------------------------- 77
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Routines and Procedures ----------------------------------------------------------------------------- 79
Getting help ----------------------------------------------------------------------------------------------- 81
4.4 Organised disorganisation: Adapting the environment to get things done --------------------- 83
Isolated pockets of organised spaces ------------------------------------------------------------- 83
Relocating tasks and resources --------------------------------------------------------------------- 96
4.5 Summary ----------------------------------------------------------------------------------------------------------- 98
Chapter 5 Discussion and conclusion --------------------------------------------------------------------------- 100
5.1 Introduction ----------------------------------------------------------------------------------------------------- 100
5.2 Summary of research findings and discussion in relation to the literature ------------------ 100
What is the lived experience of living in a cluttered environment and managing to
complete daily occupations? ----------------------------------------------------------------------------------- 101
How do hoarding behaviours and living in a cluttered environment impact on
participation in daily occupations? -------------------------------------------------------------------------- 105
What strategies do people put in place to manage participation in daily
occupations when living in a cluttered environment? ------------------------------------------------ 107
Summary ------------------------------------------------------------------------------------------------- 110
5.3 Implications of findings -------------------------------------------------------------------------------------- 111
Implications for occupational therapy practice --------------------------------------------- 111
Creating alternate occupational identities ---------------------------------------------------- 111
Occupation-focused recovery --------------------------------------------------------------------- 112
Implications for policy/guidelines -------------------------------------------------------------- 114
Implications for theory ------------------------------------------------------------------------------ 115
Implications for education ------------------------------------------------------------------------- 116
5.4 Future research ------------------------------------------------------------------------------------------------- 116
5.5 Limitations of this study ------------------------------------------------------------------------------------- 118
5.6 Conclusion -------------------------------------------------------------------------------------------------------- 120
Reference List --------------------------------------------------------------------------------------------------------------- 121
Appendix 1: Research information sheet for clinicians --------------------------------------------------------- 130
Appendix 2: Introduction letter for support from external agencies to recruit ------------------------- 132
Appendix 3: Advertisement for participants ----------------------------------------------------------------------- 134
Appendix 4: Letters of support for recruitment ------------------------------------------------------------------- 135
Appendix 5: Participant consent form ------------------------------------------------------------------------------- 137
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Appendix 6: Participant information sheet------------------------------------------------------------------------- 138
Appendix 7: Semi-structured interview guide --------------------------------------------------------------------- 142
Appendix 8: Ethics approval -------------------------------------------------------------------------------------------- 143
List of tables
Table 1: The domains of occupational therapy ................................................................ 27
Table 2: Participant profile…………………………………………………………………………...40
Table 3. Super-ordinate themes and themes across cases .......................................... 51
List of figures
Figure 1 – Under the window in Patricia’s house…………………………………………...53
Figure 2 – John’s yard ................................................................................................................ 55
Figure 3 – Marcus’ dining area ............................................................................................... 57
Figure 4 – Items in Gillian’s kitchen waiting to be recycled ....................................... 59
Figure 5 –Allison’s dining table covered in clutter ......................................................... 61
Figures 6 – Noah’s lounge room............................................................................................. 63
Figure 7 – Noah’s lounge room............................................................................................... 63
Figure 8 – Allison’s Hallway .................................................................................................... 72
Figure 9 – One of the rooms in Marcus’ house. ................................................................ 73
Figure 10 - Allison’s Kitchen .................................................................................................. 74
Figure 11 – Noah’s backyard ................................................................................................... 76
Figure 12 – Marcus’ display case ........................................................................................... 84
Figure 13 – Gillian’s bed and bedroom ............................................................................... 86
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Figure 14 - Gillian’s kitchen ..................................................................................................... 87
Figure 15 - Allison’s organised room off the lounge area. .......................................... 89
Figure 16 - A close up of a drawer revealing clear organisation of items ............. 90
Figure 17 – A cupboard in Allison’s organised room off the lounge area .............. 91
Figure 18 – Hanging space for childrens clothing in Allison’s organised room off the lounge area. ............................................................................................................................ 92
Figure 19 – A close up of another drawer showing children’s clothing in Allison’s organised room off the lounge area. .................................................................................... 93
Figure 20 – Shelves outside the door of Allison’s Laundry ......................................... 94
List of presentations
Millanta, V., (2015). Hoarding: A phenomenological study of participation in daily
occupations in a cluttered environment. Occupational Therapy Australia 26th
National Conference & Exhibition. 1-3 July, 2015. Melbourne: Melbourne
Convention and Exhibition Centre.
Millanta, V., (2016). Hoarding: An interpretative phenomenological analysis of
participation in activities of daily living in a cluttered environment. National
Hoarding and Squalor Conference. 29-30 June, 2016. Sydney: Rydges World
Square.
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Key terms
Activities of Daily Living (personal): Activities oriented towards care of one’s
own body. These activities are fundamental to living in a social world; they
enable basic survival and well-being. For example, bathing, going to the toilet,
dressing, eating, personal hygiene and grooming (American Occupational
Therapy Association (AOTA), 2014, p. 7).
Activities of Daily Living (Instrumental): Activities to support daily life
within the home and community that often require more complex interactions
than those used in ADLs. For example, care of others, financial management
driving, communication, meal preparation and cleaning up, shopping, home
management and maintenance (American Occupational Therapy Association
(AOTA), 2014).
Activity Limitations: These are the difficulties an individual may have in
executing activities (World Health Organization, 2001, p. 17).
Cluttered environment: A collection of things lying around in an untidy state
in the surroundings or conditions in which a person lives and in which paricular
activity is carried out (Oxford dictionary of English, 2010).
Environmental Factors: These make up the physical, social and attitudinal
environment in which people live and conduct their lives (World Health
Organization, 2001, p. 17).
Hoarding: “(i) the acquisition of, and failure to discard a large number of
possessions that appear to be useless or of limited value; (ii) living spaces
sufficiently cluttered so as to preclude activities for which those spaces were
designed; and (iii) significant distress or impairment in functioning caused by
the hoarding” (Frost & Hartl, 1996, p. 341).
Hoarding behaviour: The way in which one acts or conducts oneself (Oxford
dictionary of English, 2010) in relation to the acquision of and failure to discard
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a large number of possissions from the living environment (Frost & Hartl,
1996).
Impairment: Problems in body functions and structures due to a deviation or
loss rather than the underlying pathology itself (World Health Organization,
2001, p. 17).
Occupation: The things that a person does that occupies their time and
attention, that have meaning and value to an individual, and are central to a
person’s identity and sense of competence including; activities of daily living,
instrumental activities of daily living, rest and sleep, education, work, play,
leisure, social participation (American Occupational Therapy Association
(AOTA), 2014).
Occupational therapy: The therapeutic use of everyday life activities and
occupations with individuals or groups for the purpose of enhancing or enabling
participation in roles, habits, routines, and rituals in home, school, workplace,
community, and other settings. Occupational therapists use their knowledge of
the relationships between the person, his or her engagement in valued occupa-
tions, and the environment to design occupation-based intervention plans that
facilitate change or growth in client factors (values, beliefs, and spirituality,
body functions, body structures) and performance skills (motor, process, and
social interaction) needed for successful participation. (American Occupational
Therapy Association (AOTA), 2014).
Participation: “Involvement in life situations”(World Health Organization,
2001, p. 10). Participation naturally occurs when people are actively involved
in carrying out occupations or daily life activities they find purposeful and
meaningful (American Occupational Therapy Association (AOTA), 2014).
Participation Restrictions: These are the problems an individual may
experience in involvement in life situations (World Health Organization, 2001,
p. 17).
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Abstract
Occupations are the things that people need to and choose to ‘do’ every day. For
a person with hoarding behaviours, the important occupation is collecting what
they feel is valuable to them and storing the objects in their chosen
environment. Despite this focus on collecting, individuals with hoarding
behaviours still need to engage in other day-to-day occupations in the home and
community. With up to 5% of the world’s population living in a cluttered
environment (Frost, Steketee, Tolin, & Renaud, 2008; Grisham, Norberg,
Williams, Certoma, & Kadib, 2010; Tolin, 2011), it is critical to better
understand these individuals’ daily lives and how they engage in tasks and
perform activities that make up their daily occupations.
To date research on hoarding has focused on exploring the underlying
neurobiology, cognitive processes and emotions of individuals who engage in
hoarding behaviours. Functional impairments are also highlighted in this body
of research. There is a paucity of research from the perspective of the person
who hoards and therefore no knowledge regarding how they manage their daily
occupations in a cluttered environment. Therefore, the aim of this study was to
gain insight into what it is like to live in a cluttered environment and how
people do the things they need to do every day. As such, this research took an
occupational lens to understanding this phenomenon, and was underpinned by
recovery principles, acknowledging the strengths and capabilities of people who
exhibit hoarding behaviours and who live in a cluttered environment.
Using a phenomenological methodology, specifically interpretive
phenomenological analysis, in depth interviews were conducted with six people
who were purposefully sampled on the basis of exhibiting hoarding behaviours
and who live in cluttered home environments. Data analysis identified three
superordinate themes: (i) Clutter and relationships and the relationship with
clutter; (ii) “I may look like I’m doing nothing but really, I’m super busy”: The
efforts of everyday life; and (iii) Organised disorganisation: Adapting the
environment to get things done. Each superordinate theme had corresponding
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sub themes. Overall participants in this study revealed that their relationship
with their ‘stuff’ and their collecting behaviours is a critical part of their identity.
They all revealed an ability to develop deliberate and complex routines and
strategies to perform daily occupations despite their cluttered homes. They
have shown strengths in their capacity to organise spaces that have significant
meaning and purpose within the overall disorganisation of their clutter. These
findings provide the first insight into the lives of this group from their own lived
expereinces. This research provides evidence for future research, practice and
policy that incorporates the meaningfulness of daily life for people who exhibit
hoarding behaviours. It also promotes their capabilities and strengths
previously unacknowledged in research.
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Chapter 1 Introduction
1.1 Research Background
We all collect and save something. For most of us it is not difficult to manage
our ‘stuff’. We buy what we need or want and sometimes we bring home too
much. When we have too much we throw things out, we recycle, donate, or sell
what we do not need. We keep things that have sentimental value. Most people
can modify the amount of possessions they have, so it fits with the amount of
living space available. However, some people have significant trouble resisting
the urge to acquire things and have even more trouble letting go of possessions.
For some, it becomes an overwhelming situation where their ‘stuff’ accumulates
to a point that can lead to challenges to live in their home environments, to
share space with others, and perform their daily occupations. For some, the
acquisition of possessions becomes an important occupation in and of itself.
One day, when I was working in a mental health rehabilitation service, I
received a referral for a man named Tony (pseudonym) who required an
occupational therapy assessment. The referral read: “a functional assessment of
living skills to support a boarding house referral”. Tony’s care coordinator
described his environment as “filthy and unliveable” and believed Tony did not
have the skills to live independently. I did a home visit and initial assessment.
The environment was very smelly and untidy, as was Tony himself. It was hard
to remain inside due to the unpleasant environment and we had to step outside
so I could talk to him. I persisted with the assessment over the coming days, and
it showed that Tony had enough basic living skills to remain living in his own
home with support. Tony was added to my occupational therapy mental health
rehabilitation caseload to increase his living skills. We wrote some goals
together and got to work.
Tony was working hard on his goals until one day I suggested we try and sort
through some of the paper rubbish he had collected. It was like we had hit a
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brick wall. Tony had a lot of papers and brochures around his house and it was a
real struggle for him to sort them and throw them in the bin. After a few weeks
of working with him, I discussed this in the team meeting and someone
suggested maybe it was hoarding. My response was “no it is not hoarding, he
doesn’t have stuff packing out his house”. This is when I started to do some
research. I bought a book by Frost and Steketee (2010) which spoke to the
many people they have visited over the years of their research and revealed the
importance of ‘stuff’ for people who hoard. Although Tony’s environment was
not filled with his stuff to the point where you could not move, he did exhibit an
attachment to his possessions and had problems making decisions about what
to discard. In Tony’s case, he was unable to discard anything.
As this was the first time I had worked with a person who had hoarding
behaviours, I continued to research the topic of hoarding to try and understand
the situations I was facing. Interestingly, I found a large amount of the research
was neurobiologically based, focusing on cognitive impairment. This research
identified information processing impairments to memory, attention and
executive functions as causal factors to hoarding behaviours (Frost & Hartl,
1996). Hoarding behaviours were therefore primarily viewed from a cognitive
behavioural model (Frost & Hartl, 1996; Steketee, Frost, & Kyrios, 2003). There
was, however, a paucity of research on how people performed tasks and
participated in occupations within their cluttered environments. Rather,
research described the numerous functional impairments of people with
hoarding behaviours.
As occupational therapists are concerned with the person, their environment
and their chosen occupations, the lack of occupation-focused research led me to
ask some of my occupational therapy colleagues what they thought the
occupational therapy role was when working with people with hoarding
behaviours. They responded, “it is a psychological problem so refer them to a
psychologist”. This experience was six years ago, and was the beginning of my
research journey.
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1.2 Research gaps
The difficulties people with hoarding behaviours experience with day-to-day
living are constantly documented in the hoarding literature (Frost & Hartl,
1996; Frost, Hristova, Steketee, & Tolin, 2013; Mataix-Cols et al., 2010; Ong,
Pang, Sagayadevan, Chong, & Subramaniam, 2015; Saxena et al., 2011). Yet
many remain living largely independent lives in their homes and do
demonstrate skills necessary for performing activities that facilitate
participation in occupation despite such challenges as cognitive, psychiatric or
psychological impairments (American Occupational Therapy Association
(AOTA), 2014)
To date, there is a paucity of research on hoarding that explores the lived
experience of living each day and performing daily activities and occupations in
a cluttered environment. Neurobiological research has instead focused on
impairments, outlining how cognitive impairment is evident for those who
hoard (Frost & Hartl, 1996; Frost, Steketee, & Tolin, 2012). The body of
hoarding research has therefore led to treatments that focus on cognitive and
behavioural strategies for discarding and managing the clutter (Steketee &
Frost, 2014b).
What is missing from the hoarding research is an occupation-focused
understanding of how people live daily life, taking into consideration the ability
to perform activities and participate in their chosen meaningful occupations.
Also missing is the role of recovery principles, which are pertinent to mental
health services, as a way of engaging people in therapy for their hoarding
behaviours (Australian Health Ministers’ Advisory Council, 2013). The voice of
the person who hoards and their lived experience of participation in daily
occupations in the cluttered home environment is missing. How the cluttered
home environment influences the person’s social and community occupations is
also missing in current research.
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1.3 Research aims
The aim of this study was to develop an understanding of how people who
hoard and live in a cluttered environment manage to accomplish daily
occupations. This understanding was achieved through exploring the
experience of daily life from the perspective of those who live and perform their
daily activities in their home despite the amount of clutter around them.
1.4 Research questions
1. What is the lived experience of living in a cluttered environment and
managing to participate in daily occupations?
2. How do hoarding behaviours and living in a cluttered environment impact
on participation in daily occupations?
3. What strategies do people put in place to manage participation in daily
occupations when living in a cluttered environment?
1.5 Scope of the research
It is estimated that there are approximately 600,000 people who are living with
hoarding behaviours in Australia today (Snowdon, 2012). Around the world,
statistics reveal that 2 to 5% of people are in similar situations. Therefore, this
is a significant issue nationally and internationally, and many services and
supports are emerging to assist people with the challenges that hoarding brings,
both practically and psychologically (Bratiotis, Schmalisch, & Steketee, 2011;
Snowdon, 2012; Snowdon & Halliday, 2009).
With the need to understand what life is like from the perspective of those who
live it each day, this study adopted a qualitative focus, taking an in-depth look at
how six people from the Greater Western Sydney area managed their daily
occupations while living in their cluttered home environments. Interpretative
phenomenological analysis (IPA) (Smith, 2009) was employed to gain an
understanding of the unique experiences of each participant.
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The findings, while being limited to those who took part in the study, may have
relevance to others living in similar situations and may inform those who
provide assistance, support and therapy.
1.6 Summary and thesis overview
This thesis contains five chapters. In this chapter, I have outlined the clinical
experience that ignited my drive to do this research and have given a brief
background to the study. The gaps in the literature were summarised and the
aims of this study and research questions presented.
Chapter Two reviews the historical literature and views about hoarding dating
back 10,000 years, and presents an overview of the first real efforts in 1993 to
systematically define hoarding by outlining the cognitive deficits contributing to
the cluttered environment. This chapter also presents current views on why
people hoard. The need to take an occupational focus to their lives is presented,
with literature on occupations, occupational therapy, the role of occupational
therapy in mental health and recovery reviewed.
Chapter Three outlines the methodology and research design, including the
justification for the use of interpretative phenomenological analysis. The
research methods are presented in detail, and rigour and ethical considerations
are discussed.
Chapter Four presents the study findings, revealing key themes that underpin
participants’ lived experiences of managing daily occupations in a cluttered
environment.
Chapter Five concludes the study by discussing the findings in relation to the
wider body of knowledge, outlining the implications of findings and limitations
of the study. Recommendations for future research are also presented.
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Chapter 2 Literature review
2.1 Introduction
Hoarding is a human behaviour that has existed for many centuries. People
collect and save things over their lives. However, when collecting behaviours
become more frequent, intense, and problematic, clutter can accumulate (Frost
& Gross, 1993; Frost & Hartl, 1996). At this stage, a person may be seen as ‘a
hoarder’. When clutter precludes the use of rooms for their intended purpose,
clinically significant hoarding is present (Frost & Hartl, 1996).
Hoarding affects approximately 2 to 5% of the population (Frost et al., 2012;
Frost et al., 2008; Grisham et al., 2010; Tolin, 2011). In the past two and a half
decades researchers have sought to understand this phenomenon. Historically
hoarding has been classified as a subtype of OCD (Gilliam & Tolin, 2010; Mataix-
Cols et al., 2010; Pertusa et al., 2010). Literature related to hoarding prior to
1993 was limited, however through a growing body of research, hoarding
disorder as a diagnosis has evolved and is now included in the Diagnostic and
Statistical Manual of Mental Disorders Fifth Edition (DSM-5)(American
Psychiatric Association, 2013).
A cognitive-behavioural model (Frost & Hartl, 1996; Steketee & Frost, 2006) of
hoarding has been established, outlining the complex interaction between
biological, cognitive, environmental, and emotional variables, all of which
contribute to the core symptoms of extreme saving behaviours, clutter and
acquiring. Information processing deficits underpin this model, with
impairments in attention, memory, executive function and emotional
attachment being observed in those that hoard (Frost & Hartl, 1996; Steketee &
Frost, 2006).
Hoarding is chronic in nature and can be linked to poor physical health, greater
rates of co-morbidity, poor treatment response, and serious community health
consequences (Pertusa et al., 2010; Tolin, Frost, Steketee, Gray, & Fitch, 2008).
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In severe cases of hoarding, the use of functional spaces within the home to
accomplish basic and instrumental activities of daily living such as bathing,
using the toilet, preparing meals, and using the bed to sleep are often precluded
(Pertusa et al., 2010; Turner, Steketee, & Nauth, 2010). Relationships with
family and friends are often strained and breakdown, and conflict with
neighbours and local authorities are common (Sampson, 2013). The cluttered
environment is a risk to the person who hoards and to others who live in the
home. Hoarding puts people at risk of fire, falls, financial distress, poor
sanitation, serious health risks and eviction (Frost, Steketee, & Greene, 2003;
Gibson, Rasmussen, Steketee, Frost, & Tolin, 2010).
This chapter reviews the literature on hoarding, highlighting the history of
hoarding through to current knowledge and latest treatments. The role
hoarding plays in people’s lives will be examined, along with the occupational
nature of humans and the role of occupational therapy in mental health and
specifically for people with hoarding disorder.
2.2 A brief look at the history of hoarding: From miserly wealth to mental illness
The history of hoarding dates back 10,000 years to the Mesolithic hunter
gathers of Europe and the Paleoindian period in the Americas (Penzel, 2014).
Uncovered by archaeologists, hoards in the European era tended to be
perishable food items, human remains, weapons and body ornaments. Hoards
in the Americas seem to have been created by toolmakers and contained stone
tools in various stages of completion. Hoarding has also been portrayed in
ancient Greek Mythology, with dragons described as the ‘keepers of collections’
(Penzel, 2014, p. 7). The Roman period saw considerable stores of gold, silver
and bronze coins. During the 18th and 19th century, many writings and plays
characterised miserly types as people who hoard wealth and possessions. One
of the most well-known and popular stories of hoarding is Charles Dickens’
character Ebenezer Scrooge (Penzel, 2014).
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It was around the turn of the 19th century that the earliest clinically-oriented
work to discuss any form of hoarding emerged, authored By Dr John Ferriar, a
physician (Penzel, 2014). He described the behaviour of his patient with
extreme book collecting in his publication “The Bibliomania: An Epistle, to
Richard Heber; Esq. (1809)” as: “What wild desires, what restless torments
seize the hapless man, who feels the book disease” (Ferriar, 1809, cited in
Penzel, 2014, p.12).
In his 1893 work, The Principles of Psychology, William James (cited in Penzel,
2014, p.12), commented that “the hoarding instinct prevails widely among
animals as well as among men”, and he describes someone who hoards as being
in a state where “his intellect may in matters be clear, but his instincts,
especially that of ownership, are insane”. By the early to mid 20th century,
hoarding went from being viewed as an eccentricity made for entertainment to
an illness that caused shame and stigma (Penzel, 2014).
Although James’ observations of hoarders was that of being mentally deranged,
it was Sigmund Freud who attempted to go beyond the idea of instinct by
explaining the source of this behaviour as psychosexual. In his 1908 paper,
‘Character and Anal Eroticism’, Freud related the hoarding of money to the anal
character (Frost et al., 2012; Penzel, 2014). Freud characterised this personality
type to be unwilling to spend money, having a stubborn inflexible and
unreasonable way of thinking, with rigid order in their life and an extreme
greed for wealth or material gains. In the early 1920’s, Jones (1912) expanded
on Freud’s theory, adding the hoarding of ‘objects’ to Freud’s anal character and
argued this was a precursor to the development of OCD. Jones (1912) observed
the collection of seemingly useless objects by obsessive patients who
rationalised this collection as something they may need one day (Frost & Gross,
1993).
Although hoarding has been a human behaviour for many centuries, literature
has rarely depicted the impact of hoarding behaviours on living conditions
(Penzel, 2014). This changed in the 20th century with the well-known case of
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the Collyer brothers in Manhattan. The Collyer brothers, Langley and Homer,
lived in a three story brownstone building in Manhattan. For decades, the two
lived in seclusion in their home where Langley obsessively collected books,
furniture, musical instruments, and uncountable other items. The clutter was so
significant that they lived without the necessary amentities. A labyrinth of
tunnels twisted throughout the house with booby traps set to make noise and
trap intruders. On March 21, 1947, both Collyer brothers were found dead,
surrounded by over 170 tonnes of collected items that had developed over
several decades. Homer who was blind and dependent on his brother for food
was found first. He had perished because of malnourishment. Langley was
found close by and is believed to have died first. He had died in one of his own
booby traps trying to get food to Homer. When their house was cleaned out
there were no real treasures to be found and the public found their situation
hard to comprehend (Frost & Steketee, 2010).
Several individual case studies from the 1940s to the early 1990s revealed brief
descriptions of hoarding, linked it to OCD and included hoarding in scales which
measure OCD (Frost & Gross, 1993). With the publication of DSM III-R in 1987
(American Psychiatric Association, 1987), hoarding was included, for the first
time, as a subtype of obsessive compulsive personality disorder. The first
attempt to systematically define hoarding behaviour was by Frost and Gross
(1993). These authors described hoarding as the acquisition of and failure to
discard a large number of posessions and suggested that indecisiveness,
concern about making mistakes when discarding, judgements about need and
emotional attachment to possessions were at the core of hoarding behaviour.
A subsequent study by Frost and Hartl (1996) further expanded the definition
to include distress or functional impairment and being unable to use living
spaces as intended. Frost and Hartl (1996) presented the first real
conceptualisation of hoarding, which still stands today:
(i) The acquisition of and failure to discard a large number of possessions
that appear to be useless or of limited value;
10
(ii) Living spaces sufficiently cluttered so as to preclude activities for which
those spaces were designed; and
(iii) Significant distress or impairment in functioning caused by the hoarding.
Frost and Hartl’s (1996) work thus proposed a cognitive-behavioural model of
hoarding to provide a framework for developing and testing hypotheses about
hoarding. It was in this model that hoarding was conceptualised as a
multifaceted problem stemming from information processing deficits, emotional
attachments, avoidance behaviours and false beliefs about the nature of
possessions. They noted that this model was not at all conclusive, and was
instead grounds for further research. Steketee and Frost (2006) further refined
the cognitive-behavioural model of hoarding which is now the most widely used
multidimensional model (Grisham & Baldwin, 2015).
The increasing body of evidence since this time supports hoarding disorder as a
diagnosis separate from OCD (Gilliam & Tolin, 2010; Mataix-Cols et al., 2010;
Pertusa et al., 2010; Snowdon, Pertusa, & Mataix-Cols, 2012). A comorbid mood
or anxiety disorder is prevalent for approximately 75% of people with hoarding
disorder (American Psychiatric Association, 2013; Frost, Steketee, & Tolin,
2011). The most common comorbid conditions are major depressive disorder
(up to 50% of cases), social phobias and generalised anxiety disorder (American
Psychiatric Association, 2013; Frost & Hristova, 2011; Pertusa et al., 2008).
Approximately 20% of individuals with hoarding disorder also have symptoms
that meet diagnostic criteria for OCD, refuting previous research claiming
hoarding to be a subtype of OCD (American Psychiatric Association, 2013; Frost
& Hristova, 2011).
2.3 Research that underpins the diagnosis of Hoarding Disorder in the DSM 5
More recently, research exploring the differences between hoarding disorder
and OCD consistently supports the hypothesis that the two have clinically
different symptoms.
11
Samuels et al. (2007) studied a large sample comparing differences between
hoarding and non-hoarding participants. Two hundred and thirty five hoarding
and 389 non-hoarding participants, all with obsessive compulsive disorder
(OCD)(age range 7 to 95 years), were recruited from an ongoing OCD
collaborative genetics study. Psychiatrists or PhD level psychologists
conducted structured and non-structured interviews and completed a variety
of other scales and checklists with participants. Five personality traits were
found to be independently associated with hoarding but not OCD: miserliness,
preoccupation with details, difficulty making decisions, odd behaviour or
appearance, and magical thinking. Overall, findings from this study provide
support for the idea that individuals with OCD and hoarding behaviour are
clinically different from those with OCD without hoarding behaviours.
Further, Pertusa et al. (2008) examined the idea that people with severe
hoarding and OCD are clinically different from those with OCD but without
hoarding. This study recruited particpants with the aim of comparing severe
hoarding individuals with and without OCD. The authors recruited OCD
patients with prominent hoarding symptoms (N=25) and severe hoarding
individuals without OCD (N=27). Controls in this study included: OCD patients
without hoarding (N=71), anxiety disorder without hoarding (N=19), and
community participants (N=21). People with hoarding behavours with and
without OCD were systematically compared. Results indicated that hoarding
behaviour was similar in the two hoarding groups with those in the OCD with
hoarding group showing “a different psychopathological profile characterised
by the hoarding of bizarre items (faeces, urine, fingernails, rotten food), and the
presence of obsessions and compulsions related to the hoarding” (p. 1296).
Overall Pertusa (2008) concluded that in most individuals with compulsive
hoarding, symptoms seem to be a syndrome separate from OCD, and are
associated with substantial levels of functional disability and social isolation.
Pertusa et al. (2010) conducted a review of literature with the aim to describe
the phenomenology and nosology of hoarding in relation to OCD and other
psychiatric and neurological disorders including but not limited to
12
schizophrenia, organic mental disorders, eating disorders, brain injury, and
various forms of dementia, developmental disorders and impulse control
disorders. The literature reviewed showed that hoarding can be a symptom of
several organic and psychiatric disorders and can be treated by treating the
underlying disorder. This study also concluded that even though most studies
conducted on hoarding are with participants with OCD and hoarding
behaviours, OCD is not the most frequent comorbidity seen with hoarding
behaviours, rather, it is just one possible comorbidity. Pertusa et al (2010)
concluded that the “Growing evidence from epidemiological, phenomenological,
neurobiological, and treatment studies suggests that compulsive hoarding may
be best classified as a discrete disorder with its own diagnostic criteria” (p.
383).
Given the research has been able to differentiate hoarding as a disorder separate
from OCD, criteria for a stand-alone hoarding diagnosis in the Diagnostic
Statistical Manual Version 5 (DSM 5) emerged (American Psychiatric
Association, 2013).
With the release of the fifth revision of the Diagnostic Statistical Manual (DSM 5)
by the American Psychiatric Association in 2013, hoarding disorder is now
itemised as a stand-alone diagnosis. The DSM 5 criteria for hoarding disorder
are as follows:
A. Persistent difficulty discarding or parting with possessions, regardless of
their actual value.
B. This difficulty is due to a perceived need to save the items and to distress
associated with discarding them.
C. The difficulty discarding possessions results in the accumulation of
possessions that congest and clutter active living areas and substantially
compromises their intended use. If living areas are uncluttered, it is only
because of the interventions of third parties (e.g., family members,
cleaners, authorities).
13
D. The hoarding causes clinically significant distress or impairment in
social, occupational, or other important areas of functioning (including
maintaining a safe environment for self and others).
E. The hoarding is not attributable to another medical condition (e.g., brain
injury, cerebrovascular disease, Prader-Willi syndrome).
F. The hoarding is not better explained by the symptoms of another mental
disorder (e.g., obsessions in obsessive-compulsive disorder, decreased
energy in major depressive disorder, delusions in schizophrenia or
another psychotic disorder, cognitive deficits in major neurocognitive
disorder, restricted interests in autism spectrum disorder).
Specify if:
With excessive acquisition: If difficulty discarding possessions is
accompanied by excessive acquisition of items that are not needed or for
which there is no available space.
Specify if:
With good or fair insight: The individual recognizes that hoarding-related
beliefs and behaviours (pertaining to difficulty discarding items, clutter, or
excessive acquisition) are problematic.
With poor insight: The individual is mostly convinced that hoarding-related
beliefs and behaviours (pertaining to difficulty discarding items, clutter, or
excessive acquisition) are not problematic despite evidence to the contrary.
With absent insight/delusional beliefs: The individual is completely
convinced that hoarding-related beliefs and behaviours (pertaining to
difficulty discarding items, clutter, or excessive acquisition) are not
problematic despite evidence to the contrary (American Psychiatric
Association, 2013, p. 247).
Despite hoarding being identified as a stand-alone disorder in the DSM 5, there
are still significant barriers to effective treatment, services and support
experienced by the person who hoards. Those who try to intervene and help
14
them overcome the symptoms of hoarding disorder are also challenged to find
useful and effective strategies that will reduce hoarding symptoms and better
manage the home environment.
2.4 It is not just cleaning up the mess: Insight, motivation and intervention
People with hoarding behaviours often display poor insight and have low levels
of motivation. Lack of insight and low motivation are significant barriers to
people with hoarding behaviours having successful outcomes with treatment
(Worden, 2014). Overall there is ‘no quick fix’ to cleaning a cluttered
environment. Forced clean outs do not work and the cluttered environment
returns to pre-intervention levels of clutter quite quickly (Steketee, Frost, &
Hyo-Jin, 2001; Worden, 2014).
Insight
Insight as a dynamic construct has many levels of awareness (Frost & Steketee,
2010; Worden, 2014). The ability to recognise symptoms as part of a larger
disorder, awareness of functional impairments, and the strength or fixation of
beliefs conceptualise the construct of awareness (Frost, 2010). For example, “a
person may be aware of their hoarding disorder and the related functional
deficits but are not able to recognise the irrationality of their beliefs” (Morgan &
David, 2004 as cited in Worden, 2014, p. 249).
Research has been conducted into hoarding and lack of insight and its
dimensions. For example, in a case study of two people with limited insight
about their hoarding, Frost, Tolin, and Maltby (2010a) suggested that
impairments underlying this limited insight were likely to be related to
anosognosia (lack of awareness of the existence of an illness or its
consequences), overvalued ideation (rigid beliefs surrounding the value,
meaning or importance of objects), and defensiveness (defensive about the
hoarding behaviours). Steketee et al’s (2001) earlier work reported that only
15% of people in a service for older people who hoard, acknowledged the
15
irrationality of their hoarding behaviours. Tolin, Fitch, Frost, and Steketee
(2010) conducted an internet based survey with family and friends (n=558) of
people who hoard. This research found that more than half (55%) of
respondents described their family/friend with the hoarding behaviours as
having poor insight (36%) or lacking insight/delusional (19%) about their
possessions. In a study by Frost et al. (2010a) clinicians rated the insight of
clients who hoard. This study found that clinicians assessed their clients as
having significantly lower insight than people with non-hoarding OCD
behaviours.
The problems with insight experienced by those who hoard has become part of
the diagnostic criteria of hoarding disorder. As outlined earlier in this chapter,
the DSM 5 criteria for hoarding disorder requires clinicians to specify the level
of insight a person with hoarding behaviours displays as good or fair insight,
poor insight, absent insight or delusional beliefs (American Psychiatric
Association, 2013).
Poor insight may be the reason people with hoarding behaviours are less likely
to seek treatment, are more likely to drop out of treatment and are less likely to
be successful in the treatment process (Frost et al., 2010a; Worden, 2014).
Treatment for people with hoarding behaviours is characterised by high
dropout rates and behaviours that interfere in the treatment process (Frost et
al., 2010a). It has been suggested that people with poor insight into their
hoarding behaviours may benefit from motivational interviewing as part of an
effective cognitive-behavioural treatment program for hoarding addressing the
ambivalence they have about changing their behaviours (Logan & Marlatt,
2010).
Motivation
Motivation is described as “a state of readiness to change, which may fluctuate
from one time or situation to another” (Miller & Rollnick, 1991, as cited in
Worden, 2014, p. 254). Motivation for people with hoarding behaviours can
significantly fluctuate during the treatment process, even with those who are
16
successful with the treatment (Frost et al., 2010a; Hartl & Frost, 1999). Worden
(2014) suggests the terms ‘insight and motivation’ should be used as separate
constructs in hoarding disorder and should not be used interchangeably as
many authors do. He gives an example of the difference as; “while many people
with hoarding behaviours show psychological reactance to treatment
recommendations, this does not necessarily mean they are not motivated to
change” (p. 254). However, Worden (2014) also positions the relationship
between insight and motivation as unclear in hoarding literature, and noted
there are likely overlaps. For example, as insight increases motivation to
change increases. Although Worden (2014) notes that this may not always be
so. For example, some people with hoarding behaviours may demonstrate
insight into their behaviours and functional limitations, but not be motivated to
change the behaviours because of the pleasure and comfort they find in their
possessions.
The Stages of Change Model developed by Prochaska and DiClemente (1986)
has been applied to hoarding behaviours (Worden, 2014). This model posits
five stages of change: (i) Precontemplation - unaware of their problems, (ii)
Contemplation - starting to think about their problems, (iii) Preparation -
preparing to make changes, (iv) Action - making the changes, (v) Maintenance -
consolidating and maintaining changes. Authors have noted that people with
hoarding behaviours can move between the stages of change at any time. For
example, Tolin et al, 2010 gives account of people with hoarding behaviours
being at different stages of change at the same time. They may be at the action
stage of addressing their acquiring of possession but be at precontemplative
state with discarding possessions. However, both Tolin et al. (2010) and
Worden (2014) have identified that people with hoarding behaviours are more
frequently understood to be at the precontemplative stage for all behaviours.
These authors have suggested that interventions for people with hoarding
behaviours should be tailored to the person’s stage of change, and what they are
ready to work on.
17
Interventions
There are few interventions offered to help those with hoarding behaviours.
Research shows that traditional therapies such as exposure and response
prevention, medications, traditional cognitive behaviour therapy or a
combination of these therapies used in treating OCD are not usually successful
for treating hoarding behaviours (Muroff, Bratiotis, & Steketee, 2011; Steketee
& Frost, 2014a).
Muroff, Bratiotis, & Steketee (2011) conducted a literature review identifying
27 studies, both published articles and unpublished manuscripts, on treatment
for hoarding, identifing a modified cognitive behavioural model to specifically fit
those with hoarding behaviours as a ‘gold standard’ for treatment.
In a systematic review of functioning and quality of life for people with hoarding
behaviours, Ong (2014) found that studies of hoarding groups compared to
other clinical groups, support the view that hoarding symptoms have a
significant and considerable effect on function, impacting psychosocial,
occupational and family functioning. Ong, et al (2014) concluded that functional
impairment observed in hoarding is specific to hoarding symptoms, rather than
attributable to the presence of psychopathology. Ong’s (2014) review of the
literature supports the idea of activity limitation and participation restriction
impacting occupational function in a cluttered environment rather than
impairment as a result of psychopathology. Overall both studies presented
evidence that hoarding behaviours impact occupational functioning and similar
types of interventions that may improve function.
Identified as the most effective treatment for hoarding to date (Muroff et al.,
2011), is the Steketee and Frost (2007) hoarding model of cognitive behaviour
therapy, based on the cognitive behaviour model of hoarding by Frost and Hartl
(1996). As a part of the ‘Oxford University Treatment That Works’ series, the
Compulsive Hoarding and Acquiring Therapist Guide and Client Workbook was
developed by Steketee and Frost (2007) and updated in 2014 (Steketee & Frost,
2014b). This program teaches people skills and techniques to address hoarding
18
behaviours. Intervention plans focus on problem solving, decision making and
organisation skills. Throughout this program anxiety caused by discarding
possessions is addressed, as are thought patterns and beliefs about possessions.
Finally, maintenance of new skills is taught using coping and stress management
skills (Steketee et al., 2007; 2014). The program consists of repeat cycles of
three visits in the clinical setting where consumers bring with them a box of
possessions to sort and discard and a home visit on the fourth occasion to
confirm skills are being transferred to the home environment. If the clinician
cannot make the home visit, a ‘coach’ should be identified to help. This cycle can
be repeated for 12 months or more. Efficacy of this modified hoarding model of
cognitive behaviour therapy is limited to those who have insight and wish to
engage in the therapy process (Muroff et al., 2011). People who are forced to
participate in such a program, for example by authorities, are usually not
successful, tending to develop interfering and avoiding behaviours resulting in
them dropping out of therapy (Steketee & Frost, 2007). While improvement in
hoarding behaviour has shown promise using the above-mentioned model,
there is an ongoing need to develop and provide further interventions that are
effective in terms of providing significant outcomes (Muroff, 2011).
Future directions for research into treatments for hoarding behaviours have
been identified. Muroff (2011) emphasised the need for evaluation and
improvement of treatment approaches, highlighting the prevalence of the
disorder and the “distress, dysfunction, and potential health and safety dangers
associated with this problem at the individual, family and community levels”,
(Muroff et al, 2011, p. 421). Ong (2015) concluded that “there needs to be a
further research to explore treatments for functional impairments that could
effectively improve and enhance the well-being of people with significant
hoarding” (p. 26).
As previously noted there is a paucity of literature that explores the lived
experience of people with hoarding behaviours and the impact of particular
interventions on day-to-day life. There is a need for the perspective of people
19
living with hoarding behaviours to become part of the research knowledge
clinicians use to develop interventions that work.
2.5 Hoarding behaviour: The lived experience
Notwithstanding progress made in recent years to understand the lives of those
who hoard, research on hoarding is usually conducted within a positivist
paradigm. Three studies have been conducted from a phenomenological
paradigm focusing on the lived experience of hoarding. Two studies focused on
the lived experience of family and carers (Sampson, 2013; Wilbram, Kellett, &
Beail, 2008), and one study on the lived experience of the person who has the
hoarding behaviour (Kellett, Greenhalgh, Beail, & Ridgway, 2010).
Using interpretive phenomenological analysis, Wilbram et at, (2008)
interviewed ten family members who were key carers for someone with
hoarding behaviours. Participants living in the United Kingdom ranged in age
from 37 to 71 (mean age 56 years). Seven of the ten participants shared their
home with the person with the hoarding behaviours. The authors described the
clutter in the homes to be extensive, with entry impeded and rooms not usable
for their intended purposes. The super-ordinate themes of this study included
‘‘loss of normal family life, the need for understanding, coping with the
situation, impact on relationships, and marginalization”. These authors
concluded that disruption to family and social relationships was evident. Basic
day-to-day living activities such as cleaning the home, cooking and sleeping
were compromised. Themes reflected a picture of carers struggling to cope
with and understand the multifaceted effects of hoarding behaviours, and the
impact on the wider family and community. Not only did carers and family feel
like they were “walking on eggshells” (p. 70) for fear of disturbing clutter, they
felt they had to physically accommodate clutter in their homes and not just
tolerate it. Carers expressed feelings of alienation, being unheard and
misunderstood by services and this increased feelings of isolation. They also
felt there was a need to develop a better understanding of hoarding behaviours.
For carers whose loved one had a comorbid diagnosis such as autism,
20
schizophrenia, or dementia, contextualisation of the hoarding behaviours was
easier to understand. However, for those without comorbidities, carers were at
risk of believing they had allowed the hoarding behaviour to develop and that
they were to blame for the behaviour continuing. Overall, participants were
explicit about the need for information and support to help them in the caring
role. Participants also reported a lack of awareness among professionals which
presented a barrier to accessing services. It was concluded that service
providers such as community mental health teams need better training and
support to help families cope with caring for a loved one. Without awareness of
hoarding behaviours, services risk not being able to respond to the “real lived
experience and needs of clients” (Wilbram et al., 2008, p. 71).
Whilst Wilbram et al, (2008) investigated key caregivers living with the person
with hoarding behaviours, Sampson (2013) investigated the experience of being
a family member of a person who hoards rather than a caregiver. In this study,
twelve participants ranging in age from 20 to 63 were interviewed to explore
the question: What is the lived experience of a family member of a person who
hoards? (Sampson, 2013). Data were analysed using interpretative
phenomenological analysis (Smith, 2009). Five super-ordinate themes
emerged; “Negative Feelings Toward Family Members Who Hoard, Lack of
Understanding of Hoarding Behaviour, Experiences of Loss, Internal Barriers to
Seeking Support, and Internal conflicts” (p. 398). As with Wilbram et at, (2008),
Sampson (2013) found participants lacked understanding of the family
member’s hoarding behaviour, its causes, what to do about it, and coping with
and managing the behaviour effectively. Participants reported that their family
member became defensive and resisted or avoided any attempts to help clean
and organise the clutter. Sampson (2013) noted that feelings of ambiguous loss
underpinned the dynamic. Ambiguous loss refers to a loss or trauma situation
that remains incomplete, confusing, or uncertain for family members (Boss,
2005). Relationships were strained by this ambiguous loss and together with a
lack of understanding of hoarding behaviours, family members started to have
negative feelings towards their loved one. Overall this study showed the huge
21
burden family members carry when trying to support their loved one with
hoarding behaviours. Both Sampson (2013) and Wilbram et at, (2008) report
that health professionals need to have up to date knowledge about hoarding
while Sampson (2013) concluded using an ambiguous loss framework may
benefit family members.
Only one study to date has focused on the lived experience of the person who
hoards. Using interpretative phenomenological analysis (Smith, 2009), with
semi structured interviews, Kellett et al. (2010) sought to understand hoarding
from the lived experience of 11 participants (three males and eight females).
Participants lived in the United Kingdom and ranged in age from 26 to 63 years
(mean age =38.41 years). Seven of the 11 participants lived alone. All
participants had OCD. Analysis identified four super-ordinate themes:
(i) Childhood factors – parental relationships, attachment and abuse: Participants
described how hoarding behaviours emerged during childhood and
adolescence. They described they learnt to suppress their emotions because
their parents were strict, rejecting and authoritarian. Some participants
reported physical and sexual abuse and having all their possessions destroyed.
(ii) Relationship to the hoarded items – emotions, utility and the object as
memory: Participants described strong emotional attachments to their
possessions. There was a sense of identity wrapped up in their possessions and
they felt that their possessions secured their memories. Some participants
anthropomorphised their possessions, worrying that if they only had one of
something it would get lonely.
(iii) Avoidance of discard – behavioural and cognitive aspects: Findings revealed
behavioural (churning and a slow pace of discard) and cognitive (perfectionism
and fantasy about having perfect homes) avoidance as two categories for
avoiding the discard of possessions.
(iv) Impact upon self, others and the physical environment: Participants discussed
the experience of shame when others visited their home and stigma when
22
others do not understand their hoarding behaviours. They also reported feeling
engulfed both psychologically and physically by the amount of clutter in their
homes. Participants described a sense of entrapment with the feeling of not
being able to relocate due to difficulties with selling their home or the huge task
of physically moving their possessions. Participants felt overwhelmed by the
amount of clutter and the inconvenience of not being able to function effectively
in their home.
These authors concluded that for people who hoard, the way in which they
make sense of their hoarding behaviours, the possessions they hoard and the
home environment requires further clarification (Kellett et al., 2010). There is a
need to understand how people living in an environment so cluttered that basic
activities of daily living are precluded, still manage their occupations and go
about daily life in the home and community.
2.6 Taking an occupational perspective to the lived experience of hoarding
What is missing from the research literature is an understanding of how people
live daily life, and engage in everyday home and community occupations while
living as a person with hoarding behaviours. To date most research is
neurobiological and focussed on hoarding symptomology, trying to classify
people, determining potential causes for hoarding behaviours, and reasons for
maintaining those behaviours. Research has identified impairments in
cognition and the psychology behind hoarding behaviours to gain a better
understanding of hoarding disorder and identify potential interventions.
Along the way, research has identified how people with hoarding behaviours
struggle to function with daily occupations in the cluttered environment. In the
Australian context, occupational therapists are one group of mental health
professionals who have the opportunity to work closely with people who hoard.
In doing so, occupational therapists aim to understand the role hoarding plays
in their clients’ daily lives and their identity as an occupational being. However,
to date, occupational therapists have limited evidence to draw on as they seek to
23
understand the occupational nature of hoarding in their clients’ lives. Taking an
occupational lens to research on hoarding is needed to further understand
occupational performance in a cluttered environment.
The importance of occupation in people’s lives
“To be human is to be occupational” (Dickie, 2014, p. 3). People naturally have a
strong urge to do things by participating in daily activities that contribute to
health and well-being (Blair, Hume, & Creek, 2008; Kielhofner, 2009). What
people do is complex and multidimensional, yet so fundamental to life (Harvey
& Pentland, 2010; Wilcock, 2001; Yerxa, 1990). “Occupation is what people do
minute by minute, hour by hour, day by day, week by week and year by year”
(Wilcock, 2001, p. 412), encapsulating all the things that people do in their
everyday life, not just paid employment (Yerxa, 1990). Taking the dog for a
walk, reading a book or the newspaper, washing hands, cooking dinner,
sleeping, caring for a child, watching television or listening to the radio, are all
occupations that people do every day without ever thinking about them as
occupations (Harvey & Pentland, 2010; Yerxa, 1990).
Occupation is a biologically driven need, evident in the evolutionary history of
humankind, and people are physiologically conditioned to participate in
occupations as an act of self-preservation and survival (Dickie, 2014; Yerxa,
1990). Self-preservation and survival were evident in the Mesolithic hunter
gathers of Europe and the Paleoindian period in the Americas with their hoards
being perishable food items, human remains, weapons and body ornaments and
stone tools (Penzel, 2014). However, occupation goes beyond survival.
Townsend (1997) proclaims the ways in which people occupy themselves
individually, and as a society, is the “active process of everyday living” (p. 19).
“Everyday life consists of engaging in daily tasks to perform meaningful
activities required by occupations coupled with subjective value for the person
that the tasks and activities provide” (Harvey & Pentland, 2010, p. 102).
Hoarding can be understood as an occupation. It consists firstly of the daily
tasks performed such as getting dressed in the morning, getting in the car,
24
driving around the community, picking up items from council clean-up piles,
putting the items in the car, taking the items home, putting the items in the
chosen ‘pile’. These tasks form the activity of acquiring which is one facet of the
occupation of hoarding (Harvey & Pentland, 2010). The research on the lived
experience of hoarding reveals that the activities and tasks related to hoarding
brings enrichment to the lives of people who hoard, and is something that has
purpose and meaning.
Engaging in tasks and performing activities requires people to use executive
functions that allow successful participation in complex, novel and dynamic
occupations (Cramm, Krupa, Missiuna, Lysaght, & Parker, 2016). Executive
functioning refers to a higher level of cognitive function and is a “complex
neuropsychological concept referring to a person’s coordinated ability to plan,
initiate, organize, connect information, transition, shift mindsets, set goals,
prioritize, remember, and self-monitor”(Cramm, Krupa, Missiuna, Lysaght, &
Parker, 2013, p. 139). Executive functions maintain the ability to problem solve
and make decisions and are “intimately connected with the processes by which
people do purposeful activity, independent of intelligence” (Cramm et al., 2013,
p. 139; Driscoll, 2014). Impairment in information processing and executive
functions, is likely to be a core factor that contributes to the maintenance of
acquiring and saving behaviours with hoarding (Timpano, 2014).
Occupational therapists use performance based executive function assessments
in relation to the whole task to appraise the conditions in which the person can
successfully accomplish the task (Baum, Morrison, Hahn, & Edwards, 2007;
Cramm et al., 2016; Katz, Tadmor, Felzen, & Hartman-Maeir, 2007). Therapy
then focuses on improving their ability to perform and participate in their
chosen occupations using learned strategies associated with tasks that have
meaning to each person (Cramm et al., 2016). Wherever occupations take place,
they need to be considered with the context of the social and physical
environment (Kielhofner, 2009).
25
Environmental settings are many and varied, and include home, work, school or
other sites for gatherings, such as theatres, churches, clubs, libraries,
restaurants and shopping centres (Hinojosa, Kramer, Royeen, & Luebben, 2003;
Kielhofner, 2009). The social environment includes groups of people who
provide and define expectations for roles within particular environments
(Kielhofner, 2009). The physical environment is made up of the spaces in which
people engage in occupations, and objects in the spaces (Kielhofner, 2009).
Occupational performance can either be supported or inhibited depending on
the environment. Depending on the level of clutter, a person with hoarding
behaviours may experience limitations when performing tasks required for
everyday living. They may experience restriction in occupations by not being
able to access the bathroom and therefore be unable to attend to basic tasks of
self-care. A cluttered kitchen will limit and restrict capacity to prepare meals.
However, despite such limitations and restrictions, people with hoarding
behaviours still engage in tasks in their own way to perform daily activities that
contribute to participation in daily occupations of self-care, productivity,
rest/sleep and leisure. However to date, no research has identified how they
manage these challenges, nor the strategies they use to overcome them.
Participation in occupations is biologically driven and essential to human
existence for health and well-being. Occupational therapy is concerned with
health and well-being through helping people participate in occupations using
activities of everyday life. Therefore, what is needed in relation to hoarding
disorder is a more in-depth understanding of how people manage their
occupations within a cluttered environment and the potential role of
occupational therapy with people who hoard.
Occupational therapy
The primary goal of occupational therapy is to assist people to participate in the
occupations of everyday life. The occupational therapy process provides a
client-centred structure for occupational therapists to support people in
engaging in tasks and performing activities that allows desired and needed
26
participation in occupations in the home, workplace and the wider community
(American Occupational Therapy Association (AOTA), 2014; Schell, Scaffa,
Gillen, & Cohn, 2014). Occupation can be evaluated using both non-
standardised and standardised assessments, including interviews and
observations which provide understanding of a person’s performance when
participating in occupations within physical and social environments (Brown,
2009). The occupational domains assessed by occupational therapists include:
occupation, client factors, performance skills, performance patterns, context and
environment and activity demands (See Table 1)(American Occupational
Therapy Association (AOTA), 2014). Occupational therapists give equal value to
all aspects of these domains as together they “interact to affect the person’s
occupational identity, health, well-being and participation in life” (American
Occupational Therapy Association (AOTA), 2014, p. s4). Given the impairment
based focus of the hoarding literature, the domains assessed by occupational
therapists could add to the overall picture of a person who hoards by
contributing holistic knowledge focused on the significance and meaning of
occupations, rather than on isolated structural and functional impairment
(American Occupational Therapy Association (AOTA), 2014, p. s4; World Health
Organization, 2001).
27
Table 1: The domains of occupational therapy
OCCUPATIONS CLIENT FACTORS PERFORMANCE SKILLS
PERFORMANCE PATTERNS
CONTEXTS AND ENVIRONMENTS
ACTIVITY DEMANDS
Activities of daily living (ADLs)
Instrumental Activities of daily living (IADLs)
Rest and sleep Education
Work
Play
Leisure
Social participation
Values, beliefs and spirituality
Body functions
Body structures
Motor Skills
Process (cognitive) Skills
Social interaction skills
Emotion regulation skills
Habits
Routines
Rituals
Roles
Cultural
Personal
Physical
Social
Temporal
Virtual
Objects used and their properties
Space demands
Social demands
Sequencing and timing
Required actions
Required body functions
Required body structures
All aspects of the domain transact to support engagement, participation, and health. This exhibit does not imply a hierarchy(American Occupational Therapy Association (AOTA), 2014, p. s4) .
28
Using the information gathered during the initial evaluation phase, occupational
therapists, in collaboration with the person, plan interventions which are
meaningful and will assist in reaching an optimal state of functioning (Krupa,
Fossey, Anthony, Brown, & Pitts, 2009). This process of evaluation and
intervention is dynamic rather than linear. Throughout the occupational therapy
process, occupational therapists engage in clinical reasoning to identify the skills
required to meet the demands of the task and activity that facilitate participation
in occupations (American Occupational Therapy Association (AOTA), 2014; Schell
et al., 2014). Occupational therapists along with the client can “continually reflect
on and change the overall plan of intervention to accommodate and moderate any
new developments or insights along the way” (American Occupational Therapy
Association (AOTA), 2014, p. s11).
People who hoard and live in cluttered environments are challenged by the
complex tasks, activities and occupations that take up most of their time and have
so much meaning to them: collecting and organising their belongings. The ability
to engage in their other occupations and live in their home environment is
problematic, and they may eventually be referred to an occupational therapist for
assistance. These therapists are normally located in a mental health service
setting. Also, given that hoarding disorder is now a stand-alone diagnosis in the
DSM 5 (American Psychiatric Association, 2013) and recognised as a mental
illness, research exploring the occupational nature of hoarding needs to take a
recovery approach (Australian Health Ministers’ Advisory Council, 2013) that is in
line with modern treatment approaches for people with mental health challenges.
Occupational Therapy in Mental Health: Occupation and Recovery
2.6.3.1 Occupation and Occupational Therapy
Occupation, the things that people do every day, is the core focus of occupational
therapy, regardless of service setting or client group. The ability to cope with life
situations, adapt to circumstances and set and achieve realistic goals can be
29
defined as being mentally healthy (Blair et al., 2008). A belief in one’s self-worth
and potential, enables emotional and spiritual resilience to survive pain,
disappointment and sadness. Occupational therapists view health and well-being
as a dynamic, functional state which enables a person to participate in daily
occupations to a satisfying and effective level and to respond positively to change
by adapting activities to meet changing needs (American Occupational Therapy
Association (AOTA), 2014; Blair et al., 2008)
In contrast, “mental illness can and does disrupt a person’s sense of well-being and
capacity to think and feel in a way that is ‘normal’ to them. Mental illness
interferes with being able to participate in occupations both physically and
cognitively” (Blair et al., 2008, p. 19). Individuals will try to use existing skills to
master new situations but if those skills fail, new skills may need to be developed.
If the situation does not come under the control of the person, it is likely a crisis
will occur (Blair et al., 2008; Kielhofner, 2009).
Occupational therapy in mental health adopts the philosophical view that people
have the ability to influence their own health through what they do (Kielhofner,
2009). The ways in which occupations change over the course of the life span and
correspond to life events is central to understanding each client’s life in a mental
health setting (Blair et al., 2008). It is through participation in occupation that
people fill the time in their day, create an identity and existence and make their
place in the community, allowing them to explore and interact with their
environment in an adaptive way (Dickie, 2014). When people build identities
through occupations, they are provided with the contexts necessary for creating
meaningful lives and it is this meaning that helps keep people well (Christiansen,
1999).
The evidence base demonstrating the importance of occupation to the lives and
health and well-being of people with mental health problems continues to grow
(McKay & Robinson, 2011). McKay and Robinson assert that “when working with
people who experience mental health problems, the starting point is that all
occupations have the potential to be therapeutic” (2011, p. 217). The key to
30
helping a person engage in the process of achieving meaningful and purposeful
occupational participation is collaboration. The therapeutic use of the self is one
way of creating opportunities through collaboration for people to participate in
chosen occupations. The therapeutic use of self is “the ability to react to and
respond to the person and their environment in way that is designed to elicit a
positive therapeutic outcome”(Martin & Wheatley, 2008, p. 243). Utilising the
therapeutic use of self with a client-centred approach, occupational therapists
engage people in a narrative process of evaluating their occupational history, their
past experiences, patterns of daily living, interests, values and needs in order to
build an occupational identity (American Occupational Therapy Association
(AOTA), 2014; Kielhofner, 2008; Schell et al., 2014). As evaluation progresses,
occupational therapists build a story of what the person identifies as meaningful
occupation and who they want to be as a person. A collaborative and therapeutic
relationship between the therapist and the person supports the person to identify
occupational goals for intervention and how to achieve those occupational goals is
negotiated (American Occupational Therapy Association (AOTA), 2014; Blair et al.,
2008; Schell et al., 2014).
Engaging the person with hoarding behaviours in the occupational therapy
process, building a narrative utilising the above mentioned occupational therapy
domains, will build an occupational profile that is holistic and allows the person to
identify occupational goals that are meaningful, valuable and interesting to them.
2.6.3.2 Occupation and Recovery
Recovery is a consumer driven framework that is embedded in policy and guides
service provision. It is applicable and appropriate to anyone who experiences a
significant mental health problem at any age (Kirby, Hall, & Wren, 2013) and is
created on the belief “that people can recover from mental illness” (Anthony,
2000, p. 159). However, recovery is not synonymous with a cure; rather it
recognises the unique journey a person goes through when rebuilding a life
beyond that of having a mental illness (Anthony, 2000).
31
Whilst there is no one definition or model of recovery, the most commonly
used definition is by Anthony, 1993, who describes recovery as:
A deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful, and contributing life even within the limitations caused by illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness (p. 527).
Recovery was conceived by and for people with lived experience of mental illness
(Australian Health Ministers’ Advisory Council, 2013) and is understood as a
unique personal journey, best described in the person’s own words. Recovery
affirms a sense of identity beyond a diagnosis. Recovery principles include: self-
direction, person centred care, peer support, empowerment and strengths based,
holistic, nonlinear and fosters respect, responsibility, and hope (Australian Health
Ministers’ Advisory Council, 2013; Stoffel, 2011). These principles are expected to
underpin mental health service delivery, regardless of setting.
Recovery-oriented practice is not the domain of any one discipline or professional
group. However, a recovery orientation toward living a full and meaningful life
aligns well with occupational therapy philosophies. Occupational therapists work
with people to enable participation in daily occupations that are important to
them, and support health and participation in life (Stoffel, 2011). This aligns with
the recovery philosophy of living a meaningful life alongside the challenges of
mental illness (Cone & Wilson, 2012).
Occupational therapists can ask their clients to reflect on their recovery stories,
their lived experience as a means of tracking where they are on the journey, where
they have come, and where they hope to go (Stoffel, 2011). Given that stories can
be written, read out loud, developed over time and shared with others, using
narrative as a means to help clients construct their recovery stories also facilitates
self-understanding (Stoffel, 2011). As mentioned above and in line with recovery
principles, narrative in occupational evaluation is effective in building an
occupational profile, allowing people to identify what is meaningful occupation for
them. Recovery-oriented approaches recognise the value of this lived experience
32
and bring it together with the expertiseof the client and the, knowledge and skills
of mental health practitioners.
Considering most people with hoarding behaviours have very little insight about
the issues and impact of their behaviours, they nevertheless participate in day-to-
day occupations. The connection between occupation and recovery, given that
participation in personally and socially meaningful activities and roles has been
considered a critical element of the recovery process, places occupational therapy
in an ideal position to work in collaboration with people who have hoarding
behaviours. Occupational therapists working in the mental health field utilising an
occupation-focused and recovery-oriented practice paradigm, can support
individuals with hoarding disorder to become empowered and identify their
strengths (Cone 2014). Using the self as a therapeutic tool, building rapport and
trust outside of specific treatment for hoarding behaviours and supporting
meaningful activities, may lead to people being able to build an identity outside of
the one they have built around their possessions.
The first step is to better understand the lived experience of those who hoard and
live in a cluttered environment. Using an occupational lens to investigate the
daily lives of those who hoard, as well as a recovery oriented framework to
identify strengths and individual journeys of participants, this study aimed to
better understand the everyday lives of people with hoarding behaviours and the
strategies they use to accomplish their daily occupations.
2.7 Summary
Many of the studies located in this literature review identify significant
interference with occupational functioning in the home, due to the amount of
clutter which precludes spaces in the home being used as intended. Most
hoarding studies focus on neurobiological impairments of those who hoard, and
are quantitative in nature. Other research on daily life report effects of hoarding
behaviours on occupations in a cluttered environment quantifiably. There is a
paucity of research that focuses holistically on the person who hoards, exploring
their lived experience and occupations. Only one study was located that focused
33
on the lived experience of the person who hoards, however only a very small part
of this study explored activities of daily living.
This masters study provides an initial understanding of how people experience
participation in daily occupations in a cluttered environment. It also provides a
basis for further research focused on developing evidence-based occupational
therapy approaches to hoarding. The following chapter outlines the research
methodology underpinning the study.
34
Chapter 3 Methodology
3.1 Introduction
The previous chapter reviewed the literature on hoarding, its treatment and a
potential role for occupational therapy, highlighting gaps in knowledge. This
chapter outlines the theoretical underpinnings of this research and includes
justification for choosing a phenomenological methodology. The recruitment
process and method of data collection are outlined. The process for data analysis
is detailed and ethics considerations and approval presented.
3.2 Theory
The constructivist worldview holds that people interpret and make sense of the
world in which they live and work by developing subjective meaning and
understanding in what they experience. Reality is historically and socially
constructed and there is no single, objective or observable reality. Multiple
realities are presumed, with each individual experiencing their own reality
differently (Creswell, 2014; Grbich, 2013).
Research within the constructivist paradigm relies on participants’ views of the
situations being studied, focusing on specific contexts in which people live and
work. The understandings constructed and interpreted are limited by the
researcher’s own background, subjectivity and intersubjectivity. The intent is to
make sense of how others engage in and make sense of the world based on their
own historical and social perspectives (Creswell, 2014; Grbich, 2013).
3.3 Research Design
Qualitative research is an umbrella term used to describe research methods and
paradigms that rely on the collection, analysis and interpretation of data that is
not mathematical in nature (Merriam & Tisdell, 2016; Smith, 2009). There are
many qualitative research designs with some of the more common approaches
being ethnography, grounded theory, phenomenology, case study, action research
35
and narrative inquiry (Creswell, 2014) . Each of the many and varied qualitative
designs have some attributes that are common in nature, such as studying the real
world setting and discovering the richness of everyday life as experienced by the
person themselves (Merriam & Tisdell, 2016). However each of the designs have a
somewhat different focus resulting in variations in how the research question is
posed, the sample selection, data collection, data analysis and the write up of
results (Merriam & Tisdell, 2016).
“Phenomenology is a philosophical approach to the study of experience” (Smith,
2009, p. 11). This approach is best utilised when rich details of a person’s
experience with a particular phenomenon is the focus of the research and there is
little or no in-depth knowledge of the particular phenomena under investigation
(Grbich, 2013; Smith, 2009). This study adopted a phenomenological approach to
considering the lived experiences of people exhibiting hoarding behaviours who
were living in a cluttered environment. The research sought to understand what it
is like to live in a cluttered environment and how people do the things they need
to do every day when living in such an environment. To gain this understanding, it
was imperative to elicit the perspectives of those living with hoarding behaviour
in a cluttered environment directly. Interpretative phenomenological analysis
(IPA) (Smith, 2009) was chosen as the specific method to facilitate understanding
and interpretation of the lived experience of living in a cluttered environment.
Interpretative phenomenological analysis
Interpretative phenomenological analysis is a somewhat new but rapidly
developing approach to qualitative research (Smith, 2009). Smith (2009)
developed IPA, drawing on concepts from three areas of philosophical knowledge:
phenomenology, hermeneutics and idiography. These three influences are
outlined below.
The first influence on IPA is phenomenology. Phenomenology is a descriptive
approach to the study of experience developed by Edmund Husserl (Eatough &
Smith, 2007; Smith, 2009). Husserl argued that the basis of phenomenology is the
careful examination of human experience. He was predominantly interested in
36
finding a means by which someone might accurately know their own experiences
of a given phenomenon with such a depth that they may be able to identify the
essential qualities of the experience (Smith, 2009). Fundamentally, this entails
stepping outside of one’s own everyday experience in order to examine that
everyday experience. When a person self-consciously reflects on everyday
experience by recalling images, sounds or objects, it is said they are being
phenomenological (Pietkiewicz & Smith, 2014; Smith, 2009). By recognising the
basic compnents of the phenomena, the researcher identifies the essential
components of an in-depth description that captures the quintessential experience
(Eatough & Smith, 2007; Pietkiewicz & Smith, 2014). Using the Husserl line of
thinking, the researcher must consciously suspend or withhold pre-conceptions
and refrain from any conclusion, otherwise known as bracketing, to capture a rich
description of the experience.
Hermeneutic phenomenology, the second influence on IPA, is the theory of
interpreting (Smith, 2009). Heidegger, a student of Husserl, diverged from
Husserl’s approach, moving away from the descriptive and towards the
interpretive or hermeneutic. Hermeneutics goes beyond descriptions of
experiences to look for meanings embedded in those experiences (Sharkey, 2001).
These meanings are not always apparent to the participants but can be gleaned
from their narratives. Hermeneutics, therefore, is discovering meaning and
achieving a sense of understanding by identifying, describing and interpreting the
everyday lived experience (Walker, 2011). Unlike descriptive phenomenology,
interpretative phenomenology does not consider that the researcher suspend or
withhold their pre-conceptions (Eatough & Smith, 2007). One of the assumptions
underlying hermeneutic phenomenology is that the expert knowledge of the
researcher is valuable to guide and add meaning to the study (Lopez & Willis,
2004). Hermeneutics identifies meanings from a blend of the researcher’s
understanding of the phenomenon and the information generated from
participants (Swanson & Wojnar, 2007). The analytical process in IPA is often
described in terms of a double hermeneutic. Firstly, the participants make sense
and meaning of their experiences, and secondly the researcher tries to interpret
37
that meaning to make sense of the participants’ meaning making (Pietkiewicz &
Smith, 2014; Smith, 2009).
Idiography, the third influence on IPA, is concerned with the particular instances
of lived experience pertaining to individual cases (Smith, 2009). This is done
through an attentive, in-depth analysis of each individual case. The researcher
first examines the unique contexts of each case and produces emerging themes for
each individual. Only then does the researcher complete a cross case analysis
looking for the patterns and connections or differences across the cases.
In sum, consistent with phenomenology, Smith (2009) suggests IPA specifically
explores “how people make sense of their major life experiences” (p. 1), and their
personal and social worlds. IPA explores the wholeness and uniqueness of what
happens to people in their everyday experience of life with the aim being to
develop a complete and in-depth picture. IPA is interpretative in that the
researcher makes sense of participants’ experiences using interpretative analysis
(Smith, 2009). IPA is idiographic and dedicated to the detailed analysis of each
participant’s experience before moving to an examination of the similarities and
differences across the participant group (Smith 2009).
3.4 Research Methods
Recruitment
Researchers who use IPA as a method should concentrate more on the depth and
detail of analysis and interpretation of the data, rather than the breadth of the
study (Pietkiewicz & Smith, 2014; Smith, 2009; Turpin et al., 1997). Sample size
can be as little as three participants for a novice researcher and up to eight or ten
for an experienced researcher (Smith, 2009).
Sampling must be consistent with the research method (Smith, 2009). Participant
selection was purposeful, in line with an IPA approach. Purposeful sampling is a
technique widely used in qualitative research for the identification and selection
of information-rich cases for the most effective use of limited resources (Patton,
2002). This involves identifying and selecting individuals or groups of individuals
38
that are especially knowledgeable about or experienced with a phenomenon of
interest (Creswell, 2011). Frequently used by qualitative researchers, purposeful
sampling draws on researcher knowledge about a population, and is used to hand
pick participants to be included in the study sample and help meet the aims of the
research (Bazeley, 2013; Polit, 2001).
In this study, participants were selected for their particular experiences of living
in a cluttered environment. Many people living in a cluttered environment have
hoarding behaviours and are often connected to local mental health services.
Therefore, accessing potential participants via local mental health services was
chosen as the most likely recruitment path for this study.
During the recruitment phase, I spoke to mental health care teams working within
a Greater Western Sydney Local Health District, I also met individually with
mental health clinicians and support workers. During these meetings, the
research purpose was explained and a request made for clinicians and support
workers to inform potential participants about the study. Information sheets
(Appendix 1) outlining the research and instructions for recruitment were
emailed to the health care clinicians and support workers. An advertisement
poster was displayed in the reception area of two local health districts (Appendix
2).
The initial round of recruitment saw no referrals from mental health services.
Amendments to the ethics application were made to broaden the potential pool of
participants. Organisations outside of mental health services were targeted, with
letters sent to various non-government organisations supporting people with
mental illness, social housing providers, and local councils in the nominated
Greater Western Sydney area (Appendix 3). The letters contained an introduction
to the research and myself as the researcher, ethics approval information, and
potential benefits of the study. Each letter had a request for the manager or
delegates to approve recruitment to the study via their agency. Only two letters
(Appendix 4) came back agreeing to participate, one from a local non-government
agency and one from a social housing provider.
39
Over a period of nine months, a total of six people agreed to participate in this
study (Appendix 5). As previously stated, this sample size is in keeping with IPA
participant guidelines for a masters study (Smith, 2009). There were three
females and three males, although this equal recruitment was not at all deliberate.
Ages ranged between 42 and 57 years (mean of 49 years). All participants were
living in the community in cluttered environments, and exhibiting hoarding
behaviours. Only two participants shared their home with others. One participant
was in paid employment, two participants were in receipt of a disability support
pension, one participant was in receipt of a disability support pension and also
participating in regular volunteer work. One participant was a full-time stay at
home mum and one participant was a full-time student. All participants were
recipients of community services, with four receiving general psychological, non-
hoarding specific support and two receiving support from hoarding-specific
services. Table 2 summarises participants’ profile.
40
Table 2: Participant profile *not hoarding specific services
Pseudonym Gender and Age (years)
Marital Status
Family Status Housing Work and Financial Status
Service Use at Time of Interview
Mental Health Status
John Male 50yrs
Divorced 1 child not living with participant (aged 14)
Private Rental
Disability Support Pension
Personal Helpers and Mentor Program (PHAMS)*
Diagnosed Major Depression and anxiety disorder
Noah Male 48yrs
Divorced 2 children not living with participant (age unknown)
Home owner
Disability Support Pension
Illawarra Disability Trust*
Diagnosed psychotic disorder
Gillian Female 49yrs
Married, living with spouse
No Home owner
Student Private Psychologist * Diagnosed anxiety disorder
Allison Female 42yrs
Married, living with spouse
4 children living with participant (10yr old boy and 9-year-old triplet boys – all diagnosed with Autism)
Home owner
Home Duties Personal Helpers and Mentor Program (PHAMS)*
Undiagnosed at time of interview
Patricia Female 49yrs
Single No Social housing
Paid employment Catholic Community Services non-government organisation providing specific hoarding service
Diagnosed Dissociative Identity Disorder
Marcus Male 57yrs
Single No Social housing
Volunteer work Disability Support Pension
Catholic Community Services Non-government organisation providing specific hoarding service
Diagnosed Attention Deficit Hyperactivity Disorder and anxiety disorder
41
Data collection
In-depth interviews are often described as a conversation with a purpose and
refer to interview techniques that provide textually rich data (Minichiello, 2008).
The aim of an in-depth interview is to enter the participant’s life world and allow
for the participant’s narrative of the life experience under study to emerge
(Minichiello, 2008; Smith, 2009). As such, in-depth interviews are an effective
method for exploring phenomena that are not well understood and explore
research questions concerning the meaning of events or phenomena to research
participants. By using in-depth interviews with the participants in this study, the
researcher was able to gain knowledge on the thoughts, perceptions, and feelings
of participants in their own words regarding everyday life in a cluttered
environment (Minichiello, 2008). A semi-structured interview guide (Appendix 6)
was developed in discussion with the supervisory panel to prompt the researcher
during interview. The interview schedule consisted of one main question “tell me
what it is like to live in a cluttered envrionment”. The questions that followed
were typical of what is considered every day activities and required for
occupational engagement. These questions were used as a prompt for the
researcher to consider in the context of the interview to ensure the narrative
contained approptiate data.
Information sheets (Appendix 7) and verbal explanation of this study were given
to each participant prior to interviews. Face-to-face semi-structured interviews
(Appendix 6) took place with participants in a location of their choice, ensuring
participants were comfortable during the interview. Each interview lasted for
approximately 60 to 90 minutes, with extra time at commencement to assist with
building rapport, and additional concluding discussion to close the interview
process. As part of the research process, I also requested that photos be taken of
the person’s environment or supplied by the participant at the time of the
interview or soon after. Photographs were requested for several reasons: (i) to
aid the interview discussion should it not be held in the home environment,
enabling the participant to discuss actual aspects of everyday life in relation to
42
their home environment; (ii) to enable me to accurately recall the home
environment during analysis and interpret participant’s views in relation to the
actual environment; and (iii) to assist readers to better understand participants’
homes, allowing them to visualise the environments being described by
participants and to have a clearer understanding of the themes in relation to the
actual environments in which people managed everyday life. The photographs
therefore informed the analysis of the interviews as well as enhanced the
presentation of results to readers unfamiliar with the types of cluttered
environments in which people live and the challenges they pose (Grbich, 2013).
Interviews took place over a period of eight months, with the first interview on
30th July 2014 and the final two interviews on 14th of April 2015. The first
participant’s interview was conducted in an office environment at the participant’s
request, with photographs supplied to me at that time. The participant was not
comfortable to have me visit his home. The interview with the second participant
was conducted in an office environment. However, a home visit followed where I
was permitted to take photographs. Interviews with the third and fourth
participants were conducted in each participant’s home environment and
photographs taken. Interviews with the final two participants were conducted at a
public facility at the choosing of the participants and photographs were supplied,
but no home visits occurred.
All interviews were audio recorded and transcribed verbatim for later analysis. A
professional transcription company completed transcription. I reviewed all
transcripts by reading them while listening to the audio recording to ensure
accuracy. Corrections were made as necessary. During this iterative phase of the
study and discussions with my supervisory panel, the focus of data analysis
changed from an occupational therapy model to a strengths based- recovery
model in keeping with modern day mental heatlh practices. As a result a change in
the title of this thesis incurred. Hence documents in the appendix have a diffent
title to the final title of this study.
43
Data Analysis
Interpretive phenomenological analysis consists of a six-step method; however,
this is not intended to be prescriptive (Smith, 2009). The essence of IPA lies in its
analytic focus characterised by a set of common processes. Smith notes that this
process involves “moving from the particular to the shared and from the
descriptive to the interpretative and is described as an iterative and inductive
cycle” (2009, p. 79). The six-step method was followed in this study, selecting
options from within the method that were most suitable to the data collected. The
six-steps are:
Step 1: Reading and re- reading
This first step involves the researcher listening to the recorded audio whilst
reading the typed transcript and then re-reading the transcripts to become
immersed in the data, thereby ensuring the person is the focus of analysis. This
process is important to become actively involved with the data.
Step 2: Initial noting
This step in analysis is the most detailed and time consuming. Notes are taken
during, as well as following on from, step 1. Notes taken from transcripts are
organised under three column headings, namely ‘original transcript’, ‘exploratory
comments’ and ‘emerging themes’, to help with analysing the data for each
participant. Organising the transcripts this way allows exploration of the content
of the interview for key words, phrases or explanations which matter to the
participant. In the exploratory comments, annotations were made regarding
interesting or significant statements, and what appears to hold meaning for the
participant in relation to the questions asked. There are no rules in IPA about
what is commented upon, and there are no requirements for example to divide the
text into meaning units and assign a comment for each unit. Some parts of the
interview were richer in description warranting more comments than other parts.
Comments made in the exploratory comments column aimed to paraphrase or
summarise what the participant had described in the original transcript. This
44
process continued for the whole of each transcript before returning to the
beginning of the transcript to explore the emerging themes of the transcript.
Step 3: Developing emergent themes
This step of analysis involves reducing the amount of data from the initial
transcript and the initial notes to then map the connections and patterns in the
exploratory comments to emerging themes at an individual level. During this
stage of analysis, discrete portions of the transcript became the focus. A list of
emerging themes was developed, followed by a search for connections across the
themes within each transcript.
Step 4: Searching for connections across emergent themes
Step 4 involves plotting or mapping how the emergent themes fit together into
super-ordinate themes. At this level of analysis, the researcher is encouraged to
explore and transform the organisation of the analysis. Smith (2009) describes
specific ways of looking for the patterns and connections between the emerging
themes as:
(i) Abstraction – a basic form of identifying patterns between emergent
themes and developing a sense of what will be the super-ordinate
themes.
(ii) Subsumption - similar to abstraction but operates where an
emergent theme itself acquires a super-ordinate status as it helps
bring together a series of related themes.
(iii) Polarisation – examining transcripts for the oppositional
relationships between emergent themes by focusing upon
differences instead of similarities.
(iv) Contextualisation – identifying the contextual or narrative elements
within an analysis and looking for the connections between the
emergent themes.
45
(v) Numeration – taking account of the frequency with which a theme is
supported. This is not the only indicator of the theme’s importance
and should not be over-emphasised.
(vi) Function – emergent themes can be examined for their specific
function within the transcript. For example, the interplay of
meanings illustrated by organising themes by their positive and
negative presentation may be interpreted beyond what the
participant presents in terms of their meaning.
As stated above, these strategies of looking for patterns and connections are not
intended to be prescriptive, but rather are used by the researcher to help the
analytic process. Using the above strategies, themes from each idiographic
analysis were ordered and reordered, exploring the spatial representation of how
the emerging themes fitted together to form super-ordinate themes.
Step 5: Moving to the next case
This next step involves moving from one participant’s transcript to the next
participant’s transcript and repeating the processes of steps one through to five.
During this stage of analysis, it was important that each interview was treated as
individually unique, with a bracketing of the ideas and emerging themes from the
previous analysis. This process continued for each subsequent transcript.
Step 6: Looking for patterns across cases
In this step, using the completed table from step three, each super-ordinate theme
from each participant’s analysis was examined. Super-ordinate themes from
across all analysed transcripts were classified. This final step led to the
development of three super-ordinate themes. These three super-ordinate themes
and their respective sub themes are presented in detail in the results chapter.
Findings of this research have not yet been shared with all participants. However
during the data analysis stage the researcher presented initial findings at a
conference at which two of the participants were present. Both particiapants
sought the researcher after the presentation and comfirmed that the presented
46
findings accurately represented their experiences of living in a cluttered
environment.
3.5 Quality of the research
Yardley (2000) outlines four core principles for evaluating the trustworthiness of
qualitative research as: sensitivity to context, commitment and rigour, transparency
and coherence, and impact and importance. In keeping with the philosophy of
qualitative methods, Yardley (2000) suggests the core principles are not rigid
rules or prescriptions but rather are open to flexible interpretation. These four
core principles proposed by Yardley (2000) are suggested by Smith (2009) to
assess rigour in IPA studies. For that reason, and in keeping with the use of
Smith’s approach in this study, the same four core principles proposed by Yardley
(2000) were applied to this study.
Sensitivity to context
Demonstrating sensitivity to context can be established using theory, relevant
literature, empirical data, sociocultural setting, and participants’ perspectives
(Smith, 2009; Yardley, 2000). Sensitivity to context is shown in this study by my
knowledge of the existing literature related to hoarding and living in a cluttered
environment, being able to rationalise the choice of IPA as an appropriate method
to gather participants’ views, and keeping a close engagement with the idiographic
nature of analysis. Sensitivity to context continued throughout the analysis stage
where I was engaged in making sense of the way the participant was making sense
of their experiences (double hermeneutic). The interactional nature of data
collection through in depth interviews, and establishing and maintaining rapport,
are further examples of sensitivity to context and are central to the research
process of IPA.
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Commitment and rigour
Establishing commitment and rigour can be demonstrated in several ways. Smith
(2009) notes that commitment is demonstrated by being attentive to the
participant and their needs during interview. In this study, all participants were
given a choice of location of interview, with the suggestion it be somewhere they
would be comfortable sharing their story. Participants also had the choice of
whether photographs of their home environment were to be used in the final
presentation of this thesis.
Rigour also refers to the thoroughness of the research, the appropriateness of the
sample to the question being asked, the quality of the interview processes, and the
completeness of the analysis undertaken (Smith, 2009). Purposeful sampling
recruited a group of participants who were able to share their experiences of
living in a cluttered environment that was the result of their hoarding behaviours.
Furthermore, as can be seen in the results chapter that follows, the depth and
breadth of analysis moved from the thick description of participants’ experiences
to the interpretative analysis by me. I sought education and feedback from my
two academic supervisors to ensure that the IPA approach was being applied with
rigour. I also contacted via email Professor Jonathan Smith, key author of the IPA
approach as cited throughout this thesis. This contact clarified questions about
the research process. He generously replied to emails providing insight into
procedures and analytical steps, ensuring the method was applied rigorously. As a
researcher in training, this research was conducted, and the written thesis
produced, by systematically following Smith’s (2009) text ensuring an accurate
application of IPA methods. This practice showed commitment to methodological
competence, rigour in procedures, and the building of the skills required to
conduct the study.
Transparency and coherence
Transparency and coherence relate to how clearly the stages of the research
process have been described, as well as the consistency between the research
design and methods and the underlying theoretical assumptions of the approach
48
being utilised (Yardley, 2000). This is demonstrated by the detailed descriptions
of participant selection, how interviews were conducted and the steps used to
analyse the data collected. Transparency is also demonstrated by the use of
verbatim extracts from each participant’s interview in Chapter 4 Results, to
support argument, giving the participants a voice and allow the reader to check
the interpretations being made. All stages of the research are consistent with the
IPA methodology.
Impact and importance
Yardley (2000) asserts that “the decisive criterion by which any piece of research
must be judged is, arguably, its impact and utility” (p. 223). The research results
should offer a novel, challenging perspective, which opens up new and enriching
understandings of the topic. It should be practical, resulting in a close fit between
research and practice. Smith (2009) writes “the real validity lies in whether it tells
the reader something interesting, important or useful” (p. 183). To demonstrate
this, Chapter 5 Discussion and conclusion includes sections outlining the
implications of this research for clinical practice, policy, theory and education, as
well as recommending future research that should follow this study.
3.6 Ethical Considerations
Ethics approval for this study was given by the Local Health District Human
Research Ethics Committee. HREC project number 13/078 (Appendix 8).
Reciprocal approval from the University Human Research Ethics Committee was
also gained (H10364) (Appendix 9). The key ethical considerations are detailed
below.
Third party recruitment and dual relationships
Five participants were recruited via a third party as described previously to avoid
any coercion. One participant self-referred after hearing about the study at a
public conference. Therefore, in no instance did I directly engage with potential
participants in a coercive manner. Since I was also a senior staff member of a
Local Health District, it was critical that no participants be recruited where a
49
previous clinical relationship existed and furthermore, it was important to ensure
that a clinical relationship did not follow the interview. The one participant who
did not have services and support in place to assist with their hoarding behaviours
requested my assistance to seek help in this area. With their permission, this
participant was referred to the local mental health rehabilitation team for follow-
up outside of the study.
Participant information and consent
Participation in this research was voluntary. Participants were fully informed of
all aspects of the study prior to giving informed consent to participate. The
participant information sheet and consent form were fully explained to
participants either before or at the commencement of the interview. Participants
were given the opportunity to take the information and discuss it with a
significant other if they felt this was needed. All participants signed the consent
forms without further discussions. Confidentiality was assured and steps were
taken to de-identify transcripts during the transcription phase.
Harm or discomfort to participants
It was anticipated at the outset of research that there would be little to no
psychological distress to participants. Participants were aware that they could
stop the interview at any time. As a senior mental health clinician, I had the skills
and expertise to assist with the distress should this be required. Fortunately,
these skills were not required, with no participants becoming distressed or
needing to stop their interview. All participants were linked with a support
service or had a significant support person they could discuss the interview
process with if required.
Managing the collected data
All data collected for this study has been managed electronically and in hard copy
to adhere to ethical requirements. Electronic information has been kept on my
personal laptop computer. The computer is kept in my home and requires a
password to access the operating system. All hard copies of transcripts and
50
interpretation of same were kept in my home during the research process and
were locked in a filing cabinet in the home office. Following the completion of the
research, all files and hard copy material was moved to secure storage at Western
Sydney University in the supervisor’s office in a locked filing cabinet. After a
period of seven years, files and hard copy materials will be destroyed in
accordance with the joint NHMRC/AVCC Statement and Guidelines on Research
Practice as reported in the General Retention and Disposal Authority for
university records (State Records NSW) section 23.6.2.
3.7 Summary
In this chapter, the methodological design of this research to best investigate the
experiences of people displaying hoarding behaviours regarding living in a
cluttered environment was carefully considered. Interpretative phenomenological
analysis was chosen as a suitable method to understand from participants’
accounts what it is like to live in this way. Justification for choosing this particular
phenomenological method was given. The process and difficulties in recruitment
were discussed as were the methods of data collection and data analysis.
Trustworthiness of this study was addressed and ethical considerations outlined.
The results of analysis, including the stories and valuable insights of the people
who participated in this research, are detailed in the following chapter.
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Chapter 4 Research Results
4.1 Introduction
Chapter three presented the methodology, research design, research methods and
ethical considerations. This chapter will present the results of the research. Three
super-ordinate themes emerged from the data, comprising several themes across
cases. Table three displays an outline of the super-ordinate themes and themes
across cases. As per Smith (2009), an explanation of each super-ordinate theme
will be given followed by a full and rich description of the themes. The themes
making up each super-ordinate theme will be illustrated using detailed verbatim
extracts from the interviews and photographs from participants’ homes.
Pseudonyms are used throughout the chapter to protect participants’
confidentiality.
Table 3. Super-ordinate themes and themes across cases
Super-ordinate themes Themes across cases
Clutter and relationships and the relationship with clutter
A relationship with clutter: The link between the past and present
“I’m a collector”: Clutter and identity
Relationships strained by clutter: Shame, guilt and isolation
“I may look like I’m doing nothing but really, I’m super busy”: The efforts of everyday life
Getting things done
Finding things in the mountains of clutter: “You need a…homing pigeon device”
Making decisions about the stuff of life
Getting help
Routines and procedures
Organised disorganisation: Adapting the environment to get things done
Isolated pockets of organised spaces
Relocating tasks and resources
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4.2 Clutter and relationships and the relationship with clutter
All participants noted that living in a cluttered environment and having hoarding
behaviours started at a pivotal time in their life and served a particular purpose.
The impact of the clutter on self-identity was significant and participants’ sense of
self was shaped by their identities of being “collectors”. Participants’ experiences
also revealed what the clutter meant to them, and they shared how the stuff of
their lives significantly shaped their daily life, yet also placed a tremendous strain
on relationships.
A relationship with clutter: The link between the past and present
For many participants, they collected things that had emotional ties. It might be
something from their childhood or from a time they felt strongly about. Collecting
things helped ease anxieties about losing part of themselves or helped keep the
past in the present. Being surrounded by their things provided a safety zone
where they felt calm and secure. Each participant’s story revealed significant
background reasons for the commencement of collecting behaviour, as well as
why this behaviour continued.
Patricia
For Patricia, collecting is a safety factor. Patricia experienced complex and severe
trauma as a child. When she was a child, the clutter on her bedroom floor served
as a warning mechanism that someone was entering her room. Now, Patricia has
clutter around her external and internal windows, which serves a similar function
to her childhood clutter (see Figure 1).
I think it served a function of…. I knew if somebody was sneaking into my room because they’d step on something and yell out… so it was like a warning.… I’ve always felt safer and since we’ve started cleaning out my room I haven’t been able to sleep in my bedroom.
On the day of interview, Patricia had an appointment with her support worker to
discuss if she could manage to start clearing the clutter outside from under her
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bedroom window. “We’re going to work today under the window. I don't think I
could do that on my own. Yeah, I think I'm ready to do that today. We'll see what
happens!”
Figure 1 – Under the window in Patricia’s house
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John
John collected things from the time he was a young boy. He enjoyed collecting
things associated with his interests.
I think all of us used to collect things, things that interested me like books, magazines, things like that. Not so much fiction but manuals and that sort of stuff, a lot of electronic stuff. We used to like electronic test gear and things like that, electronic kits and equipment like that. I'd been scouting all my life and the odd collection of things there as well, so climbing gear and different paraphernalia involved with scouting and that. I was always into collecting one thing or another.
Nowadays, John’s relationship with his clutter served a different purpose. John
lived in a run-down property and the landlord does not adequately maintain the
the property, probably due to difficulties with access resulting from the clutter
(see Figure 2). This suited John as he got to stay living there despite his clutter.
He was concerned if he did clear out his clutter he would be evicted. This made
John anxious about clearing out his home and he avoided discarding unneeded
items and wondered whether doing all this work was worth it in the long run.
I'm fearful that when I get to the point of actually clearing the house out and I'm comfortable with having the real estate come in and have people inspect the house again, I'm fearful that they're not going to do anything and they're not going to fix the issues and problems that I've got in the house that I need fixing and that stops me from wanting to achieve it. As much as I'd like to achieve it, I'd like to find the easy way to do that and when the easy way isn't there then that's when it becomes a struggle.
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Figure 2 – John’s yard
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Marcus
Marcus spent significant periods as an adolescent and young man living in
institutions. As a result, he had no space of his own to keep things and lost many
treasured collections.
When I was 12 years old I was diagnosed with a mental illness and then I had my first admission. So from the age of 12 to the age of 21, I had two birthdays outside hospital. In some ways I was a bit of a collector especially when I was at home…I love collecting things. I used to collect paperbacks and comics. But when you're in hospital you tend to lose a lot of your collections, all your books
He had always been a collector from a young age but his living environments
limited the extent of his collecting.
Remember, most of my life, even after hospital, I lived in institutionalised environments, boarding houses, guest houses. So we didn't have the space and a lot of those places didn't encourage you to collect. I think I always had that in me of collecting.
His collecting continued when he eventually went to live on his own (see Figure 3).
Today Marcus lives alone in an apartment and is learning how to let go of some of
his clutter. He finds he is able to let go of his things as long as they are going
somewhere or to someone with a purpose and not being thrown in the bin. He
calls this process “recycling”.
I still have a problem letting go of some things, mainly books or items I've bought or whatever. I'm slowly teaching myself how to let go. I've created recycling and what I do know is I don't throw things out.
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Figure 3 – Marcus’ dining area
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Gillian
It was not clear in Gillian’s interview why she started to collect things. What was
clear was that Gillian’s relationship with her collections is grounded in the idea of
recycling. At the front of her house is a pitched tent full of grey plastic shopping
bags. The items on her kitchen bench are for recycling. If in public, Gillian will not
throw anything in a bin, instead bringing it all home to be recycled (see Figure 4).
What I try and do is take it home, if there's a package of something. Like I've bought a drink, so rather than put it in the bin I'll take the package back with me and then what happens is it will accumulate next to the side of the sink.
Gillian has good intentions of taking her collections to the recycle centre but just
never seems to get there. She explained that something always came up to
interfere with her plans to recycle.
I just can't pin myself down to go through things. That's a special day project. It's all my little special day projects where I'm going to get rid of all the newspapers, I'm going to get rid of all, I'm going to write down what mail comes in. Maybe I thought I would do an A to Z index sheet of A and I get mail from organisation A, so I could keep a record of all the stuff that's coming in. And those special days when I want to work on special projects, special projects like getting all the plastic bags, taking all the plastic bags to the plastic bag recycler. Taking all the foam to the foam recycler, getting the house painted. Those special project days seem to never come. There's always something that happens. And I always tend to underestimate how long it takes me to do things.
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Figure 4 – Items in Gillian’s kitchen waiting to be recycled
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Allison
Prior to having a family Allison worked as a personal assistant and described
herself as an organised person. Allison’s home was organised and she entertained
family and friends. After the birth of her first child Allison could keep the home
tidy. It was after giving birth to triplets that her home became extremely
cluttered. Her first-born son was only 18 months old when the triplets were born.
She did not cope well with having four young children under the age of two. As
the children grew, Allison seemed to struggle with the clutter even more. What
seemed to start off as clutter that resulted from a lack of time to clean up, had now
become problematic and overwhelming because she could not cope (see Figure 5).
I couldn't give the bottles away and then the nanny would say to me ‘Allison, what's with the bottles’, and I'd say ‘oh no, no, well you know the bottles, I need them in the night time when they're sick, I can't get rid of the bottles’. Can't deal with this….so I started hoarding baby bottles and I should have tossed them out.
The clutter put a strain on her relationship with her husband and Allison
explained this was what started her magazine collecting.
Someone yelling at you is not going to help you in the slightest and it's going to make you worse… So what it did, it actually started my magazine hoarding because in magazines there are articles about honouring yourself, and about Feng Shui placement. There's one thousand million articles in Take 5, That's Life, Woman’s Day and New Idea.
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Figure 5 –Allison’s dining table covered in clutter
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Noah
Noah was young when his mother died and his father turned to gambling in a bid
to try and cope with losing his wife. As a result, Noah felt he had lost both parents
and explained that this was when he started “collecting”.
My mum died when I was five … years old alright. So, my dad used to gamble, and he's lost his wife…… That's when I started, as a five-year-old. I'd collect bikes. My dad would always throw them out.
Noah’s continued pattern of loss in relationships led him to reflect that in his life
he has had many people leave him, but his clutter remains a constant, to the point
where he states: “You can't really make choices with people, they just, they leave
you…But yeah like clutter, it's kept me alive”
Noah’s relationship with his things is a little different to the other participants. He
never felt lonely, isolated, embarrassed or distressed about his things. He was
excited by his clutter. It meant he always had something to do (see Figure 6 and
7).
Well I like things to have, so the more things I've got the more things I've got to look at, the more things I've got to do. If there's less things there's less for me to do…. It's exciting for me sometimes because I've got different things to do and sometimes I'll get something out that I haven't seen for a few years and then I'll, ‘oh remember this’ and then I'll do something, repair or clean it…. But anyway, I like just doing things, like repairing, fixing, like repairing a mower and then mow the grass.
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Figures 6 – Noah’s lounge room.
Figure 7 – Noah’s lounge room.
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“I’m a collector”: Clutter and identity
Participants spoke about their self-perceptions, their identities and where the
collecting and clutter fit into their lives. For some there was shame and
embarrassment about both their behaviour and living in a cluttered environment.
For most there was a clear link between their clutter and their identity.
Gillian identified as a “collector”, stating that it is who she was and who she will
always be: “I'm always going to be a collector. Stuff is always going to be an
important part of my life”. Collecting remained a significant part of Gillian’s life,
but it often left her feeling embarrassed and self-conscious about needing help
with everyday living tasks that she felt she should be able to do herself.
It's a bit embarrassing because it feels like it's something that I should do myself. It's a living skill [cleaning the kitchen and bathroom] that I'm challenged with and it's embarrassing that I have to get Sheldon to help me.
Gillian’s negative sense of herself at home was at odds with her other
accomplishments in the wider world. Gillian had been, and still was, a competent
student, studying enrolled nursing, and with many other diplomas and degrees in
varying subjects. She acknowledged that she does “study quite well” and that she
liked to “get a good mark”. Her identity at home was shaped by her clutter and her
failure to cope with basic tasks. Her student identity was more positive.
Patricia’s interview revealed a distinct separation between her “disorganised”
home self where clutter was a major problem, and her “high functioning” work self
that was efficient and capable. Patricia also experienced a dissociative identity
disorder (previously known as multiple personality disorder). Each of her
identities acquired different items and each brought these items home. Patricia
was not allowed to discard the items that were collected by her other identities.
So, yeah, I’ve got lots of stuff. I live with dissociative identity disorder and I’ve got different parts that have bought different things, different items of clothing and I cannot throw them out. It’s almost like there’s a part of me, that part of me is saying “that’s mine, you can’t throw it out”. So, I don’t even know how to wear, I wouldn’t even know how to wear it but I’m not allowed to throw it out.
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Patricia’s work identity is one of an “an efficient manager”. Her work identity
allowed her to live a separate life beyond the clutter at home:
Basically, I ignore …my home environment … like a separate life. When I go to work I’m an efficient manager. I manage a team …. I am very efficient and effective in my job. I do public presentations. I’m on various state wide committees. I do lots of high functioning things and it’s like that other part of my life does not exist. That disorganised, difficult part of my life isn’t with me.
Many participants spoke of wanting to change who they were, to no longer be
someone who was anxious and ruled by their collecting and experiencing all the
challenges of living in a cluttered environment. For example, Allison wanted help
and wanted to be able to make changes to have a better quality of life for her and
her family. However, her negativity led to her having doubts about her ability to
change.
So I'd love to talk to you and maybe if we could do this exact conversation in a year or two I wonder if it's different. I want to be different. I want to be better. I want to have a better attitude and better surroundings…I'm fucking freaking out. How am I going to cook the meals, how am I going to pick up the kids? Auto pilot - my brain goes negative, negative, negative, you can't do it, don't do it….See this is where my problem is, I don't know if I'm coming or going. I'm a bloody horror. I'm my own worst enemy.”
John talked about being a “lost soul”. He was depressed by his situation and for a
while turned to drugs as a way to cope. He knew there had to be something better
for him and decided to get help. For twelve months, he attended the office of a
local non-government organisation for treatment to deal with his depression and
drug use. But he felt there was something still not right and he decided to show
his support worker his home. Since revealing the extent of his cluttered home, and
gaining some support to help his situation, his life had turned around and he was
able to cope with things day-to-day and saw himself in a better light.
I like my life a lot better now than it used to be. Nowadays I'm more dealing with things a lot better than I used to. I think before it was more of a struggle and I didn't actually know what I was doing, didn’t appear to know what I was doing in general day-to-day activities and things.
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Marcus also felt more positive about his life and himself once help was found. He
spoke of living many years in denial of what was happening. Things turned
around when finally a mental health professional broached the topic of his
cluttered environment. Marcus was offered a referral to the right service that
could support and assist him to learn how to manage his acquiring and
consequential clutter. He spoke of how clutter impacted people’s lives over time,
and how help could turn things around, and made suggestions about how others
could be helped sooner:
I'm also ashamed. I think there is three parts to the problem. The first is denial you know because a lot of people are thinking yeah….they see they've got a mess but they can cope. But the second part is they become ashamed. They're really ashamed of how they're living. Then the third part is ‘I want help but I don't know how to ask’. So they might finally get 10 years in denial then they spend another two years in that shame feeling and then they spend another two or three years thinking, ‘how the fuck do I ask for help? I need…I want help but how do I ask for it?’ So if we can push that closer and just having like 10 years denial and then able to, if we can see signs of someone being ashamed maybe they'll help you with that opening. It's just got to be little, for a wall to fall down it needs to start with a minute crack. So if a health worker can see that minute crack and that minute crack is feeling ashamed maybe that's what they can use……. instead of having to wait another four or five years before the person can finally ask for help.
While many participants felt shame and guilt and wished to better manage their
clutter, Noah on the other hand loved all his clutter. His possessions were a way of
life, a way of making money and surviving. The clutter was an essential part of his
identity. Without his clutter Noah would not know who he was or what to do. But
he did want to manage this aspect of his life by turning collecting into something
more lucrative.
It makes me happy that I'm doing something… I collect things, that's my thing and clutter is a good thing, it kept me alive, it saved me then. Okay. So I don't just want to let it go. I want to keep it all organised and pick and choose things properly. Like I've got a guy that takes all metal, he's got a truck and he just throws it all on and he sells it. He makes a lot of money with his truck. I'm even thinking to buy the truck off him and just collect the metal so I can make the money. I need to survive. No one's giving me a go. No one's saying ‘here's a job for you
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Relationships strained by clutter: Shame, guilt and isolation.
Participants spoke about their relationships with other people and how these
relationships were influenced by their cluttered homes. Some participants were
just too embarrassed to have anyone see their home so cluttered. Others had lost
relationships with loved ones due to the clutter. The shame and guilt felt by
participants left many feeling isolated and lonely.
For example, Noah struggled to maintain relationships with his family and his
employers, and had no real friends. In the past, Noah had been married with two
sons. It was the impact of his hoarding on his children that was a significant issue
for him. While Noah adored his two sons, he no longer saw them as there was
simply nowhere for them to sleep in his cluttered home. His youngest child visited
once and had never been back. His relationship with his ex-wife remained
strained. The impact of too much clutter was significant in his life.
Well there's two boys and they want their dad, and their mum took them away…. my youngest he asked me why I didn't take him and then he came to my house and didn't come back… I know my ex hates it [the clutter].
Noah’s clutter also got in the way of maintaining a relationship with his girlfriend.
His collection of lawnmowers was commented on in one instance:
I know my girlfriend hated it, that's why she mainly left me too. She said ‘oh every time you clean up I want to bring Jess in’, that's her daughter, ‘to play in the backyard but I keep seeing lawn mowers appearing.
Like Noah, John was also divorced and a parent, having one son from the marriage.
But the relationship between John and his ex-wife was strained when John’s
clutter became so extensive that he was not able to have his son stay over.
It was slowly getting more and more cluttered and I used to have my son over quite regularly at the time and it was getting harder and harder for him to have free space in there. I think it got to a point in about 2007 that I couldn't have him over there really….He was spending time over there but he couldn't really stay there, couldn't really sleep there. So that caused a bit of extra frustration between the ex-partner and myself and him because he wanted to come over and spend time with me.
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As his management of the clutter improved, John in turn mended the relationship
with his son and his ex-wife. At the time of interview, John drove his son to school
every morning and sometimes picked him up again after school.
Every day I'm taking him to school in the mornings and one day in the afternoon I pick him up. Usually every week. I see him on the odd weekend. Most times lately it's been at his mum's place when she's gone out or gone away for the weekend and I've been invited over there to stay.
Friendships and socialising were also significantly impacted by the cluttered
environment. For example, Marcus noted how his social world expands when his
clutter is better managed. He had made some progress with sorting out his
possessions and had been able to live a less cluttered life. This had improved his
ability to maintain relationships with others as he could invite them into his home.
However, he remembered times when he was lonely and felt he had no life
because of the clutter. “I didn't have a life because no one ever got past the front
door literally, because it was just so chaotic.”
Marcus now felt comfortable to have a couple of very close friends visit but it was
still a struggle sometimes when his home was not as organised as he would like.
She (friend) comes over to my place occasionally now …it might look a little bit chaotic and I'll say to her ‘look just not been coping too well’. That's fine because she'll walk in other days and it'll be wow.
Allison’s family was still intact but relationships were strained. Her husband and
her four children (all with special needs) kept her busy. Allison worked hard to
keep on top of her mothering role and placed a great deal of importance on her
relationship with her children. Their needs were not easy to accommodate.
It’s chaos…..’Mum I need this’ ‘mum I'm hungry’, ‘where's this’, ‘where's that’, ‘I'm tired’, ‘I need a bath’…. It's like a cyclone. So when they come home from school I have to be 100% focused with them.
Allison explained that they used to entertain guests in their home and family
visited all the time. Now no one visited except support workers. Allison visited
her mum because it gave her an excuse to get out of the house. Allison explained
that she was not embarrassed when her mum visited. However, Allison had
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recently had a bad experience when her sister-in-law decided to visit at Christmas
after not having been to the home for many years. “My sister-in-law came
Christmas eve because she wanted to give us presents and apparently she was telling
everybody how messy I was and how lazy I was”.
Allison did not react well to the ‘opinion’ of her sister- in-law but did acknowledge
that while she is messy, there is reason, and her extended family did not
understand.
And I'm saying, ‘okay, yes, it's a fact, I'm messy but there is one hell of a lot of underlying stuff about that’. It's like saying there’s an iceberg and we're the Titanic. It looks like a little bump in the road but did they know how big that iceberg was?
Like Allison, Gillian had concerns about family visiting and had not had her
relatives visit for over 10 years. She was concerned that they would judge her for
living with clutter and wonder why she lived like she did. Gillian felt that her
family would visit just to see the clutter and not to see her. Being of Italian
descent, Gillian also mentioned that her culture’s emphasis on keeping a nice
family home would make the situation worse.
So, I haven't had an Italian relative here, oh my God, I haven't had an Italian relative, meaning from my community of Warrigan, in over 10 years. It's hard because they're thinking ‘oh gosh she's dirty, oh God she's got a lot of rubbish, gee why do you keep all those plastic bags’. I can imagine people saying that and I'd find it hard because people are judgmental…. and that's why I'd be worried. I'd be worried that one relative would tell another relative and then it would, not that they'd do it nastily, but it would just come out.
At one point in the interview Gillian, whilst worried about her husband, described
her husband “as a bit of a collector” and showed some of the books and board
games he had collected. His collection however was small in comparison to
Gillian’s clutter but still caused him to not find things.
I think Graham suffers a bit too. I'd like to have Graham in a place where for example he doesn't worry about having to get replacement books because he can find the books that he's got or he doesn't have to scramble getting clothes because it's all neat and ordered.
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Patricia was no different to the other participant’s. She too did not have people
visit because she was embarrassed about the clutter. She felt isolated because
there was a time in her life when she could have people over and entertain and it
was something she really missed.
I don’t invite people home to my place, I’m too embarrassed…..It feels isolating and that’s really hard and people will say to me ‘you used to have really good dinner parties, why don’t you do them anymore?’ And I don’t even say ‘it’s because my place is always a mess.
Some participants had a small group of people in their lives who they were
comfortable with visiting their home. For example, Gillian’s gardener, as well as
her friend who helped cleaning inside, had both been to the house many times and
knew what the home was like. She stated that she did not feel embarrassed having
them come to the property to work: “I had the gardener over this morning. He's
pretty much aware of what my house is like so I don't have that shame.”
4.3 “I may look like I’m doing nothing but really, I’m super busy”: The efforts of everyday life
For the participants of this study, moving around the home, cooking a meal, or
having a shower required huge effort. The struggle of climbing over mountains of
clutter, or moving stuff out of the way before they could do something simple like
make a cup of tea, was tiring. Finding things amongst the clutter was time
consuming and required both a physical and mental effort. The participants were
“super busy” just attending to the basics of everyday life. This super-ordinate
theme expresses, in the words of one participant, the struggles and effort it takes
to manage everyday life in a cluttered environment.
Getting things done
This theme captures the efforts of doing activities of daily living in a cluttered
home. Participants shared just how challenging these everyday tasks were:
….just to be able to do the simplest of things like have a cup of tea or make some toast and stuff like that….It's exhausting (John).
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So then it becomes hard to find bench space to actually prepare meals as well (Gillian).
It’s difficult to clean the floor, to do a proper vacuum so vacuuming often sort of gets put off because it’s like oh well I’m not going to get much done anyway (Patricia).
Figures eight and nine illustrate how even moving around the homes required
effort. There were narrow hallways, cluttered pathways and limited access to the
majority of rooms in participants’ homes. Not being able to move freely around
the home made it hard to get things done.
It makes it a bit hard to navigate things at times, yeah…..It's hard. If we're in the corridor, my husband and me…he has to move into another room so he can get past me. So two people can't get past each other in the hallway (Gillian).
It got to a point where I wasn’t just walking over stuff, I was walking on stuff. It would be like, you know how it’s an effort walking through the bush to get to the camping site to set up your tent? It would be like that going to bed (Marcus).
For Allison, the clutter had become such a barrier to getting things done, that she
was overwhelmed about all aspects of her life as everything took such effort: It’s
too hard here, I can't do it. I want to do it, I don't want to have an attitude, and I
don't want to say I can't do it but it's just really, really bad (Allison).
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Figure 8 – Allison’s Hallway
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Figure 9 – One of the rooms in Marcus’ house.
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Figure 10 - Allison’s Kitchen
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Finding things in the mountains of clutter: “You need a… homing pigeon device”:
Finding things in the cluttered environment was a significant challenge for
participants. While some participants may know the general location of their
possessions, the ‘mountains’ of clutter in their homes meant that a great deal of
effort was spent searching through stuff in that location. Others had a large
amount of stuff but it was ordered, for example in plastic containers in hallways or
other areas and they could generally describe the contents of each container. In
contrast, others had simply lost track of where things might be altogether.
“It’s difficult to find things. I’ve got mountains of things…” (Patricia).
“I cannot tell you where it is. I have no memory of what happened to it. You need a friggin’ homing pigeon device on it like an alarm…” (Allison).
For others, the mountains of stuff meant that they rediscovered possessions they
had not remembered having. For example, as Noah walked through his property
he explained that finding things could bring excitement:
“It's exciting for me sometimes because I've got different things to do and sometimes I'll get something out that I haven't seen for a few years.”
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Figure 11 – Noah’s backyard
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Making decisions about the stuff of life
Making decisions about stuff, as well as about managing other aspects of life, was
overwhelming for many participants. Whether to collect, discard, clean up, recycle
or sort, was a great challenge discussed by most participants.
There were different levels of decision making happening regarding their
possessions. For some it was too overwhelming to make decisions about what to
keep and what to discard. For others, it was a learning curve and they were trying
to think about what needed to be done and how they were going to do it.
Sometimes decisions were made about what to keep and what to discard because
authorities such as housing providers or local councils forced the person to clear
out their clutter.
With the support of Craig from one of the non-government organisations, John
faced the challenge of making decisions to change his current situation by clearing
and sorting his home to make doing everyday activities easier.
I got to the point where I was trying to work out how I could actually deal with starting the procedure of cleaning everything up, how I could actually move myself out of that situation….My next plan was to get the fridge out of the house, but Craig and I have been working on sorting out the paperwork and a lot of the clutter that's in the house.
While some participants like John took the initiative to make autonomous
decisions albeit with the support of others, Patricia was forced into decision-
making mode following a letter of authority from New South Wales Housing.
Patricia had been forced to decide what to clear from her garage as the amount of
clutter in her garage was deemed a fire hazard and she was ordered to clear it.
She too had help from friends.
And ah yeah the garage… yes it was really bad. It was from floor to ceiling. It was literally full, yeah it was pretty bad. That was like that for a few years and then Housing did an inspection and put a note on my door saying I had to clean it out because it was a fire hazard. So we got a skip and there was some furniture in there so Marcus (another participant in this study who was Patricia’s friend?) and another friend came out and took all the furniture out for council pick up.
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Marcus had received support from his case manager, helping him with his
decision-making skills. To make decisions about whether to bring more stuff into
the home, Marcus had learnt to ask himself several key questions:
I used to have….among the things that I've been taught and I try to do is if I buy something or I find something, say council pickup…. two questions. First question, do I have somewhere to put it? If the answer is no, my second question is what am I prepared to throw out in its place to put it in this place and that's what I'm doing.
Another participant, Noah, spoke about his thought processes when faced with the
urge to collect more things, or in his words, more “rubbish”. He made decisions by
thinking through the issue logically when faced with an opportunity to bring
something home.
I'd put a quick thought to this rubbish, like where's it going to go and I'll find a place and then I take it. But if I couldn't find a use or a place I wouldn't take it….If there's a radio, a stereo and I think ‘I've got that old one at home’ then I'll say ‘oh my friend wants one’, so I'll take this one for me and I'll give him my old one that's been used…. Yeah, I can make the decisions but sometimes I just leave it.
Other participants had trouble making decisions pertaining to other aspects of
their lives, such as what to wear, and how to perform activities of daily living. For
example, Gillian found making decisions difficult and overwhelming especially
when it came to self-care. As a result, Gillian said she “cut corners” with her self-
care routines, which went against her values.
I cut corners sometimes with personal care. So I might wear something... and I'm quite sensitive about this…. I might wear the same item of clothes every day for a week or two because it's easier than making a decision about what to wear. It’s just easier to throw on the same thing.
As well as impacting her hoarding behaviour, Gillian’s generalised anxiety also
impaired her ability to decide what to wear, which in turn stopped her from
showering.
I wish I was more organised with dress organisation. Sometimes I find that so hard, sometimes I don't shower. Sometimes my personal hygiene gets affected because it's overwhelming to think ‘well what am I going to get, where am I going to get it from?’ and I wish I was better in that way, that I could have a
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shower every day and I knew what fresh clothes, what to have and what to sort of not have.
While Gillian’s decision not to shower or change her clothes impacted her personal
hygiene negatively, it had the positive impact of reducing the anxiety associated
with making a decision about what to wear.
Routines and Procedures
This theme demonstrates the routines participants had to put in place to live in a
cluttered environment. Some routines followed a daily schedule of what time to
do certain activities, while other routines were more haphazard and just
happened whenever needed.
Allison had many “rules” which she believed helped her effectively manage to live
in her cluttered home. Allison had more routines than any other participant. This
could be because she had a husband and four children living with her, which was
unlike any other participant. There were routines around meal times, getting
ready for bed, getting ready for school, maintaining the triplets’ clothing, and
running errands for her husband.
Now with the dishes, that's the only priority I've got. At 1.30pm, you've got to clean up the kitchen because cleaning the kitchen time is 1.30 to 2.30pm every single day…. If the dishes don't get done that day the rule is you must get up at 5.30 the next morning and do those dishes. 6.30 is breakfast, 7 o'clock is my shower and 7.30 is get the kids ready for school. So 7.30 to 9.00 is getting everyone ready but you can't be having your breakfast or your shower and you can't be cleaning the kitchen. So I've got that worked out that schedule…That's the Allison rule of the house.
John was very detailed about the routines and procedures he had to develop to
manage everyday tasks.
…having a shower, the stuff I've got to move out of the way of the cubicle andturn the hot water heater on, make sure that that's on, prepare myself hours before I'd even do something. I've got to go through the whole routine of preparing it and if I'm not focused and I miss some step then the whole activity falls apart.
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John talked about his ad hoc cleaning habits which made him feel angry with
himself. He went on to talk about the routines he went through to do things and
felt out of control if the routines were not followed.
I think it's also a lot of ad hoc cleaning and making sure that I'm not making extra mess while I'm doing things and I think that's part of the involved process. It's really maddening when you think about it. When I'm thinking about it now, the routines and stuff that I've got to go through just to be able to do the simplest of things, that's one of the things that's hard to take yet it's what I've got to do. If I don't then everything's just out of control at that stage and then it becomes further a problem.
With help, Marcus was trying to learn new habits and form routines that would
enable him to deal with the groceries when he comes home from shopping.
However, he had problems deciding where the items he bought should go and
required assistance making those decisions.
We are slowly teaching me, with shopping, when I come home, I'm trying to get in the habit of carrying the groceries all the way to the kitchen instead of just dumping everything in the bedroom …. I don't even unpack stuff. I just leave it near the kitchen door, in the kitchen or whatever. It’s fine if it stays in shopping bags till my support person gets there to decide that ‘yeah, we need to put this in the cupboards’.
Patricia’s routines were effective at maintaining her work role and caring for her
cat. She spoke about getting ready for work, the tasks she performed at work, and
feeding and walking the cat when she gets home, with each aspect timed during
the day to ensure things get done.
I get up about 6 am, shower, feed the cat, and go to work. I'm usually at work by about 7.00. I like to be at work around 7 o'clock. 1) I can get a park and 2) I get a lot of work done between 7.00 and sort of that 8.00/8.30 beforeeverybody starts coming in and the phones start. Yeah, depending on what I've got at work, whether I've got meetings or groups or things, I do my work and then I'd probably go home sometimes around 3.30, sometimes a bit later, it could be 5 o'clock. It depends on what I'm doing. Go home, feed the cat and take her for a walk.
Allison finds dinner time the most stressful time of the day. She needs to eat first
because if she does not she cannot concentrate on the kids’ meal time. Her
husband eats when he is hungry. To complicate the routine all family members
eat something different. To cope with the evening meals, Allison’s strategy is to
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have something she can put in the microwave and eat before she tackles the rest of
the family. “So I eat a lot of Lean Cuisines and a lot of those meals and like I said
5.30 they're in the microwave because that gives me routine for my meal and I can
actually cope.”
In contrast to the other participants, Noah who loved all his clutter, had a less
specific routine, and spent time outside the home as a regular part of his routine:
“I run around and organise it [the house] and get it liveable. Have a wash, go eat at
‘The Kitchen’ [a community facility], and go get my medicine, go to the doctors, stuff
like that.”
Getting help
At the time of interview all participants were receiving a service of some kind to
assist them to manage with everyday life.
John received support from a non-government organisation in relation to his
mental illness but would not let anyone home visit. More recently he felt he had
hit rock bottom and after 12 months of seeing his case manager, he decided it was
time to open up about his hoarding behaviour.
Well I need to get help and the only way I'm going to get it is just open up and be open, be honest, just tell everything as it is. I figured once I started doing that then essentially one thing led to another and it got down to the fact that I was living with a hoarding disorder issue.
Gillian has a friend she met at a group program who helped her. Apart from her
husband, he became the only other person who saw the inside of her home on a
regular basis. Gillian was embarrassed that she needed help with household
chores. In most other areas of her life she saw herself as being able to function.
She saw a psychologist who on a couple of occasions made a home visit. Her
friend Sheldon assisted with some of the tasks she found overwhelming, such as
doing the laundry. “I find laundry overwhelming because where do I put all the clean
clothes and the processing time to put clothes away is something that I lack. So
Sheldon does that.”
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Gillian found her psychologist helpful for many things but overall she wished she
had long-term practical help to sort her possessions. She once hired a professional
organiser with limited success. “She put labels in my pantry. That worked for a
while but then I still went back to having things on the bench”.
Marcus was adamant that he did not want someone to come in and just clean. He
wanted to learn skills that would enable him to work on not bringing more items
into the home, and decluttering and organising current possessions.
I don’t want anyone coming in to clean. What I want is people to come in and work with me so I can learn the skills. I don’t want to be seen as the ‘poor thing’ or whatever while someone else is doing all the work around me.
Allison found it extremely difficult to cope since the birth of her triplets and has
had some form of help around the house since that time. Initially it was just the
nanny whilst the triplets were babies. It was during this time that Allison
perceived that there was some organisation in the home. “So my nanny was super
nanny. She had six of her own children, she would counsel me into how to do things”.
After the nanny was no longer available, things got worse and the hoarding started
to take over the house. At this point, Allison sought more help from government
community agencies.
I said ‘I've got four children with disabilities, can I get home care? They said ‘you can’ and I went ‘jackpot!’ The manager came out here, she saw how bad it was, and she said ‘you can get home care twice a week’.
Patricia was helped by a hoarding-specific service in her area as well as receiving
help from her good friend Marcus (also a participant in this study). However, with
her busy work commitments she struggled to find the time to work with her
support person.
Getting regular time with Catholic Care, it's been a problem for them because they like to have a regular time every week and I've only got I think two Tuesdays a month when I'm not working. The woman that comes to support me can be there only on a Tuesday so yeah, they're doing their best to fit into my schedule.
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Patricia’s support person gave her homework to complete in-between home visits.
“A lot of times she'll identify stuff and say ‘look you go through that before next
week’, so I'll do that. If she says do this, this and this, I'll get that done”.
Noah received services and support but did not talk about them. He identified that
he had a care coordinator with the local community mental health service and a
support person from one of the local non-government organisation.
4.4 Organised disorganisation: Adapting the environment to get things done
Although a cluttered environment looks disorganised to outsiders, participants
spoke of the organisation that existed within their seemingly disorganised space.
Participants had developed strategies to get things done by adapting the spaces in
their home environments to enable participation in daily activities despite a
cluttered home. For example, while homes had the overall appearance of being
severely cluttered, there were pockets that were more organised than other
spaces. In other instances, organisation to complete tasks required relocation to
non-typical places, for example washing up in the garden using the outside tap.
Isolated pockets of organised spaces
Whilst the overall look of participants’ homes was cluttered and seemingly
chaotic, for some there were small pockets of organised spaces.
Marcus had many collections and was an avid collector of ‘Dr Who’ figurines. With
excitement in his voice, Marcus described how, with the help of his support
worker, he created “order out of chaos”, by reconfiguring his Dr Who figurines in
an organised manner in a display case (see Figure 12).
At one stage it was really chaotic but then one day I was able to spend two hours while my support person was there and I was able to create order out of the chaos. All the Dr Who stuff was on the shelves but it was just all sideways. I was able to put this in this section, the dalek in that section, the little figurines in that section. I started to create order ….The display case had order but it was chaos and I just started grouping out the chaos and by doing that, making groups, I turned the chaos into order.
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Figure 12 – Marcus’ display case
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When space was shared, some participants worked hard to bring order to the
environment. For example, Gillian who shared her home with her husband, had
organised areas in her home. She kept her bedroom mostly clear of clutter. The
bed was accessible, nicely made and had no clutter on it because she needed to
keep it this way to share the space with her husband. However, there was clutter
on her dressing table and around the edges of the room. (see Figure 13). She
noted, “I've got pockets of organisation”. Gillian also had a functional kitchen with
some organised and clear spaces on the benches for meal preparation (see Figure
14). This was achieved with help from a friend. They worked together to keep the
kitchen, another shared space, this way.
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Figure 13 – Gillian’s bed and bedroom
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Figure 14 - Gillian’s kitchen
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Out of all the participants, Allison was the most organised person with several
pockets of organised spaces throughout her home (see Figures 15 to 19). Figures
15 to 19 depict a small room in the home off the lounge room that Allison keeps
extremely ordered compared to the rest of her home. This room holds her
children’s clothes. It is a room that no one else in the home is allowed to enter.
Without this level of organisation, Allison described trying to manage the dressing
of her triplets and her other son as absolute chaos. She also described their
clothing as being “simple” in comparison to her own clothing situation. Allison’s
clothes spilled out from her wardrobe onto her bedroom floor. “I'm excited to be
able to show you all their clothes, like because it's the kids it's easier because their
stuff's just simple…the one lot of clothes…. but with me it's just so much peripheral”.
Figure 20 depicts the cubicle style shelving just outside Allison’s laundry that
contained the necessities to ensure her children’s clothing was well laundered and
ironed. The internal part of the shelving is the other well organised area of
Allison’s home. Washing and having order with clothing was extremely important
to Allison.
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Figure 15 - Allison’s organised room off the lounge area.
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Figure 16 - A close up of a drawer revealing clear organisation of items
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Figure 17 – A cupboard in Allison’s organised room off the lounge area
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Figure 18 – Hanging space for childrens clothing in Allison’s organised room off the
lounge area.
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Figure 19 – A close up of another drawer showing children’s clothing in Allison’s
organised room off the lounge area.
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Figure 20 – Shelves outside the door of Allison’s Laundry
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Allison also had a colour assigned to each triplet so she knew which boy was
which and which items belonged to each child. They only got to wear the one
colour of clothing, and they each had an iPad with a cover matching their assigned
colour. They all had their school bags, pencil cases and lunch items to match their
assigned colour. While Allison was able to make decisions such as the colour
coordination of her children’s items, her problems related to the initiation and
doing of tasks.
Tomorrow school starts. So in the other room there is the old school bags, four, brand new school bags….four…. and inside the bags I've randomly put what needs to go, like there's four drink bottles in one bag, there's four pencil cases in another and pencils. They're all there but to sort it that's just mind blowing…. because I've got to get all the drink bottles with a label, all the shoes need labels and you've got to put the pencils in the right colour in the right thing.
Marcus has developed a strategy to help sort through his stuff by setting up what
he calls work stations. One is in the lounge room and one is in his bedroom. These
work stations allow Marcus the room to sort through and order items in a way
that makes sense to him. It is his method of making head way through the clutter.
I've got a little table setup now….I've got one in my bedroom and one in the lounge but each one's for different work. The one in my bedroom and it's piled with files. Marvel files…the marvel files are out once a week…. the one in the lounge room that's got all CDs and DVDs so I'm using it like a workstation. I'm starting to progress this way.
Patricia is trying to develop strategies and systems for organising but is not quite
there yet.
I’ve got a lot of DVDs… um I’ve been developing a system of putting them on the shelves in different genres and things like that but I’ve noticed that I’ve got you know DVDs over here and up there and sort of all over the place that haven’t been catalogued and put away…. and the shelving system, which I had put up to help me organise that space,.…itself has got cluttered with books … and all sorts of things. I noticed this morning I had a Carlton football sitting there and I’m like ‘I got so much stuff all over the place’ but… I don’t want to throw any of it away.
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Relocating tasks and resources
Another way participants showed their aptitude to organise in an otherwise
cluttered space, was by relocating tasks and resources to another space when an
area could no longer be used for its originally intended purpose. Participants
spoke of how they had to adapt their homes by utilising and moving objects to
make something suitable for a new purpose or by moving the location of where
they do particular tasks. For example, if the dining table was too cluttered to sit at
for meals, they might use a fold-out table, or sit on the lounge. If unable to sleep in
the bed due to clutter, rather than clearing the clutter away, they might sleep on
the lounge instead. If unable to access the kitchen, a microwave could be set up in
the lounge room. If the kitchen sink was full of other items and not clear to use for
washing up, then paper plates and plastic cutlery could be used.
When the home became too cluttered, tasks might also be relocated outside or to a
community setting. For example, John washed the frypan outside at the garden
tap. Other tasks were also taken outside the home. Instead of clearing a space to
make a cup of tea, some participants would wait until they attended a group or
visited a friend where they could make their tea. Many ate takeaway food or
visited restaurants rather than try to cook in a cluttered kitchen. For example,
Gillian mentioned:
It's easier to go to a restaurant like I did last night. I was at my friend's house and I had to have something for Graham. I'd eaten beforehand at my friend's house, so then I just got a takeaway for Graham. So I use takeaways a lot, pre-prepared food.
Allison liked to do craft and sewing. Not having the space at home due to clutter,
she would go out to craft groups instead. From outside this lookes like normal
social activities; attending social and craft groups, and visiting friends. Yet for the
participants they were part of complex solutions related to completing everyday
tasks when space at home was cluttered.
The cluttered space is a constant reminder of the challenges they face. Allison
mentioned spending her “spare time” away from the house, and planned many
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activities external to the home so she did not have the constant reminder of her
chaos and did not have to manage the clutter at home to enjoy her activities.
The only way I can fit them in is if they’re external, like sewing is at Leanne's house, art and crafts in town at 2 o'clock….I found a scrapbooking group that lets you scrapbook with them and have coffee on a Tuesday, so after Easter when I complete my course I can do that. And see that to me is the ultimate in fun.
Others also managed their space and adapted their environment to enjoy life.
However, not all participants needed to relocate to external places to complete
enjoyable tasks. For example, Marcus was able to feel good about himself by
having his flat appear clean when others were coming to visit by relocating all his
clutter from the lounge and kitchen into his bedroom.
At one stage we always said our trouble was more with the bedroom so we’d get the lounge room done. But in the end I would have shut the bedroom and no one went into the bedroom…. People didn’t realise, they would come in and think ‘oh wow, the lounge room looks great! The kitchen looks great!’ Right, do you know why the lounge room and the kitchen look great? Everything has to get thrown into the bedroom and then shut the door, out of sight. What people don’t see, people don’t know about right?
Marcus had also modified his kitchen, allowing him to have more room in the
kitchen despite its clutter.
So I've got this wood over the top of my stove as a bench because I've got a very small kitchen because I'm doing a lot of microwave cooking, so I really don't need to use the stove, so I've turned that into a bench. All I ever use is the oven really or the grill.
Other participants noted times when their organisation of space at home was
more ordered than at other times. For example, Patricia liked to entertain and
when she had managed to have some organisation in her home she would invite
friends over. However, at the time of interviews she had accumulated a lot of
clutter and was not able to use her dining table. So not only did Patricia need to
relocate the task of sitting to have a meal, she was also not able to entertain.
Well I do have a dining room table but it’s got lots of stuff on it and it’s one of those ones where the sides fall down. It’s actually sitting against a wall with a whole lot of stuff on it. So I’m actually eating off a plastic… you know… a
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fold out table where you pull the legs out. I’ve got a table cloth over that. That’s what I eat off at the moment.
Of all participants, John had been the most creative in relocating tasks and
resources to participate in activities in the home. When the clutter had consumed
most spaces at home, he said he was “basically living of my couch, sleeping, eating,
everything in the one area in my house”. At this time, John said he could not use
his kitchen as he could barely get in there. John spoke of how he had to be creative
and relocate resources to enable task completion:
I just recently got one of those Sunbeam electric frying pans and I've had to put that on top of a DVD cabinet I had which stands about three or four feet off the ground. I've had to put a sheet of stainless steel on top of that and then put it on top of that and that's where I've been able to cook using that. I've still got to clean it in there, make sure I can take it outside, make sure I can wash it under the tap outside. That's heat up water that's in it to clean it, put the washing stuff in the frypan, turn it on, get it to the point there, clean it in that stage, take it out and rinse it out under the tap outside.
While some participants managed their cooking by relocating the task to an
alternate space, or eating takeaway or going to restaurants, Noah liked to have a
healthy home-cooked meal. Unable to make it for himself at home due to the
clutter in the kitchen, he instead attended a local charity that provided home style
meals to those in need.
I want to eat, like I want to cook too but I just don't, it's a bit cluttered at the moment. Because I like home-cooked meals and I'm not real good at it because I've really got too much thinking going on, so I go to the soup kitchen… then I'm happy there because I can see someone's cooked for me, like I get real enjoyment out of knowing the food's more healthy.
4.5 Summary
Chapter 4 has presented the findings of this study. Participants stuggled with
relationships with themselves, others and their possessions. Getting things done
was an effort as was deciding what to do with their ‘stuff’. However, participants
had pockets of organised spaces amongst the disorganisation of the clutter.
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Chapter 5 provides a detailed discussion of the findings in relation to the literature
and identifies the new perspectives this study brings to research and practice in
the field of hoarding.
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Chapter 5 Discussion and conclusion
5.1 Introduction
The overall purpose of this study was to develop an understanding of how people
living in a cluttered environment accomplish daily occupations. In developing this
understanding, this study sought to fill the gaps in the literature which has
traditionally outlined the things people cannot do in a cluttered environment and
the impairments that drive hoarding behaviour. My supposition when embarking
on this study was that people must be managing daily occupations because they
live in their homes (often for decades) and somehow do the things they need to do
despite the clutter. The findings of this study show that people who live in a
cluttered environment can manage daily occupations, even if not in the ways most
people would consider ‘normal’.
The findings of this study are summarised in this chapter and discussed in relation
to existing research and literature. This chapter also examines the implications of
research findings for practice, policy, education and theory, identifies future
research opportunities, and outlines the limitations of the study.
5.2 Summary of research findings and discussion in relation to the literature
Ayres (2012) looked at a late life sample of people with hoarding behaviours and
functional impairment using the Activities of Daily Living Scale (Hoarding) (Frost
et al., 2013), and found moderate to substantial impairment across multiple
functional domains. Concluding the study, Ayres (2012) suggested ADL
improvement in older adults with hoarding behaviours is an important treatment
target. Ong’s (2014) systematic review reported more research is required to
explore and clarify the association between hoarding and function, and that
understanding this relationship will be instrumental in developing treatment
protocols that will ultimately enhance the well-being of people who have hoarding
behaviour. The findings of this study have shed light on all of the above issues,
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providing new knowledge about daily life for people with hoarding behaviours
living in a cluttered environment, and confirming results from previous research
on several other issues.
What is the lived experience of living in a cluttered environment and managing to complete daily occupations?
This study identified that the lived experience of participants was significantly
shaped by their hoarding behaviours and the consequential outcome of living in a
cluttered environment. The super-ordinate theme Clutter and relationships and the
relationship with clutter and its associated themes best answers this particular
research question and reveals the meaning of these behaviours in relation to
participants’ past, their present, their overall identity, and their relationships with
others over time.
For participants in this study, hoarding behaviours started at a crucial point in life
and were related to having lived through a traumatic experience, such as the
passing of a parent, sexual abuse, or spending most of their childhood in an
institution. There was a consistent pattern of participants’ past experiences being
directly related to present hoarding behaviours.
Collecting and saving possessions had become an occupation that provided
feelings of safety, security and comfort along with a meaningful occupational
identity. This was summed up in the theme “I’m a collector”: Clutter and identity.
Yet given the chance, most participants said they would change the way they live
and swap the clutter for less stuff and more organisation. Therefore, they
identified that this way of living was not an easy one.
Hoarding as an occupation resulted in relationships being put under tremendous
strain with the breakdown of many relationships being the inevitable outcome of
the hoarding and the clutter. Participants put their clutter first and endured the
loss of important relationships through divorce, arguments with others and, in
some instances, the loss of relationships with their children. Hoarding behaviours
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brought with them isolation and loneliness. Feelings of shame, guilt and
embarrassment meant people did not want others to visit the home. Instead
participants visited family and friends at their homes. These findings provide
support for previous literature, as well as provide new insights into the
occupational identity of people as “collectors”.
Linking past experiences with present hoarding behaviours fits with literature
related to hoarding and trauma. Five of the six participants in this research started
collecting possessions after a traumatic experience. Trauma studies have found: (i)
links between trauma and hoarding are associated with the severity of hoarding
symptoms, in particular collecting (Cromer, Schmidt, & Murphy, 2007; Frost et al.,
2011; Landau et al., 2011; Samuels et al., 2008; Saxena et al., 2011), and (ii)
cumulative trauma can increase severity of hoarding symptoms when experienced
prior to symptom onset (Landau et al., 2011). The participant that provided the
most extreme example of trauma-linked hoarding behaviours was Patricia, who
after complex and severe childhood trauma developed her hoarding behaviours.
To this day, Patricia’s collecting is an effort to build a safety zone and early warning
system in and around her home, to alert her to any intruders.
Participants in this research describe their clutter as being who they are, their
identity. They become overwhelmed making decisions about what to keep or what
to discard, as the meaning they attach to their ‘stuff’ expressly identifies who they
are as a person.
This finding supports those of Kellett et al (2010) who reported chronic and
prolonged hoarding altered a person’s sense of ‘who they are’, blurring the
boundaries with ‘what they own’, and thus referring to themselves as ‘hoarders’.
Kellett et al (2010) went on to say that, “This sense of fusion between people who
hoard and their possessions, appears to be an area for further research, as such a
factor may partially explain the low rates of help seeking and/or poor treatment
responsivity previously recorded” (p. 150).
However, further to Kellett et al’s (2010) research, the findings of this study
provide a unique view of hoarding as an occupation that contributes to an
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occupational identity, but reveals that it is not the sole identity of participants. All
participants continued to perform other everyday tasks and continued to
participate in other home and community occupations. Several participants had
hobbies. Three participants had established productive or work occupations as a
manager, a student and a consumer advocate. Five of the six participants
expressed wanting identities that separated them from being ‘collectors’. This
finding provides hope that while people may identify as collectors, and have
hoarding as an occupation, they still engage in and find meaning and purpose in
other occupations. This finding provides a potential way forward for possible
services that might assist people to expand their identity or create a new identity
beyond that of a collector, thus providing a meaningful focus to life outside of the
occupation of hoarding.
This is a new contribution to knowledge. While there is no research yet to
substantiate the possibility that having an occupational identity that includes a
wider variety of meaningful occupations, there is personal anecdotal evidence that
supports the notion of alternative and expanded identities being helpful in
reducing hoarding behaviours and facilitating discarding of possessions. For
example, one participant, John, was encountered post data collection at a
conference on hoarding. He keenly spoke to me about his new role as a member of
a hoarding and squalor working party forum in his local area as a consumer
advocate. The “Buried in Treasures” working group is named after the self-help
book of the same title (Tolin, Frost, & Steketee, 2007). John spoke about how being
involved with the group had given his life a new focus, meaning and purpose. He
was beaming about how he is going to co-facilitate future “Buried in Treasures’
groups and help others with hoarding behaviours. John also presented at this same
conference about his involvement with the forum and how the ‘Buried in
Treasures’ self-help group had allowed him to move forward with his life by having
a reason to get out of bed and was the impetus to work on clearing out his home.
But best of all, a new-found identity has meant John has been able to focus on
discarding and he reported having more than half cleared his home of clutter
which had enabled him to move back into the main house from the shed.
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Conclusions drawn in the literature around the challenges hoarding places on
relationships, often to the point of breakdown, are supported by the findings of
this research. It appears there are challenges from the perspective of both parties:
the person who hoards and their family and friends. Wilbram et at (2008) and
Sampson (2013) in their research of carers/family member of people who hoard,
both asserted disruption to family and social relationships was evident. This
breakdown and loss of relationships goes both ways. Sampson (2013) found that
family members of people with hoarding behaviours also expressed sadness, loss,
and grieving for a relationship that once had meaning. Eleven of Sampson’s (2013)
twelve participant carers described feeling hurt that the person with hoarding
behaviours would often choose their possessions at the expense of losing
relationships with their family members. Also, findings from Kellett et al’s (2010)
study on the lived experience of being a hoarder, discussed how the person who
hoards felt shame and stigma when people who came into their home did not
understand their hoarding behaviours. It may be that this causes them to actively
avoid inviting people into their home, contributing to relationship breakdown.
The relationship between families, carers and services can also break down.
Carers living with the person who hoards and family members living separately all
expressed feelings of alienation by services leading to carers/family members
feeling isolated and not understood by services. Further, Sampson (2013)
reported a lack of understanding of hoarding behaviours led to negative feelings
towards the family member.
Participants in this study not only have relationships with other adults that are
affected by their hoarding, but three participants had young children to consider.
Whilst this study did not include the children in the narrative, only one study
considering children was identified (Tolin, Frost, Steketee, & Fitch, 2008), and
none from a lived experience. Tolin, Frost, Steketee, and Fitch (2008) found
children living with parents who hoard face daily struggles. They are generally
unhappy, have strained relationships with their parents, find it difficult to make
friends because they are embarrassed and feel shame about the condition of their
home and are not able to bring the friends they do have home.
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In a photo series ‘Behind closed doors’ depicted in an ABC News story entitled
“Nebraska siblings relive childhood in hoarding house”, siblings relived their
childhood living in a cluttered environment. The pictures show a human and
emotional connection to hoarding, not just a pile of ‘stuff’. The siblings report they
had a ‘normal’ childhood in that they got to go and play sports, had food, clothes
and shelter, however, this was not in a way that other ‘kids’ had it. They told ABC
News how they had to use the oven to keep warm because the furnace did not
work and how they could not sit at the dining table (depicted on cover page)
(Pelletiere, 2015). Further research considering the lived experience of children
living in a cluttered environment would shed light on this difficult topic.
How do hoarding behaviours and living in a cluttered environment impact on participation in daily occupations?
This study found that the daily occupations of all participants were impacted by
hoarding behaviours and the consequential living in a cluttered home
environment. The super-ordinate theme “I may look like I’m doing nothing but
really, I’m super busy”: The efforts of everyday life and its associated themes reveal
just how hard participants worked to get through the basics at home each day. If
they were caring for, or living with others, it was even more difficult.
Finding things among the clutter is often near impossible although participants
knew roughly where things were. Allison likened finding things to “needing a
homing pigeon device”. Making decisions about whether to discard, clean up,
recycle or sort, was a great challenge. Sometimes decisions were made about what
to keep and what to discard because authorities such as housing providers or local
councils forced the person to clear out their clutter.
Performing the tasks of everyday life required a huge effort and people were
“super busy” just attending to the basics. The simple act of making a cup of tea or
making a meal, going to bed or having a shower involved climbing over mountains
of stuff, moving things out of the way, along with time and energy that left people
drained, physically and emotionally. Only one participant (Noah), whilst having
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difficulties in his environment, found his clutter to be exciting and enjoyed finding
‘new’ things everyday he had forgotten about. Despite all the participants being
challenged by the efforts to get through each day, they still managed to perform
tasks and participate in daily occupations in the home environment, holding down
jobs outside the home in some instances, engaging in study, or caring for small
children and spouses.
Hoarding literature uses terms like functional impairment, functional disability,
poorer global functioning, disability, greater disability, and difficulties performing
daily activities to describe the challenges people with hoarding behaviours
experience (Ong et al., 2015). The participants in this study certainly recognised
that they had difficulties and challenges but did not speak about themselves using
this language of impairment. Instead, the findings of this study provide an original
contribution by presenting the voices of participants and hearing from them how
they manage to live each day and perform their occupations all while living in a
cluttered environment.
It has long been acknowledged that clutter has an impact on people being able to
do things at home, and that people have difficulties with engaging in daily tasks
and performing activities (Ong et al., 2015). But this body of literature and
research has not provided the detail on how people continue to participate
amongst their ‘stuff’. This is the first study to explore these challenges in detail
and then identify how people perform tasks to manage daily occupations. Their
life was not easy, what might seem simple to another person, was complicated to
participants. Kellett et al’s (2010) participants described similar impacts of not
being able to find things among the clutter and feeling overwhelmed and
entrapped by the clutter. They also described avoidance behaviours in relation to
discarding and taking a long time to make decisions about the clutter. The
findings of this masters study are similar and extend Kellett et al’s (2010) work by
looking more deeply into the ‘busy’ nature of their lives and the efforts they
experienced in getting things done.
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Making decisions was a particular challenge for the participants in this study. This
finding is supported by other research findings that have identified challenges
with attention, categorisation, decision making, problem solving, organisation and
memory (Frost & Hartl, 1996; Frost & Shows, 1993; Gilliam & Tolin, 2010; Mackin
et al., 2016; Pertusa et al., 2010). People with hoarding behaviours also display
emotional attachment to possessions, have maladaptive beliefs regarding their
possessions, and have fears about making the worst decisions. As such, a hoarding
diagnosis is now known to be a complex interaction between an individual’s
cognition and emotions (Frost et al., 1995). Again, these previous research findings
are echoed in the perspectives of the participants in this study.
What strategies do people put in place to manage participation in daily occupations when living in a cluttered environment?
The findings of this study reveal deliberate and creative strategies participants
adopt to manage their continued participation in daily occupations when living in a
cluttered environment. The super-ordinate theme Organised disorganisation:
Adapting the environment to get things done and its related themes spoke most to
this question. While they may look disorganised, participants revealed there was
an organisation in their strategies and methods to manage everyday occupations
that may not be obvious to others. The theme Getting help also revealed a strategy
used by participants to continue to participate and to manage their home
environment.
Participants had developed clear structured routines and procedures, although
some routines were still haphazard at best. They showed organisation skills with
the stuff that had the greatest meaning through having isolated pockets of space
that were very organised and easy to access. Other strategies were to relocate
some tasks and resources to new locations inside and outside the home to get
things done. For example, using the lounge to eat or sleep; setting a microwave or
electric frypan up in the lounge room; washing dishes in the garden; or using paper
plates and plastic cutlery. When sharing a cluttered home with a partner or
children there were compromises made so other people could have opportunity to
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perform activities. Going to a restaurant to eat or ordering takeaway at times
replaced being able to make a meal. Other examples included attending a craft
group in the community because there was no room at home or going to visit
family or friends rather than entertain at home. Developing strategies and
adapting the environment enabled participants to keep their families running,
their employment happening and their home secure, allowing participation in daily
occupations despite the clutter.
None of the available research has explored how or what people do to manage
daily occupations in a cluttered environment. The themes Isolated pockets of
organised spaces, Relocating tasks and resource, Routines and procedures represent
a new contribution to knowledge regarding strategies people use in everyday life.
The theme of Getting help adds to current literature surrounding treatment for
people with hoarding behaviours.
That people who hoard have the capacity to have areas in the home that are highly
organised is a new contribution to research on hoarding. However, this finding is
supported by the philosophies of occupational therapy and recovery. In the
occupational therapy literature, it is well known that people are more likely to
engage in tasks and perform activities that they find meaningful and that have
purpose (American Occupational Therapy Association (AOTA), 2014; Australian
Health Ministers’ Advisory Council, 2013). Recovery approaches in mental health
acknowledge people’s strengths rather than their deficits (Australian Health
Ministers’ Advisory Council, 2013).
Therefore, when working with a client with hoarding behaviours, one of the first
tasks that a health professional using a recovery-oriented approach would do is
look at a person’s strengths. In doing so, it would be critical to identify areas in the
home and in their occupational identity where there is structure and organisation
and to build capacity from that point. This research has shown that for some
people, hoarding behaviours are not pervasive across their entire lives and there
are isolated pockets of space that are well organised to support valued
occupations, thus revealing that strengths are very real for this group of people.
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Participants also revealed strengths in the way they relocated tasks and resources
in a deliberate and often creative way to get daily occupations done. Therefore,
the theme Relocating tasks and resource offers a new and original finding by
identifying a strategy used by participants to manage everyday life. Engagement
in tasks takes place within the physical or social environment. Such environments
can support or present barriers for occupational performance (American
Occupational Therapy Association (AOTA), 2014). Typically, hoarding literature
discusses a cluttered environment as presenting barriers to people being able to
engage fully in meaningful tasks and activities. However, utilising deliberate and
creative strategies, participants have been able to support engagement in tasks
and enable performance in activities despite the clutter.
Routines and procedures were frequently used to get things done. This is an
original contribution to the hoarding literature, however is well supported by
literature in occupational therapy about how any person manages their daily
occupations through the development or routines to organise daily occupations to
enable fulfilment of roles (Harvey & Pentland, 2010; Kielhofner, 2008, 2009).
However, when a person does not have the skills to engage in tasks and perform
an activity, and lack a daily routine that works for them, then participation in
occupations will be negatively affected (American Occupational Therapy
Association (AOTA), 2014; Bullock, 2014). In this study, participants engaged in
daily occupations by having routines and procedures to get things done. They
thought about and planned, how they were going to perform tasks before they
could participate in an activity and often had complex routines to do so. Having
these routines helped participants organise daily occupations thus enabling
engagement in roles as students, employees or parents. Therefore, by examining
this finding in relation to occupational therapy literature, it can be argued that the
construction or reconstruction of habits and routines that are effective and
meaningful, so that a person can participate more fully in everyday occupations,
would be one of the goals of occupational therapy.
Participants had various kinds of help from people such as friends and family, or
were assisted by services. In some instances the services were hoarding specific,
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in other instances, these services were general mental health services. The nature
of this help varied. The best help for people exhibiting hoarding behaviours has
been discussed in the current body of research on hoarding. While modified
cognitive behaviour therapy is considered the gold standard of treatment (Muroff
et al., 2011), there is still a need for further research to understand how best to
provide treatment and services. What is known is that people with insight are
more likely to understand their hoarding behaviours and therefore more likely to
seek help, and a modified cognitive behaviour program shows promise to be
successful in such instances (Muroff et al., 2011). People with little to no insight
usually come to the attention of services through other means such as mental
health or aged care services (Bratiotis et al., 2011). Motivational interviewing is
one strategy that may benefit those with little to no insight (Tolin, 2011).
The kind of help participants had experienced did not appear to have utilised
these approaches in a systematic way. Help had been provided on a more ad hoc
basis, and at the participants’ own expense in some instances. Other help had
been funded under programs or through agencies. In all instances, the help was
accepted and supportive, with no participant speaking negatively about the help
they had received. Services were highly valued when they were non-
judgemental and when forced clean ups were not part of the service.
Summary
Whilst some of this research supports the hoarding literature in that participation
in daily occupations when living in a cluttered environment is an effort, this
research offers unique and innovative views of the lived experience of living in a
cluttered environment. This research has been able to add a new and original
contribution in thinking about hoarding as an occupation that is meaningful and
has purpose for the person with hoarding behaviours. As such, this research has
been able to provide a unique addition to the hoarding literature regarding how
people manage daily occupations in the cluttered environment by being the first
study to detail everyday life, strategies employed, and challenges faced. These
findings provide a way forward for mental health occupational therapists to work
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from a recovery paradigm with people, and enabling them to live a meaningful and
purposeful life despite any impairments that may restrict occupational
performance.
5.3 Implications of findings
This is the first phenomenological study looking at how people manage
participation in daily occupations in a cluttered environment. The findings of this
study have illustrated that people with hoarding behaviours can manage daily
occupations and will hopefully guide strategies around how to best support people
with hoarding behaviours.
Implications for occupational therapy practice
It is vitally important to acknowledge that hoarding is not simply a problem of a
messy, cluttered environment. Therefore, there is no quick fix, like a big clean up,
to remedy the situation. Instead, supportive, collaborative strategies and
interventions are necessary to assist people. To date there is no occupational
therapy literature specifically on practice with people who hoard. Therefore, the
findings from this study can begin to shape the knowledge base of occupational
therapists working with this client group by giving the first account of their daily
life from their point of view.
Whilst the following implications for practice are focused on occupation and how
an occupational therapist might be able to contribute, working with a person with
hoarding behaviours can take many years of therapy, and requires a
multidisciplinary or interagency team to provide the needed services and support
(Stark, 2014).
Creating alternate occupational identities
The findings of this study show that the identity of people with hoarding
behaviours is often wrapped up in being a “collector”. Their stuff is more than just
possessions; it is their life, it is who they are. Understanding this sense of identity
may be one possible focus of therapy. Using a model of practice such as the Model
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of Human Occupation (Kielhofner, 2008) which is closely aligned with recovery
principles (Ennals & Fossey, 2009), incorporates a person’s sense of identity, and
links identity to occupation and the environment. Using the Model of Human
Occupation to guide practice could be one way that occupational therapists can
work with people who have hoarding behaviours to broaden their occupational
identities that are separate from the identity of being a collector.
In brief, The Model of Human Occupation, which is the most widely used
occupational therapy model around the world (Forsyth et al., 2014), provides
occupational therapists with a theory aimed at explaining: why individuals are
motivated to choose the things they do (volition); how habits and roles that
organise daily routines are patterned (habituation); and a person’s ability to
perform daily activities (performance capacity) (Forsyth et al., 2014; Kielhofner,
2008).
Having the skills to perform activities and participate in occupations gives people
a sense of effectiveness for what they are doing, builds competence and builds an
occupational identity (Kielhofner, 2008). This study has added knowledge around
most of these concepts and could therefore inform occupational therapy practice
with people who exhibit hoarding behaviours under this model. Some
participants in this study reported they would like to have occupations outside of
being a ‘collector’, and some participants already had ‘other’ occupational
identites. With the knowledge of the role of collecting in people’s self-identity,
occupational therapists working with clients could use the Model of Human
Occupation to drive therapy in the direction of helping people participate in daily
occupations that help achieve a sense of competence and identity outside of
hoarding. This may in turn, assist people to start sorting and discarding some of
their possessions to make room for other pursuits and interests related to their
broader identity.
Occupation-focused recovery
The participants in this study engage in daily tasks and activities that constitute
occupational participation, albeit with some difficulties. They perform activities
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that contribute to the occupation of self-care such as feeding oneself, showering,
brushing one's teeth, wearing clean clothes, sleeping, exercise and attending to
medical concerns. They engage in social occupations such as attending a group
program, going to a sewing class or eating at a restaurant. Several held down jobs,
study and cared for their children and families. This study has therefore found
that people who hoard and live in cluttered environments can manage their lives
and have strengths that can be built upon.
Traditionally, mental health services are influenced by a medical model
emphasising pathology, focusing on impairments and what people cannot do,
which are usually considered chronic in nature and irreversible (Shah & Mountain,
2007). Whilst the research findings acknowledge the struggles and efforts
participants describe trying to perform everyday activities, findings also
acknowledge their strengths. Participants demonstrated strengths in their ability
to organise and build complex routines to adapt their cluttered environment in a
way that allowed them to participate in daily occupations. These strengths can be
harnessed in therapy to promote optimal occupational participation within the
home environment.
Using an occupation-focused recovery informed approach brings together the
person, as the expert in their experience of hoarding, and the expertise of the
occupational therapist. This approach will empower people with hoarding
behaviours to engage in the therapy process with them setting their own
occupational-focused goals that are meaningful and have purpose. Interventions
based on daily activities that fit with the goals developed in collaboration with the
occupational therapist, could incorporate the practical strategies used in the
modified cognitive behavioural program(Steketee & Frost, 2014b) to assist in
development of skills alongside any psychological interventions being used by the
interdisciplinary team.
Hoarding literature clearly outlines the complex executive functioning
impairments that contribute to hoarding behaviours and the maintenance of the
cluttered environment (Timpano, 2014). Occupational therapists have a strong
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skill set in evaluating a person’s occupational history, patterns of daily living,
interests, values and needs that make up their unique occupational profile
(Kielhofner, 2008). One consideration in evaluation of a person’s ability is their
executive function. Evaluation of executive function from an occupational
perspective is at the level of performance during an entire task. Occupational
therapists determine a person’s capacity for function, identifying what a person
can do and how much and what level of assistance a person requires to manage
task performance (Baum et al., 2007). Having a full understanding of a person’s
occupational profile and their abilities allows the occupational therapist to work
within a recovery paradigm that will support the person’s values and goals in a
way that will instil success with task performance therefore participation in
occupations (Cone & Wilson, 2012; Cramm et al., 2013).
Implications for policy/guidelines
There are many guidelines and policies both nationally and local to each of the
Australian States and Territories that guide practice for the delivery of mental
health services and working with people who have hoarding behaviours (see
Appendix 10 for titles). In the Australian context, each of the State’s guidelines for
hoarding and squalor are similar in content, with some mentioning recovery
and/or trauma-informed care and others not. Five of the six participants in this
study have trauma backgrounds linking this experience to current hoarding
behaviours. Guidelines for interventions to support people with hoarding
behaviours need to include recovery and trauma-informed care principles to
underpin interventions.
Hoarding literature presents hoarding as a disorder, a cluster of neurobiological
symptoms that explain why people with too many possessions keep them. This
research has provided a new perspective by examining the lived experience of
people and revealing that hoarding is part of a complex self-identity and in
particular is central to an individual’s occupational identity. Despite the challenges
of living in a cluttered environment and exhibiting hoarding behaviours, people
have developed strategies to remain engaged in daily occupations. For those
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needing and requiring help, occupational therapy guidelines for practice need to be
developed to outline the occupational therapy process and occupational domains
that therapists can work on with clients with hoarding behaviours. Such
guidelines need to address both community and inpatient occupational therapy
practice and incorporate other best practices approaches, such as modified
cognitive behaviour therapy for hoarding (Steketee & Frost, 2014b), within an
occupational therapy framework.
Implications for theory
Theoretical conceptualisations of hoarding are still in their infancy and are thus
evolving. At present, key theoretical concepts around which knowledge is
organised are largely at the level of impairment, particularly including a focus on
information processing deficits. Such deficits include problems with memory,
attention, organisation and categorising. There is also a focus on emotional and
psychological impairments in the hoarding literature and research (Frost, Hartl,
Christian, & Williams, 1995). As indicated throughout this thesis, what is missing
from such explanatory frameworks is an understanding of how people live daily
life, and perform everyday home and community occupations while living in a
cluttered environment as a person with hoarding behaviours. This research has
gone some of the way to address how people manage daily occupations. New
conceptualisations of hoarding behaviours and living in a cluttered environment
can draw upon these research findings. This research has been able to shine the
light on hoarding as more than a compulsion or impairment, and instead
introduced a conceptualisation of the person as an occupational being, of hoarding
as a meaningful occupation, and an essential part of an individual’s identity.
Participants have complex routines to get things done and they relocate resources
and tasks to adapt the environment to fit their needs. More research is needed to
expand theoretical conceptualisations and explanatory frameworks pertaining to
the lives of this group of people from an occupational perspective.
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Implications for education
Universities need to incorporate hoarding as a topic into their mental health
curriculum to provide occupational therapy students with an introduction to
hoarding as an occupation and what to expect when working with such a person.
Educational material developed for a focus on assisting people with their hoarding
should include not only a focus on occupational participation in a cluttered
environment, but include recovery, strengths, and trauma-informed care.
For those already working in services that provide interventions for people with
hoarding behaviours there are workshops available to address hoarding. There
are many group programs around New South Wales and other states for
consumers that are based on the self-help book “Buried in treasures”, written by
prominent researcher Dr Randy Frost. Workshops for staff and the groups for
consumers are mostly based on the modified cognitive model of hoarding and are
thus trying to ‘fix’ impairments in thinking and processing. Findings from this
research can be used to shape education, revealing the occupational nature of
hoarding and the strategies people use to live in a cluttered environment. For
example, information should be included on identity and the relationships with
possessions, and how to draw on the strengths people have in already utilising
complex routines to complete tasks and adapt environments to better participate
in daily occupations.
5.4 Future research
Although hoarding has a history of at least 10,000 years, it is only in the past 25
years that research has tried to classify and identify hoarding behaviours. Thus
far, research has focused on cognitive and emotional impairments (Blom et al.,
2011; Frost & Hartl, 1996; Timpano, 2014). Therefore, the things people cannot do
in a cluttered environment has been the prevailing research focus. This study
shows that despite ‘impairment’ and clutter, people can and do manage daily
occupations and also have many strengths to draw upon. Future research
recommendations are outlined below.
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(i) Expanding the current study of lived experience
This study was a small Masters study with only six participants. Findings are not
transferrable to everyone with hoarding behaviours. Therefore, a larger study
with the same study design could examine the lived experience as done here but
with a larger sample, living in other locations, from different cultures and living
with different comorbidities. Findings could then be compared to see if the same
or similar themes are discovered, and further expand knowledge of the strategies
people use to manage their daily lives and the challenges they face by living in a
cluttered environment
(ii) Hoarding as an occupation and its impact on identity
This study revealed the complex and significant role hoarding played in each
participants’ identity. The findings revealed that the link between behaviours,
identity and possessions was strong. Yet most participants had occupations
beyond their collecting and in some instances performed these occupations in
work and study environments, as well as fulfilling demanding family roles. For
others, the collecting was their reason for getting up in the morning. Therefore,
further research is required to investigate the impact of having a broader range of
meaningful occupations and defined roles outside of the cluttered environment,
and whether this more varied life might assist in building new identities that in
turn have a positive impact on the ability to sort and discard possessions.
(iii) The development and efficacy of occupational therapy specific interventions
Research is required following the development and implementation of the above-
mentioned occupational therapy practice guidelines for working with people
exhibiting hoarding behaviours. Future research needs to develop the
occupational therapy evidence base for working with people with hoarding
behaviours, asking questions such as (i) does using an occupational therapy
framework, such as the Model of Human Occupation, help target participation in
daily occupations that improve function in a cluttered environment? (ii) can the
modified cognitive behaviour model of hoarding be incorporated into occupational
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therapy interventions alongside individual or group psychological interventions?
(iii) how can occupational therapy programs best support those living with others,
such as family members and children, to perform occupations in the shared home
space in a way that prevents the destruction of family relationships?
(iv) Occupation-focused recovery interventions
Participants in this research claim to want to change the way they live. For people
with a mental illness the sense of self is often lost and identity is assumed around
the mental illness, or in this research, hoarding. An important part of recovery
would be reorientating the sense of self apart from the hoarding and
understanding that the hoarding is only one element of the whole person. It is
through this process that a more adaptive and positive self-image is created.
Recovery goes beyond self-care and functioning. It is also the development of a
more meaningful existence and sense of purpose (Australian Health Ministers’
Advisory Council, 2013; Glover, 2005). Future research could examine questions
such as: does utilising a recovery treatment plan enhance the empowering of self-
determination and self-identification for people with hoarding behaviours? How
can recovery-oriented programs be best designed to support people at different
times in their journey and struggle with hoarding behaviours?
5.5 Limitations of this study
This study has explored the lived experience of how people with hoarding
behaviours manage everyday occupations in a cluttered environment. While
making a contribution to knowledge, there are several limitations of this study.
As a novice researcher who works full time in a mental health service as a senior
occupational therapist, I needed to be mindful of conducting a research interview
rather than a clinical interview. I sought supervision with my panel to ensure I
was using research interview techniques and adjusted any behaviour that may
have been considered a clinical style of interview. Furthermore, I did not interview
anyone I was actively working with for ethical reasons.
119
The small sample size of the study is a further limitation, along with the fact that all
participants were recruited in a specific area of Greater Western Sydney, Australia
and will not be representative of all people with hoarding behaviours. This
masters-level study aimed to gain an in-depth understanding of lived experience,
and therefore due to the scope and timeframe of the study, the sample size needed
to be small. However, the small sample size was in keeping with Smith’s (2009)
suggested sample size of six participants for an IPA masters level study. As noted
earlier, there is room for building a greater body of knowledge and therefore this
would warrant the investigation of the lived experience of participation in daily
occupations in other areas of Australia and indeed the rest of the world, with a
larger number of participants.
The recruitment of participants was a challenge. The first round of recruitment
produced no potential participants. The study design was revised and a new
submission to ethics was lodged to broaden the catchment area to non-
government agencies and public housing providers. Eventually, six participants
were located who shared their views. However, none were formally interviewed
or screened for a hoarding disorder diagnosis. Instead, participants were recruited
based on living in a cluttered environment which revealed they indeed engaged in
‘hoarding behaviours’, the term adopted throughout this thesis rather than
‘hoarding diagnosis’.
This study aimed to investigate ongoing participation despite living in a cluttered
environment. Participants in this study lived in homes which could be seen as
moderately cluttered and not as severe as some environments, such as those that
have wall-to-wall, floor-to-ceiling clutter with small pathways through the clutter
to move around the home. Participants in this present study could still move
around their homes, albeit with some difficulty. Further investigations of
managing daily occupations in a severely cluttered environment may discover very
different findings. Therefore, the findings should be seen as relevant to the
contexts in which people were living and a rich description, along with
photographs, reveal clearly what these environments were like.
120
Any qualitative study can be seen as being limited by potential bias or lack of
systematic procedures during analysis of data. Therefore, to reduce
methodological limitations in the analysis of data, Smith’s (2009) model of IPA
using the six-step process for doing IPA and the core principles for evaluating the
trustworthiness of qualitative research (Yardley, 2000) have been applied to this
study.
5.6 Conclusion
To date there has been only one qualitative study (Kellet et al., 2010) with people
with hoarding behaviours and there has been no occupational focused research on
how people manage daily tasks in a cluttered environment. The aim of this study
was to gain an in-depth understanding of the experience of participating in daily
occupations whilst living in a cluttered environment. Interpretative
phenomenological analysis has allowed for the use of a small sample and the in-
depth exploration of participants’ experiences thus making an original
contribution to knowledge and research on hoarding.
Six participants shared their stories. The results place hoarding as an occupation
and reveal that collecting is part of their identity and was often commenced in
response to trauma. People who have hoarding behaviours and live in cluttered
environments struggle with everyday life and relationships. However, through the
daily struggle they have shown strength, and with the thought put into developing
complex routines, they can participate in daily occupations. They also engage in
socially appropriate interactions that are part of their complex solutions for
everyday living. Hoarding behaviours are more than just obsessions and urges.
They are more than just impairments in body structures and functions.
As Dickie (2014) states, “To be human is to be occupational” (p. 3). Hoarding is an
occupation. If we can better understand how hoarding behaviours are embedded
in an occupational identity, then we can begin to create interventions together
with clients that build on a meaningful life with purpose, enabling participation in
occupation across many domains.
121
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APPENDICES
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Appendix 1: Research information sheet for clinicians
Research Information Sheet
Most people working in the Macarthur Wingecarribee Mental Health Service know
me. For those of you I have not met my name is Vicky Millanta. I am a senior
occupational therapist and coordinator of the rehabilitation and recovery service
in Bowral. I am currently completing my Masters of Science Research degree.
This email is introducing my study and requesting your assistance in the
recruitment of participants.
The title of my research is: Using the Model of Human Occupation to explain the
effects of Hoarding Behaviour on Activities of Daily Living in a cluttered
environment.
Research on hoarding is traditionally from a neurophysiological view point
focusing on body structures and functions, as is the best available treatment.
There is very little research that takes a holistic view of the person and
environmental context, taking into consideration the ability to complete activities
and participate in the roles and routines meaningful to the person.
The aim of this study is to develop an occupation focused understanding of the
lived experience of the person with hoarding behaviours, focused on the effects
of hoarding behaviours on activities of daily living in a cluttered environment. This
understanding will be framed using the principles of the Model of Human
Occupation.
The Model of Human Occupation is a conceptual model used by many
occupational therapists around the world to guide practice. The Model of Human
Occupation (MOHO) provides occupational therapists with a theory aimed at
explaining: why individuals are motivated to do what they do (volition), the habits
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and roles that organise their daily routines (habituation), and a person’s ability to
perform daily activities (performance capacity) (Kielhofner, 2008).
I have attached a copy of the advertisement for my study. If you have any
consumers you work with who you think may be eligible to participate in this study
please show them my advertisement for recruitment. If they are interested please
refer them to me using the standard Rehab referral form with Hoarding Study in
the outcomes. I will then contact the person and explain the context of my study
and offer them an appointment where I will go thorough in detail what participation
in this study will entail.
Please contact me on 0412 386 377 if you would like to discuss you referral first.
Your assistance in recruitment for this study is greatly appreciated.
Thank you
Vicky
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Appendix 2: Introduction letter for support from external agencies to recruit
Dear …………………………
My name is Vicky Millanta. I am a senior occupational therapist and coordinator
of the rehabilitation and recovery service in Bowral. I am currently completing my
Masters Honours Science Research degree.
This email is introducing my study and requesting your assistance in the
recruitment of participants.
The title of my research is: Navigating a cluttered environment: Using the Model
of Human Occupation to explore Hoarding Behaviour and Activities of Daily
Living.
Research on hoarding traditionally looks at how cognitive impairments of the
brain cause a person to hoard and why they have trouble with discarding and
organising their possessions. Treatment available is focused on changing the
thoughts of the person but does not work if the person is not ready to engage in
therapy. There is very little research that takes a holistic view of the person and
environmental context, taking into consideration the ability to complete activities
and participate in the roles and routines meaningful to the person.
The aim of this study is to develop an understanding of the lived experience of
the person with hoarding behaviours, focused on how people with hoarding
behaviours manage activities of daily living in a cluttered environment. This
understanding will be framed using the principles of the Model of Human
Occupation.
The Model of Human Occupation is a conceptual model used by many
occupational therapists around the world to guide practice. The Model of Human
Occupation (MOHO) provides occupational therapists with a theory aimed at
explaining: why individuals are motivated to do what they do (volition), the habits
and roles that organise their daily routines (habituation), and a person’s ability to
perform daily activities (performance capacity) (Kielhofner, 2008).
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This project has ethics approval through SWSLHD and UWS. However, I am
required to have a letter of support from the CEO giving your approval for
recruitment of participants from your organisation.
I would like to take the opportunity to meet with you and discuss this project
further at your convenience.
Your assistance in recruitment for this study is greatly appreciated.
Thank you
Vicky
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Appendix 3: Advertisement for participants
Do you have so much stuff in your home you can’t
move?
Do you struggle with the amount of stuff in your home and is it difficult for you to use the rooms in your home for what they are intended?
Do you have difficulties discarding (or recycling, selling, giving away) things away other people would get rid of?
Do you have a problem with collecting too much stuff?
Does all the stuff in your home make it difficult for you to do what you need to do every day e.g. daily routines, job/school, social or family activities, and financial difficulties?
Do you ever feel distressed by your cluttered environment?
If you answered yes to any of the above questions you may have a problem with
hoarding and are invited to participate in a research project investigating the lived
experience of hoarding behaviours and doing activities of daily living in a cluttered
environment
For more information regarding this research project please contact
Vicky Millanta Masters (Honours) Candidate University of Western Sydney
(Phone number to be provided prior to commencement of project) Or leave your details with reception and I will contact you
Hoarding problems related to a diagnosis of dementia are excluded from this research
project.
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Appendix 4: Letters of support for recruitment
To whom it may concern,
Re: Letter of support – Vicky Millanta
Argyle Community Housing has received a request by Mrs Vicky Millanta for
assistance with recruitment of participants for her Masters Honours Science
degree - Navigating a Cluttered Environment: Using the Model of Human
Occupation to explore Hoarding Behaviour and Activities of Daily Living.
I understand this research aims to develop an understanding of the lived
experience of how people who live with hoarding behaviours manage their daily
activities.
As Hoarding and squalor is an issue that is often encountered in social housing,
Argyle Community Housing will be happy to support and assist Vicky with this
request however it will be the choice of any individuals referred for the study if
they decide to take part.
I would be happy to discuss this decision further if required, please contact me on
(02) 4861 2753
Yours sincerely,
Megan Ward
General Manager
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12 February 2014
RE: Letter of Support-Vicky Millanta
Macarthur Disability Services (MDS) were recently approached by Mrs. Vicky Millanta for assistance in relation
to her Masters Honours Science Research degree-Navigating a Cluttered Environment: Using the Model of
Human Occupation to explore Hoarding Behaviour and Activities of Daily Living.
I understand that the broad aim of Vicky's study is to develop an understanding of the lived experience of
people with hoarding behaviours and how daily activities are managed in a cluttered environment.
While it will ultimately be the choice of individual service participants to take part in the study, MDS would be
pleased to be involved in this project as we are committed to increasing knowledge and awareness around
these issues.
Should you require any further clarification, please contact me on (02) 4621 8400.
ours incerely,
Scobie
Manager
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Appendix 5: Participant consent form
CONSENT FORM
Using the Model of Human Occupation to understand navigating a cluttered environment.
1. I, .................................................................................................................
of.................................................................................................................
agree to participate in the study described in the participant information statement attached to this form.
2. I acknowledge that I have read the participant information statement, which explains why I have been selected, the aims of the study and the nature and the possible risks of the investigation, and the statement has been explained to me to my satisfaction.
3. Before signing this consent form, I have been given the opportunity of asking any questions relating to any possible physical and mental harm I might suffer as a result of my participation and I have received satisfactory answers.
4. I understand that I can withdraw from the study at any time without prejudice to my relationship with (name of organisation).
5. I agree that research data gathered from the results of the study may be published, provided that I cannot be identified.
6. I understand that if I have any questions relating to my participation in this research, I may contact Mrs Vicky Millanta on 0413 273 383 who will be happy to answer them.
7. I acknowledge receipt of a copy of this Consent Form and the Participant Information Statement.
Signature of participant Please PRINT name Date
______________________ _______________________ __________________
Signature of witness Please PRINT name Date
_________________________ _______________________ _______________
Signature of investigator Please PRINT name Date
_____________________ _______________________ __________________
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Appendix 6: Participant information sheet
Participant Information Sheet
Title: Using the Model of Human Occupation to understand navigating a
cluttered environment.
Principal Investigator: Mrs Vicky Millanta
Introduction
You are invited to take part in a research project: Using the Model of Human Occupation to understand navigating a cluttered environment.
This is because you have either been identified by your care coordinator, support worker or you have self-identified as a person living in a cluttered environment. The research project aims to develop an understanding of the lived experience of how people function and manage to do the things they need to do every day in a cluttered environment.
Please read this information carefully. Ask questions about anything that you don’t understand or want to know more about. Before deciding whether or not to take part, you might want to talk about it with a relative, friend or your local doctor.
Participation in this research is voluntary. If you don’t wish to take part, you don’t have to. You will receive the best possible care whether or not you take part. If you decide you want to take part in the research project, you will be asked to sign the consent section. By signing it you are telling us that you:
• Understand what you have read
• Consent to take part in the research project
• Consent to the tests and research that are described
• Consent to the use of your personal and health information as described.
Participation in this project is for research purposed only. This research project does not include treatment to help with your cluttered environment. Should you wish to receive treatment please discuss this option with the researcher; Mrs Vicky Millanta.
You will be given a copy of this Participant Information and Consent Form to keep.
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What is the purpose of this research?
No research has been done before now that looks at how people living in a cluttered environment manage activities of daily living. Research to date identifies the deficits or things people who live in a cluttered environment can’t do. The purpose of this research is to understand from your point of view, your experiences of how you manage to do things in your everyday life despite living in a cluttered environment.
he results of this research will be used by the researcher Mrs Vicky Millanta to obtain a Master’s of Science degree.
What does participation in this research involve?
If you agree to participate in this research, you will be asked to sign the Participant Consent Form, meaning that you understand the information about the research and give your voluntary consent to participate.
If you agree to participate in the research, you will be asked to:
Participate in an individual interview with the researcher to tell your story of how you manage to do what you do in a cluttered environment on a daily basis. This interview should be completed in one or two sessions; however it may be completed in more if needed.
You will be asked to complete a daily activity schedule that reflects the tasks and activities you do on an average day.
You will be asked to participate in an interview style Occupational therapy assessment called the Occupational Circumstances Interview and Rating Scale.
With your permission the researcher would also like to take non identifying photographs of the clutter in your home. If you agree with this request you will be given opportunity to look at the photographs before they are used in data display. You may withdraw consent to use the photographs at any time.
This research project has been designed to make sure the researcher interprets the results in a fair and appropriate way. You may be asked in subsequent meetings to review a summary of your interview. This is to ensure the researcher is correctly interpreting and reflecting your story as told by you.
Participation in this research will not cost you anything. You will not receive payment or any other incentive for participating in this research.
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Do I have to take part in this research project?
Participation in any research project is voluntary. If you do not wish to take part, you do not have to. If you decide to take part and later change your mind, you are free to withdraw from the project at any stage.
If you do decide to take part, you will be given this Participant Information and Consent Form to sign and you will be given a copy to keep.
What are the possible benefits of taking part?
We cannot guarantee or promise that you will receive any benefits from this research. The expected outcome of this study may benefit individuals and the wider community by providing an understanding of the lived experience of how a person manages day to day activities in a cluttered environment. It is also expected this research will assist in developing interventions which will help people living in a cluttered environment manage the clutter and improve overall quality of life.
What are the possible risks and disadvantages of taking part?
Questions related to activities of daily living and observation of the home environment may cause some form of distress and discomfort for the participant. The researcher is a trained clinical mental health professional who can monitor for signs of distress and access appropriate services and interventions for the level of distress if required.
If you experience any level of distress of discomfort at any time during the research, please inform the researcher conducting the interviews; Mrs Vicky Millanta.
What happens when the research project ends?
If you give me your permission by signing the consent document, I plan to publish the results in my thesis, a peer-reviewed journal as well a present the results a conferences or other professional forums. In any publication, information will be provided in such a way that you cannot be identified. Results of the research will be provided to you, if you wish.
Confidentiality / Privacy
Any identifiable information that is collected about you in connection with this research will remain confidential and will be disclosed only with you permission, or except a required by law. Only the researcher will have access to you details and results will be held securely at the University of Western Sydney.
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Complaints contact person
This study has been approved by the South Western Sydney Local Health District Human Research Ethics Committee. Any person with concerns or complaints about the conduct of this study should contact the Ethics and Research Governance Office, Locked Bag 7279, LIVERPOOL BC, NSW, 1871 on 02 8738 8304, fax 02 8738 8310, email [email protected], website: http://www.sswahs.nsw.gov.au/swslhd/ethics/default.html and quote HREC project number 13/078.
Further information and who to contact
When you have read through this information, researcher Mrs Vicky Millanta will discuss it with you and any queries you may have. If you would like to know more at any stage, please do not hesitate to contact her on 0413 273 383
Thank you for taking the time to consider this study.
If you wish to take part in it, please sign the attached consent form.
This information sheet is for you to keep.
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Appendix 7: Semi-structured interview guide
Narrative interview guide
Using the Model of Human Occupation to understand navigating a cluttered
environment.
o Introduction and explanation of the purpose of the interview.
o Explain to participants that the interview will be recorded and the data collected will be transcribed and used to describe the outcomes of the interview.
o Explain to participants the interview will remain confidential – unless a
risk is identified which will require follow up by the community mental
health emergency team.
These questions are prompts for the researcher and may be asked in any
order, if at all, depending on the nature and path of the interview.
Tell me about yourself. What do you like to do?
Tell me what it’s like to live in a cluttered environment? Do you like having
all your stuff around you?
What do you do for meals? Do you manage to make yourself something to
eat?
Where do you sleep?
How do you look after your self-care?
Do you work? What is your work space like?
Do you have many friends? Do you invite them around?
What do you like to do out and about in the community?
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Appendix 8: Ethics approval
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Appendix 9: University reciprocal ethics approval
Our Reference: 13/011960 | H10364
HUMAN RESEARCH ETHICS COMMITTEE 29 August 2013 Doctor Julia Bowman, School of Science and Health Mrs Vicky Millanta School of Science and Health Dear Julia and Vicky I wish to formally advise you that the Human Research Ethics Committee has reciprocally approved your research proposal H10364 “Using the Model of Human Occupation to explain the effects of hoarding behaviour on activities of daily living in a cluttered environment”, until 29 May 2018 with the provision of a copy of the progress reports provided to South Western Sydney Local Health District Human Research Ethics Committee (ref. HREC 13/LPOOL/125 13/078) and a final report on completion. Please quote the registration number and titled as indicated above in the subject line on all future correspondence related to this project; emails should be sent to [email protected] address. This protocol covers the following researchers: Julia Bowman, Karen Arblaster, Vicky Millanta. Yours sincerely Mrs Louise Fazekas Acting Executive Officer on behalf of Human Research Ethics Committee
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Appendix 10: Guidelines and policies that guide mental health practice and working with people with hoarding behaviours.
Living well: A strategic plan for mental health in NSW 2014 - 2024
National standards mental health 2010
National practice standards for mental health 2013
A national framework for recovery oriented mental health services: Guide for
practitioners and providers 2013
Trauma-Informed Care and Practice: Towards a cultural shift in policy reform
across mental health and human services in Australia 2013
Practice guidelines for the treatment of complex trauma and trauma informed care
and service delivery 2012
Beyond Overwhelmed: Identifying pathways to deliver more effective services for
people and their pets affected by hoarding and squalor across NSW.
Hoarding and squalor: a practical resource for service providers 2013 (Victoria)
Hoarding and severe domestic squalor: a guideline for Western Australia 2013
A foot in the door: stepping towards solutions to resolve incidents of severe
domestic squalor in South Australia. A Guideline 2013
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