University of Surrey Faculty of Health and Medical Science MSc Health and Social Care

A Phenomenological Study of The Experience of Hospice Volunteers

in a Palliative Care Setting in Japan

University of Surrey

Faculty of Health and Medical Science

MSc Health and Social CareAI KOBAYASHI

2012. 7. 9

Hospice volunteers make a difference to patients’ Quality of Life as well as their own QOLSeeing someone dying in a hospice is not frightening but a valuable experienceVolunteers need the support and

understanding of health care professionals

Volunteerism as a concept<European countries>

• History of church based volunteering• Autonomy of individuals

<Japan>• Mutual aid group in communities• A sense of obligation • Cultural borrowing from abroad

• Individuals’ autonomy and interests

Aim To explore the lived experience of

hospice volunteersResearch question What is it like to be a volunteer in a

hospice setting and what meaning does this have for individual hospice volunteers?

Purpose Develop health care professionals’

awareness of the experiences of hospice volunteers and team working

Studies of hospice volunteers

General reports of activities

effectsrole

concerns education motivation

Quantitative 3 2 0 2

Qualitative 0 0 2 1

No methodology 7 6 11 0

Hospice volunteers valued self-realisation and personal

growth as their motivation to volunteermay have specific motivation (personal

experience of a disease/the death of a loved)

Positive encounters with a hospice are related to personal growth

The significance of hospice volunteers still not recognised widely in Japan

There were concerns about recruitment, training and communication

Methodology <My perspective>Epistemological

constructivismInterpretivism

<Research aim>To explore ‘the

meaning’ of ‘the experience’ of hospice volunteers

Qualitative research

PhenomenologyHermeneutical phenomenology

Sampling11 people from 2 hospices in 2 hospitals• Non-probability• Purposive

<Inclusion Criteria>• Be registered • Age from 18 to 65 years old• Be involved in voluntary activities in the

hospice setting on a regular basis – at least 1/week, more than 6 months

Data collectionIn-depth, unstructured, one-to-

one interviews 　 (in a quiet room, up to an hour)

Field notesData analysis

Van Mannen’s (1990) approach ①Holistic approach ②Selective approach ③Detailed approach

Characteristics A hospice B hospice

Back ground Ecclesiastical PublicHistory of the

hospice 27 years 1 yearsNumber of beds 21 beds 20 beds

Average length of hospitalisation 18 days >30 days

When volunteers introduced 27 years ago 1 years agoNumber of volunteers

(Woman/Man)19 (19 / 0) 21 (21 / 0)

Age range of volunteers 41 -71 years old 49 – 68 years old

Process before starting volunteer

work in the hospice

Training in a supply room

Working in a general ward

Moving to the hospice after receiving an

interview

Directly applying as a hospice volunteer

Receiving interviews 3 days training

No. AgeLength working hospital

Length working hospice

Employedprevious volunteer

experiencesLiving

withPresence

of Religious

A1 47 3 (m) 14 housewife 〇 Family ×

A2 56 1.5 (y) 5.5 housewife × Family ×

A3 71 3 (y) 27 housewife × Family Christian

A4 59 1 (y) 4 Self employed 〇 Family ×

A5 52 3 (y) 3 housewife × Family ×

A6 41 7 (m) 1.3 Part-time 〇 Family Buddhist

B7 61 0 1 Retired / housewife 〇 Family ×

B8 61 0 1 Retired / housewife 〇 Family ×

B9 49 0 1 housewife × Family ×

B10 50 0 1 Full-time × Alone ×

B11 62 0 1 housewife 〇 Family ×

Before the journey-Having core attitudes-Having core motivation -Having a good environment for volunteering 　-Deciding on the choice of hospice

Being in the journey

-Making adaptations-Meeting challenges-Belonging to a team-Feeling good -Making a difference to personal life

Continuing the journey

-Feeling ‘privilege’ of being the volunteer-Enhancing palliative care as a volunteer-Intention to continue the volunteering-Having meaning of being a hospice volunteer

Before the journeyHaving Core

Attitudes

Positive attitude to volunteering

Trying casually

Having belief

“I didn’t expect to continue long (B11)”

Having Core Motivation

Having a good environment for

volunteeringDeciding on choice of

hospice

Wanting to be useful

Having personal interests

Having an interest in hospices

Having personal life event

“I had always wanted to give what I could in return (A4)”

“I want to read to patients(B11)”

TimingSupport

Good conditions Getting know the

particular place“convenience to commune”

Becoming a hospice

volunteer

Being placed at the hospice

Being pleased to become a hospice

volunteer

Feeling anxiety and

stress

Retaining motivation

Feeling anxious of the first experiences

Feeling stress to the nature and contents

of works

Feeling stress about acceptance of

volunteers

Being supported

Having a sense of obligation

The beginning of the journey

“Probably some nurses felt as though we were invading their territory “(B9)“I often felt uncomfortable,

because many patients passed away” (B7)

“I felt the hospice was more rewarding than the ward…I was struck by the very warm welcome given from the nursing staff.” (A5)

Being in the journey Making

adaptations

To role as a volunteer

To work

Meeting Challenges

Belonging to a team

Challenges of personal-life

Challenges of the interaction with

patients

By supporting systems

Challenges of relationships

By sharing sufficient information

By good relationship with nurses

“when a patient mentioned about their disease, I feel frustrated that I can’t find any words to say to them” (A2)

Feeling good

By making a difference to patients’ QOL

Many things added up

By making a difference in the relationship with patients

Making a difference to personal life

Being useful to patients

Gaining sense of fulfillment

Obtaining emotional

reward

Learning from others

Personal growth‘Reset’ herself

Learning the way of living and dying

Making a difference in the social relationships

“I receive many things from patients…My heart gets nourished…I've grown as a person” (B9)

“I don't have to be thanked but I'm just happy to see their smiles, enjoying them”

Feeling ‘privilege’ of being a volunteer

Thankful to have the opportunity of being

a volunteer

Enhancing palliative care as

a volunteer

Enhancing human resource

Enhancing team workMotivation to improve

as a volunteer

Continuing the journey

Enhancing hospice volunteering in the community

“I was impressed even though she was suffering herself, she was considerate towards her son and others…Such moments make me think it's a privilege for me to work here” (A5)

“It would be great, if doctors and nurses could better understand about volunteering” (A3).

Intention to continue the volunteering

Planning to retire

Planning to continue

The meaning of being a hospice

volunteer

Personal growth

Purpose in life beyond themselves

Life work

Continuing the journey 2

“The meaning of being a volunteer is a bit like something I live for, worthwhile. It sort of adds something to my life” (A5)

“I want continue as long as I can” (A2, B7)

“I’m almost 72 years old, so it is hard physically” (A3)

Implications for practice Providing initial training Offering sufficient explanationsPresenting the the principle

roles and responsibilities of hospice volunteers

Encouraging communication in a team

Giving feedbackOffering a chance to reflect on

hospice volunteers’ work

Limitations of the study Limitation to generalise the results - sufficient background information

was givenThe effects of translation into English Japanese transcript was used for

the major part of data analysis - tried to deepen understanding the

context - checked by a Japanese translator

and a British colleague

Recommendations for further research

A national scoping exerciseSurveys of both volunteers and

health care professionals about their perception of hospice volunteers, including the role and boundary of their work

A case-control study focusing on the relationship between facilities for volunteers and the stress of volunteers

Using grounded theory approach

Thank you for listening!!Any questions?

Ethical considerationsApproved by the Faculty

Health and Medical Science Ethics Committee, University of Surrey

Autonomy of participantsProvided sufficient

informationReceived informed consent

formsAnonymised by using a codeThe data will be stored for 10

years