Towards a shared understanding: Exploring encounters in ...

LICENTIATE T H E S I S

Department of Health ScienceDivision of Nursing Towards a shared understanding:

Exploring encounters in hospital care from the perspectives of nurses and patients

ISSN 1402-1757ISBN 978-91-7583-912-7 (print)ISBN 978-91-7583-913-4 (pdf)

Luleå University of Technology 2017

Åsa N

ilsson Towards a shared understanding: E

xploring encounters in hospital care from the perspectives of nurses and patients

Åsa Nilsson

Nursing

Towards a shared understanding:Exploring encounters in hospital care from the

perspectives of nurses and patients

Åsa Nilsson

Division of Nursing

Department of Health Science

Luleå University of Technology

Sweden

Luleå 2017

Printed by Luleå University of Technology, Graphic Production 2017

ISSN 1402-1757ISBN 978-91-7583-912-7 (print)ISBN 978-91-7583-913-4 (pdf)

Luleå 2017

www.ltu.se

Cover photo: Åsa Nilsson

To my family

CONTENTS

ABSTRACT 1

ORIGINAL PAPERS 3

INTRODUCTION 5

BACKGROUND 5

Hospital care 5

Being a patient in hospital care 6

Encounters 7

Shortcomings in hospital-care encounters 9

Patient participation in hospital care 10

The nurse–patient relationship 12

RATIONALE 13

THE AIM OF THE LICENTIATE THESIS 14

METHODS 15

Context 15

Participants and procedure 15

Study I 15

Study II 15

Data collection 16

Study I 16

Study II 16

Data analysis 17

Study I 17

Study II 17

Ethical considerations 18

FINDINGS 19

Paper I 19

Nurses’ views of shortcomings in patient care encounters in one hospital in Sweden 19

Paper II 20

Meanings of participation in hospital care narrated by patients 20

DISCUSSION 21

METHODOLOGICAL CONSIDERATIONS 26

CONCLUDING REMARKS 28

SUMMARY IN SWEDISH - SVENSK SAMMANFATTNING 29

ACKNOWLEDGEMENTS 32

REFERENCES 35

Paper I

Paper II

DISSERTATIONS FROM THE DEPARTMENT OF HEALTH SCIENCE, LULEÅ UNIVERSITY OF TECHNOLOGY, SWEDEN

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Towards a shared understanding: Exploring encounters in hospital care from the perspectives

of nurses and patients

Åsa Nilsson, Division of Nursing, Department of Health Science, Luleå University of Technology, Luleå, Sweden

ABSTRACTThe overall aim of this licentiate thesis was to describe encounters in hospital care from the perspectives of nurses and patients. It focuses specifically on nurses’ views of shortcomings in patient-care encounters in one hospital (I) and the meanings of participation in hospital care as narrated by patients (II). Three focus group discussions with 15 registered nurses were conducted, and data were analyzed using thematic content analysis (I). Narrative interviews were conducted with 15 patients in hospital care, and the interviews were analyzed with a phenomenological hermeneutic interpretation (II). This licentiate thesis shows that a shared understanding is considered as central for both the nurses and the patients in the hospital-care encounter. The nurses demonstrate the need to understand, to create space, and also to be available for vulnerable patients. The patients describe the need to be understood and to understand their own situations. This thesis suggests that positive encounters in hospital care imply that nurses need to take responsibility for creating a mutual dialogue where the patient experiences himself or herself as a co-creator in a trustful context. When nurses acknowledge and confirm the vulnerability of their patients, it becomes possible to support them to participate in an active manner. A well-functioning team, as well as a coherent environment, is, in this thesis, understood as a precondition for positive hospital-care encounters.

Keywords: encounter, participation, nurses, nursing, patients, hospital care, shared understanding, shortcomings in hospital care, qualitative research, qualitative interviews, thematic content analysis, phenomenological-hermeneutic interpretation

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ORIGINAL PAPERS

This licentiate thesis is based on the following papers, which will be referred to in the text by the numeral listing:

I. Nilsson, Å., Skär, L., & Söderberg, S. (2015). Nurses’ views of shortcomings in patient care encounters in one hospital in Sweden. Journal of Clinical Nursing. 24, 2807-2814, doi:10.1111/jocn.12886

II. Nilsson, Å., Söderberg, S., Lindberg, B., & Olsson, M. Meanings of participation in hospital care as narrated by patients Manuscript.

Paper I has been reprinted with the permission of the publisher concerned.

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INTRODUCTION

This thesis focuses on the nurse–patient encounter in hospital care from the perspectives of nurses and patients. The nurse-patient encounter lies within the core of nursing, and as phenomenon the nurse-patient encounter has been well studied in contemporary nursing research. In studies that include nurse–patient encounters, the patient’s sense of being a participating actor is often highlighted as a matter of importance (cf. Eldh, Ekman, & Ehnfors, 2006, 2008; Larsson, Sahlsten, Sjöström, Lindencrona, & Plos, 2007).

Ekman (2014) clearly pointed out how being a participating actor in hospital care requires both involvement and partnership in an environment where each patient can feel comfortable. However, the hospital setting is often described as unfamiliar to the ill person. This unfamiliarity can be seen as related to hospital structures with which the ill person is not familiar. Additionally, the ill body and the well-known medicalization of the body imply alienness or an unhomelike experience for the person who, because of his or her illness, is cared for in a hospital setting (cf. Dahlberg, 2014; Svenaeus, 2001).

From this, it can be understood that the context of the hospital setting, as well as the patient’s experience of being ill, become challenges for professionals in supporting the patient’s capabilities of being a participating actor who experiences a positive hospital-care encounter (Frank, Asp, & Dahlborg, 2009). This thesis sets out to describe what is needed of the nurse in order to form a care structure that support patients’ feelings of participation and positive hospital-care encounters. By studying shortcomings and participation from the different views of nurses and patients, an understanding about what is needed to acknowledge the vulnerability of the patient is gained. Knowledge is also gained about what it takes to formulate a trustful context or setting that supports patients’ well-being during their hospital stays as a result of their experiencing positive encounters.

BACKGROUND

Hospital careHistorically, hospital care as institutional care has been described as characterized predominantly by a paternalistic medical perspective, where the professional was the one with knowledge and the patient’s body as well as the disease, condition, or injury constituted the central focus. As time has passed, health care has in general come to recognize disease as an elusive matter. The main focus today is directed not solely toward signs, symptoms, pathogeneses, and prognoses. Instead, the contemporary view is that both subjective illness and objective disease are concepts of similar importance. Today, the view of disease assumes that the patient and his or her suffering from the disease are also central and should be taken into account

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in the care setting (Sundström, 2001). A hospital stay often requires patients to use a hospital’s common public space for the most private and personal functions and intimate acts of daily living, which can, in turn, generate more suffering for the already-vulnerable patient. Eriksson (2006) clearly described how suffering could appear from any of the physical, social, or emotional processes involved with being a patient. This indicates that it can be understood that being in a hospital with its institutional environment is a potential threat to the integrity of a person. In relation, Toombs (2001) has described how the loss of integrity is strongly related to suffering. In the mid-1900s, the individual’s autonomy as a concept and as an outlook on human vision became central in the healthcare profession and resulted in a strengthened patient position.

In Sweden and other Western countries, the patient’s position has been strengthened through laws and provisions (SFS 1982:763; 2017: 30; SFS 2014:821), and autonomy, integrity, and participation have become central concepts and areas of attention. As a consequence, the change in viewing patients and their expectations and the attention on the autonomous person who participates in his or her own care can be said to also demand that care is provided in a certain manner that promotes patient autonomy. It can also be said to require that the person who is in need of care is, in fact, able to engage actively in his or her care. As a result, this shift in the view of the patient from a passive recipient of care to an active partner in his or her care assumes that the patient appreciates this shift of responsibility. It also requires that hospital settings adapt in order to meet all of their patients as unique individuals and to consider their living conditions to provide equitable care. According to Dahlborg Lyckhage, Lau, and Tengelin (2015), standards in health care as well as in society can be seen as barriers for equitable care since standards tend to define what is desirable, and often, power, social norms, and identity play an important part in influencing a person’s living conditions. As institutions of society, health care settings should be seen in their historical and their contemporary contexts. It can be said that history and contemporary views on a societal level always determine values, statements, and norms, and these tend to influence how care is organized and carried out. Dahlborg Lyckhage and Pilhammar Andersson (2009) argue that the medical discourse is still the most important and powerful element in our contemporary health care. This dominance can be understood as resulting in the physical environment of a hospital setting, as well as how care is provided, not always and easily corresponding to the ideal concept of the autonomous patient.

Being a patient in hospital careBeing treated in a hospital setting and assuming the role of patient often implies that the ill body becomes the central focus of attention (cf. Sveneaus, 2001). It is well known that the ill body hinders the patient’s capability to engage in the activities of daily living in a manner that feels satisfying to him or her (Appleton et

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al., 2015; Corbin, 2003; Fry, McLachlan, Purdy, Sanders, Kadam, & Chew-Graham, 2016). Toombs (1993, 2001) has, from a phenomenological account, described how we often do not become aware of our body until it no longer functions in a predictable manner or until it hinders us from our familiar everyday routines. Furthermore, Merleau-Ponty (1995/1999) described the “lived body” and how we receive all our perceptions through the body. From this, it is reasonable to expect that the human body, as simultaneously an object and a subject, must be taken into account during the course of an illness and a hospital stay. For the patient being treated in a hospital setting, the often-unfamiliar experience of the ill body and being in an unfamiliar environment generate feelings of vulnerability and uncertainty. Being a patient in a hospital context is also said to constitute a threat to the identity and autonomy of the person (Lindberg, Fagerström, Sivberg, & Willman, 2014). Related to identity and autonomy, Eriksson and Svedlund (2007) describe how patients in hospital settings struggle for confirmation. This indicates that there seems to be a gap in the healthcare goal of protecting the autonomy of the patient, as patients do report a lack of confirmation. Dahlberg and Segesten (2010) strongly advocated the importance of life-world-led health care. Immersed in life-world-led health care, the biological health and existential experience of being a person situated in a particular context is of equal importance for the perception of health and well-being.

Furthermore, Dahlberg and Segesten (2010), according to the life-world-led healthcare approach, gave patients’ subjective experiences the same level of importance and status as professionals’ objective assessments in the context of hospital care. According to Toombs (2001), who, similar to Dahlberg and Segesten (2010), highlighted patients’ subjective experiences in hospital settings, clinical interventions should be directed toward the subjective needs of the patient as well as toward the objective needs and the ill body. In order to accomplish this, it can be seen as important to understand the person’s lived experiences of disability in clinical contexts. Several studies (Attree, 2001; Zisberg, Zlotnick, Gur-Yaish, Admi, Sinoff, & Shadmi, 2015) that have investigated patient satisfaction with hospital care have shown that nursing care is a crucial part of patients’ overall appraisals of their experiences during hospital care. Often, this nursing care is connected with patients’ experiences of being respected as a person. Regardless of a patient’s satisfaction with hospital care, it is important to remember that the patient’s vulnerability and existential thoughts must always be addressed (Sörlie, Torjuul, Ross, & Kihlgren, 2006).

EncountersThe encounter is a concept often used in nursing research and is frequently compared to the meeting as a concept. In the context of nursing care, the encounter is a phenomenon related to actively caring for the patient, and therefore, it has the potential to alleviate suffering or promote well-being and health among

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patients (Nåden & Eriksson, 2002). The essence of caring begins with human beings, and their health and suffering are integrated. The patient as a human being is the first priority, and the patient’s world determines the manner of caring (Arman, Ranheim, Rydenlund, Rytterström, & Rehnsfeldt, 2015). This indicates that the professional has to create an encounter with awareness and confirmation of the patient’s individual situation, which Arman et al. (2015) call “caregiving acts.” In caregiving acts, the caring becomes visible in its absence. From this, they argue that encounters in health care mirror essential phenomena in the art of caring, where relationships and dialogue are essential. How people find themselves being met, therefore, strongly mirrors how the foundations of caring are carried out in practice.

In contemporary nursing research, there is an obvious focus on the ethical and existential dimensions of the encounter. Martinsen’s nursing theory, where Løgstrup’s ethics about responsibility toward the other person are considered as a basis for the caregiving encounter, is valid when it comes to hospital-care encounters. Her theory involves a call from the vulnerable and dependent person and requires the caregiver’s sensitivity. A caregiver has to be “touched” and “see with the heart’s eye” for understanding and to take care in the action (Martinsen, 2000, 2006). Moreover, Halldorsdottir’s theory about caring and uncaring encounters in nursing and the wall–bridge theory of human encounters are essential to understand when it comes to hospital-care encounters (Halldorsdottir, 1996). The metaphor of a bridge includes openness in communication and connectedness experienced by the patient. The wall metaphor involves negative communication or a no communication, detachment, and the lack of a caring connection experienced by the patient. Furthermore, the inner and the outer context affect the recipient of care. The inner context perceives needs, expectations, previous experiences, and the sense of self, which, in the context of the patient, can be summarized as a sense of vulnerability and a need for professional caring. The outer context comprises the environments that influence both the patient and the provider of care (Halldorsdottir, 1996). Both these nursing theories highlight the importance of the nurse’s ability to create open, trusting encounters in nursing care, which require an awareness of ethics and specific skills of nurses, including but not limited to courage, imminence, and availability (Nåden & Eriksson, 2002).

The existential encounter, where the patient is given the opportunity to create expressions for his or her suffering in association with the nurse, is studied and described as a meeting at a spiritual level (Rehnsfeldt, 1999). This existential encounter gives the patient opportunities to form words and expressions, while the absence of such encounters in health care generates wordlessness and emptiness. According to this, the nurse becomes a co-creator of the patient’s experience of the ontological abandonment being replaced by interdependence. An encounter where the patient is respected as a unique person can help to alleviate suffering in contrast to a healthcare encounter where the patient is objectified, which can contribute to

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suffering caused by care (Eriksson, 2006). A caring encounter may imply a situation where the nurse and the patient share a horizon of understanding. An existential encounter implies respect and requires a natural and a professional encounter based on the nurse’s attitude and gives both the patient and the nurse a changed understanding of life (Rehnsfeldt, 1999).

In every healthcare situation that involves people, there are opportunities for encounters, but being in the same place is no guarantee for a meaningful encounter. A meaningful encounter includes presence, an interpersonal process characterized by sensitivity, holism, intimacy, vulnerability, and adaptation to unique circumstances (Finfgeld-Connett, 2006, 2008). The meaningful encounter can be seen as a complex phenomenon with various attributes and dimensions (Gustafsson, Gustafsson, & Snellman, 2013a; Gustafsson, Snellman, & Gustafsson, 2013b). The most important characteristics of healthcare encounters are mutuality and reciprocity aiming to create symmetry between the healthcare professionals and the patients (Holopainen, 2016). Martinsen (2006) deems that the practice of care is about learning to handle power. The responsibility for a reciprocal encounter is something the healthcare professional is accountable and responsible for, and that requires openness, availability, and closeness (Holopainen, 2016; Nåden & Eriksson, 2002). In addition, Croona (2003) views the nurse as responsible for creating confident healthcare encounters, that is, something more than an everyday encounter of people in an acceptable and pleasant way. Healthcare encounters demand a different form of understanding than normal understanding; they are about meeting the expectations and needs of patients. Studies show that communication skills, both verbal and nonverbal, are essential in the same way as the ability to create room for dialogue (Gustafsson et al., 2013a; Snellman, Gustafsson, & Gustafsson, 2012). The meaningful encounter is characterized by fellowship, mutual responsibility, a feeling of safety, and warmth. In a prolonged sense, the encounter provides life-changing moments and acts as healing forces. In nursing research today, the outlook on the encounter can be seen as quite normative and describes how care and nursing should be provided. It can be concluded that the encounter does not occur without effort. Instead, it is obvious that it demands availability from the professionals.

Shortcomings in hospital-care encounters In contrast to meaningful encounters, patients describe shortcomings in hospital-care encounters. When patients feel that they are not being listened to and respected during their hospital stay, they refer to these situations as shortcomings in the hospital-care encounter (Skär & Söderberg, 2011; Söderberg, Olsson, & Skär, 2012), and unfortunately, these shortcomings are common in healthcare encounters (Skär & Söderberg, 2011; Poteat, German, & Kerrigan, 2013; Wessel, Helgesson, Olsson, Juth, Alexanderson, & Lynöe, 2013). Furthermore, being met with an attitude of nonchalance is described by patients as feeling wronged (Wessel et al.,

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2013). Previous research has found that shortcomings affect patients’ experiences of dignity, health, and well-being (Skär & Söderberg, 2011; Söderberg et al., 2012). Matiti and Trorey (2008) showed that patients in hospital care, irrespective of their situation and degree of health, present privacy, confidentiality, communication, choice, involvement, respect, and decency as key themes that contribute to the preservation of their dignity. When these components do not exist in hospital-care encounters, this affects the patient’s experiences of dignity, which Eriksson (2006) showed as one reason for suffering related to health care. Meeting nonchalance, lack of dialogue, and lack of influence in hospital-care encounters contributes to non-empowerment, in contrast to an encounter that creates trust and opportunities for learning (Nygård, Malm, Wikby, & Ahlström, 2011). The most common reasons for a negative encounter in hospital care, as experienced by patients and relatives, are insufficient information or not being given the option to participate; insufficient respect; and insufficient empathy (Jangland, Gunningberg, & Carlsson, 2009). Little research has focused on professionals’ views of shortcomings in hospital-care encounter but one study (Snellman et al., 2012) presented both similarities and differences in patients’ and caregivers’ descriptions of attributes significant in meaningful encounters.

Patient participation in hospital care In a good-quality caring process, the phenomenon of participation is seen as valuable and important by patients in hospital care (Fröjd, Swenne, Rubertsson, Gunningberg, & Wadensten, 2011; Widäng & Fridlund, 2003). During the mid-1900s, when individual autonomy came into focus, the patient’s position became strengthened, and patient participation became vital, but then also singularly connected with the decision-making process. In the early 2000s, as the concept of person-centered care (PCC) emerged, participation also become associated with knowledge about diseases, experiences, and treatments (Ekman, 2014).The phenomenon of participation means that patients focus on interaction with healthcare professionals rather than merely participating in decision making. Patients talk about respect for them as individuals and their individual knowledge about their body and situation (Eldh et al., 2006; Eldh, Ekman, & Ehnfors, 2010). Patients’ descriptions of participation also focus on having knowledge rather than being informed. and they talk about sharing knowledge and respect (Eldh et al., 2010) in contrast to Höglund, Winblad, Arnetz, and Arnetz (2010), who state that both patients and professional describe participation primarily as information. Frank et al. (2009) present patient participation as being seen as an individual being acknowledged and having a clear space. Another description is being a companion in the caregiving context together with nurses and family members (Soleimani, Rafi, & Seyedfatemi, 2010).

Jewell (1996) illustrated that patient participation in nursing care has a philosophical approach and a practical component. The philosophical approach includes

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individual and holistic care, realistic plans based on negotiation, and encouraging the patient to be active during his or her hospital stay. The practical component involves the process whereby the nurse recognizes what the patient wants, takes part in his or her physical care, and provides information to the patient during the hospital stay. Tutton (2005) defined it as a dynamic process that occurs in the context of caregiving; it changes over time and is integral to the work of nurses and caregivers. Other studies (Obeid, 2000; Wellard, Lillibridge, Beanland, & Lewis, 2003) have also demonstrated that participation is a dynamic process moving beyond just having a voice toward a general involvement in everyday aspects of care during his or her hospital stay. Patient participation includes a person-centered philosophy, an equal relationship, and the opportunity to share concerns with a supportive facilitator. This kind of patient participation requires that nurses shift from using principle ethics to relational ethics (Aasen, Kvangarsnes, & Heggen, 2012).

Today, no single definition of patient participation is available; instead, terms such as patient involvement, patient collaboration, patient empowerment, partnership, and patient-centered care are often used in the healthcare literature (Longtin, Sax, Leape, Sheridan, Donaldson, & Pittet, 2010). Moreover, PCC is associated with participation (SBU, 2017). According to the International Classification of Functioning Disability and Health (ICF), participation is a person’s involvement in his or her life situation (WHO, 2016). Sahlsten, Larsson, Sjöström, and Plos (2008) stated four attributes of the concept of patient participation within the context of nursing practice from the existing literature: an established relationship that is predominant, a surrendering of some power or control by the nurse, shared information and knowledge, and active mutual engagement in intellectual and/or physical activities. Their study stated that patient participation exists only when all four attributes are present.

Unfortunately, these factors do not always exist, which negatively affects patients’ experiences of participation in their hospital care. Patients describe four areas as barriers to patient participation: facing their own inability, meeting a lack of empathy, meeting a paternalistic attitude, and a sense of structural barriers (Larsson , Sahlsten, Sjöström, Segesten, & Plos, 2011). Other studies have also shown how non-participation encompasses facing organization-centered rather than patient-centered health care and generates feelings of insecurity in healthcare interactions (Eldh et al., 2006, 2008). Such organization-centered care results in consequences that include patients experiencing a lack of information, not being provided with appropriate information, lacking recognition, not being listened to, and/or lacking recognition as an individual with specific needs and concerns. As such, Dahlberg and Segesten (2010) noted that participation in hospital care occurs only when information and support are able to meet the patient’s life-world. Studies have further indicated that nurses’ beliefs, attitudes, and behaviors affect patient participation, both positively and negatively (Florin, Ehrenberg & Ehnfors, 2006,

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2008; Frank et al., 2009). The nurse’s attitudes and level of commitment affect the level of the patient’s participation (Rehnsfeldt, 2005; Jewell, 1996), and the nurse is a key person for successful patient participation (Larsson et al., 2007). Tutton (2005) also illustrated how the nurse has the potential to facilitate and create effective patient participation through the ability to provide conditions in partnership. This means respecting the patient and getting to know the person, and being continually open to the possibility of variations and changes in patients’ responses, which results in trust and in partnership.

The nurse–patient relationship The encounter is the starting point in a nurse-patient relationship and is central and fundamental in the process of effective nursing care (Berg, Berntsson, & Danielsson, 2006; Halldorsdottir, 2008; Morse, 1991). At the same time, the establishment of a nurse–patient relationship in which patients are regarded as unique persons and individuals of body, soul, and spirit (Eriksson, 2002) for experiences of autonomy and dignity (Eriksson & Svedlund, 2007) is a challenge in the caring process. In good-quality care, autonomy and dignity are central and vital for patients to preserve and strengthen their identity (Edlund, 2002; Walch & Kowanko, 2002; Widäng & Fridlund, 2003). Every nurse–patient relationship represents a balance between dignity and vulnerability (Berg et al., 2006). A nurse–patient relationship in which the patient is met as a subject and where the focus is on his or her unique lived experience is considered as mutual and creates confidence. This kind of nurse–patient relationship generates a caring relationship (Berg et al., 2006; Berg & Danielsson, 2007) characterized by trust in professionals and a balance between the patient’s and the caregiver’s wishes (Widäng & Fridlund, 2003). When reciprocity between non-equal persons occurs, there is recognition of the asymmetric nurse–patient relationship, and this implies that the focus shifts to the vulnerability of the suffering person. This shift of focus and the acknowledgement of vulnerability are essential to compensate for the unequal relationship (Kristensson Uggla, 2011). In addition, Schuster (2006) showed that a foundation of care is a mutuality based on recognition and empathy balanced by the acknowledgment of the other as a unique individual. A caring relationship consists of openness, presence, and respect for each other as professionals and patients (Berg et al., 2006; Berg & Danielsson, 2007). The nurse–patient relationship is characterized as a relationship in which the patient can feel relief and closeness to the nurse (Moyle, 2003).

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RATIONALE

The literature review reveals that the phenomenon of the nurse–patient encounter and patient participation are closely linked to each other in the nursing-care process. The encounter is described as the beginning of the nursing-care process, and the encounter can, in itself, either create or hinder the possibility for patient participation in hospital care. As a phenomenon, the encounter and the patient’s participation depend on both the nurse and the patient. Still, the nurse has a professional responsibility to establish and promote the encounter in hospital care. Despite the fact that encounters are the foundation for effective care, they are not always easily accomplished in hospital-care settings.

The literature review indicates a lack of research focusing on nurses’ views of shortcomings in hospital care. However, knowledge about nurses’ views regarding shortcomings in nursing-care encounters in hospital care is important. This thesis will provide knowledge about nurses’ views on shortcomings that can be used so that nurses can avoid situations where shortcomings are likely to occur. This knowledge also implies preparation based on learning from known situations where shortcomings are common. In addition, more knowledge about patients’ experiences and needs related to participation during the hospital stay is essential for providing care in accordance with their expectations and needs. This thesis provides an understanding of meanings that patients ascribe to the phenomenon of participation. The understanding of participation in a hospital-care setting is of relevance because of the particular vulnerability and disadvantage embedded in being a patient in a hospital. Care and nursing that consider the phenomena of shortcomings and participation can create conditions for good hospital-care encounters as outlined from the perspectives of patients and nurses. This thesis further touch on how norms and values can influence how care is perceived by patients and nurses.

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THE AIM OF THE LICENTIATE THESIS

The overall aim of this licentiate thesis was to describe encounters in hospital care from the perspectives of nurses and patients.

Specific aims of the papersPaper I. The aim was to describe nurses’ views of shortcomings in patient care encounters in one hospital in Sweden.

Paper II. The aim was to elucidate meanings of participation in hospital care as narrated by patients.

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METHODS

This licentiate thesis is qualitatively designed and epistemologically situated in the naturalistic field of research, meaning that the context is viewed as necessary for understanding human behavior (cf. Patton, 2015). By applying qualitative research, I have set out to study phenomena in their natural settings, thereby attempting to make sense of or interpret the studied phenomena in terms of the meanings that nurses and patients bring to them (cf. Denzin & Lincoln, 2000).

ContextThe setting for this study was one smaller hospital with five different wards in the northern part of Sweden. The hospital has emergency and planned care that could contribute to a variety of experiences both from nurses’ (I) and patients’ (II) perspectives. The hospital included wards for rehabilitation, orthopedics, medicine, and palliative care, with about 20 beds on each ward. Every ward has different ward rooms, from a single room for one patient to rooms that can have three patients.

Participants and procedure Study IA sample of 15 registered nurses (RNs) from five different wards participated in study I. The criteria for inclusion were being an RN with at least six months of full-time service in hospital care. The head of every ward informed the nurses about the study at their nursing meeting. The RNs were asked if they would like to participate in a focus group discussion (FGD) and discuss their views about shortcomings in healthcare encounters. Those who were interested in participating received envelopes with written information about the study and an informed consent, which they signed and left at the ward. After their acceptance to participate in the FGD, three focus groups (FG) were arranged. One FG was homogeneous, i.e., the RNs worked in the same ward. The other two groups included RNs working in different ward settings. The RNs participating in the FGD ranged from 28 to 61 years of age (md=36.5) and had worked as nurses for 2 to 42 years (md=12.5) in different hospital wards.

Study IIA sample of 15 patients (13 women, 2 men) in different hospital wards participated in study II. The criteria for inclusion were being a patient in hospital care for more than 72 hours and a willingness to discuss their participation during their hospital stay. The patients participating in study II were asked if they wanted to participate in the study by one nurse at each specialty, and a total of five wards were included. Those patients who wished to participate were provided with an informational letter regarding the study and an addressed envelope containing a letter for their

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informed consent. After they sent the informed consent to me, I contacted them and gave them additional information about the study. Then, a time and place for each interview was decided, according to each participant’s wishes. Everyone who responded to express an interest in participating in the study (n=15) gave his or her consent. The participants ranged in age from 18 to 87 years (md=54). They had different illnesses or conditions that had led to their hospital care, and their time at the hospital ranged from three days to three months.

Data collectionStudy IAs the overall aim in study I was to describe nurses’ views of shortcomings in patient-care encounters in one hospital, FGDs were conducted for data collection (Morgan, 1997). Three FGDs with five RNs in each group were conducted in a quiet conference room at the hospital. Each FGD began by clarifying the aim of the study and providing information about confidentiality and anonymity. Two vignettes were used to stimulate the discussions (cf. Lewis Lanza, Carifio, Pattison, & Hicks, 1997). A vignette is a short story about a hypothetical character or characters in specific circumstances; the FG participants’ are invited to reflect upon these vignettes. This technique is useful for capturing people’s perceptions, beliefs, and meanings related to specific situations (Lewis Lanza et al., 1997). The vignettes used in this study described complaints from two patients; these had been sent to the Patient Advisory Committee in northern Sweden. The complaints, one from a male and the other from a female, related their experiences of being offended, questioned, and neglected’ and how their hospital stay had caused them uncertainty. Every FGD started with a reading of the vignettes together, and then the participants were invited to reflect on the vignettes and discuss their own experiences about shortcomings in hospital-care encounters. At each FGD, I acted as a moderator by listening actively and guiding the discussion; the third author (S.Söderberg) acted as an observer by paying attention to nonverbal communication and contributing a summary after each session (cf. Morgan, 1997). The FGDs lasted approximately 90 minutes and were recorded and transcribed verbatim by me.

Study IIAs the overall aim in study II was to elucidate meanings of participation in hospital care as narrated by patients, interviews with a narrative approach were chosen for data collection. Conducting narrative interviews means asking the interviewees to relate their stories regarding their experiences instead of interrupting them to ask questions. By using narrative interviews, researchers can gain insights into how people comprehend their lives (cf. Mishler, 1986; Sandelowski, 1991). Narrative interviews were conducted with 15 patients with more than 72 hours of hospital care. Each interview started by asking the patient to narrate an occurrence when he or she experienced participation during the hospital stay and/or an occurrence

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when he or she did not experience participation. When needed, questions to clarify their experiences were asked, e.g., would you like to explain further, how did you feel then, can you give an example. Each interview ended with the same question: Do you have anything to add concerning participation in regard to your hospital stay that has not been said? The interviews lasted between 30 minutes and 90 minutes (Md=72 minutes) and were recorded and transcribed verbatim by me.

Data analysisStudy IGuided by the aim of describing nurses’ views of shortcomings in patient-care encounters, a method of analysis appropriate for best meeting the aim of the study was chosen. A qualitative thematic content analysis was used to analyze the transcribed FGDs (cf. Downe-Wamboldt, 1992). According to Patton (2015), content analysis refers to qualitative data reduction; the method takes a volume of qualitative material and identifies core consistencies and meanings. During the analysis, the following steps were taken. The analysis began by reading the entire text several times to acquire a sense of the contents. Then, meaning units that reflected the aim of the study were identified, extracted, condensed, and coded. The coded meaning units were sorted and categorized based on similarities and differences in content. This categorization was performed in several steps, with constant reference to the original text to prevent the loss of any aspects of the content. The analysis resulted in four categories, which, later in the analysis process, were related to each other and subsumed into two themes.

Study IIGuided by the aim to elucidate meanings of hospital care as narrated by inpatients, a phenomenological hermeneutic interpretation was used. In the search for meaning and not just content, the interviews were interpreted in the three interlaced phases: the naïve understanding, the structural analysis, and a comprehensive understanding (cf. Lindseth & Norberg, 2004). The analysis began with reading the transcribed interviews several times to achieve a first interpretation, i.e., the naïve understanding. The naïve understanding provided the direction for the second phase, the structural analysis. In this phase, attention was paid to an explanation of the text; this included a variety of examinations of parts of the text to validate the initial understanding obtained from the naïve reading. In this phase, the text was divided into meaning units by identifying parts and patterns of meaningful content. The meaning units were seen as one or several sentences that express one meaning. These meaning units were condensed, i.e., the essential meaning of each meaning unit was expressed in everyday language as concisely as possible, and the meaning units were compared and sorted to identify meaningful relationships between them. Finally, the meaning units were abstracted and grouped into four subthemes and one main theme. The text was analyzed in Swedish and then translated to English in regard to the subthemes and main theme.

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In the last phase, the comprehensive understanding, the text was interpreted in its entirety. The naive understanding, the results from the structural analysis, and the author’s pre-understanding were brought together, and the literature that could explain and provide a deeper understanding of the phenomenon was read. The whole interpretation process involved a constant movement between parts and the whole, a spiral where the whole course of the parts and the parts themselves are included in the understanding of the whole. A constant dialectic movement between understanding and explaining that provided a new comprehensive awareness took place (cf. Lindseth & Norberg, 2004).

Ethical considerationsIn this licentiate thesis, the nurses’ and the patients’ descriptions and reflections are the starting point for acquiring knowledge. Oliver (2003) highlighted the importance of considering research participants as the center of the research process and, thereby, acknowledging their view on the subject matter.Ethical aspects were continually and carefully considered from the early stage throughout the entire research process. A balance between searching for knowledge and ethical aspects was the priority. The ethical aspects, comprehension, willingness to voluntarily participate, confidentiality, and an anonymous presentation of the findings were central (cf. Polit & Beck, 2016). All participants, nurses and patients, were given information both in written form and verbally. Information about the nature of the study and the focus of the interviews was explained to the nurses and the patients in the information letters and at the beginning of the FGDs and the interviews. The information stated that participation was voluntary and that participants could withdraw from the study at any time without providing an explanation and without repercussions. Being interviewed or asked to describe situations can affect the individual and induce feelings of distress but can also provide participants with opportunities to share their experiences with those willing to listen. It is critical that interviewees feel safe sharing and describing their experiences; therefore, a permissive atmosphere and the assurance of confidentiality are essential (Kvale & Brinkmann, 2014)..The participants were also reassured that the findings would be presented in such a way that none of them as individuals could be recognized or identified. All participants gave their informed consent both verbally and in written form.

Both studies followed the ethical principles of the Helsinki Declaration (2014). In study I, the manager of the hospital involved gave permission for the study to be performed, and the ethical group at the university approved the study. Approval for conducting study II was received from the Regional Ethical Review Board in Umeå (Dnr. 2012-438-31Ö).

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FINDINGS

Themes, categories, and subthemes in paper (I) and (II) are presented in Table 1. The results from the two papers are presented separately.

Table 1: Overview of themes (n=3), categories (n=4) and subthemes (n=4) in paper I and II

Paper Theme Category and subtheme

I Disregarding the person’s unique needs

Information without consideration of the patient’ needs

Not being completely present in the meeting

Difficulty managingobstacles

Lack of time as an obstacle

Lacking awareness of patients’ vulnerability

II Being an involved co-creator and seen as an important person in a trustful context

Being a co-creator in the care

Being able to rely on competent health care professionals

Understanding one´s own situation

Feeling safe in a cohesive and concordant setting

Paper INurses’ views of shortcomings in patient care encounters in one hospital in SwedenThe results of this study show that the main reason for shortcomings in healthcare encounters, according to the nurses in this study, was disregard for patients’ unique needs. The nurses stated that one problem was that the patient information provided was not always consistent with the patient’s needs, or that the patient did not understand the information. They discussed that diagnosis, age, and gender affected how they gave information to patients and how, for instance, they expected younger patients to be more active by asking questions. Based on that, they also described a risk for patients who did not make their voices heard. The

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nurses took certain everyday routines at the ward for granted and did not inform patients, for instance, where the dining room was and when lunch and dinner were served. The nurses considered it important to be present not only physically but also mentally and emotionally when meeting patients and to see the individual person and his or her needs in order to avoid shortcomings in encounters. Furthermore, the results show that nurses experienced difficulty managing obstacles over which they could not always prevail due to lack of time and/or lack of awareness of the patient’s vulnerability. Often, they saw the patient’s need, but they had many tasks to do such as checklists and routines, and they wondered where the real nursing care was and if they were doing someone else’s job. They concluded that, today, it is the economy that steers healthcare delivery. The nurses talked about the importance of respecting the patient’s integrity and helping each other as colleagues to remember and reflect in order to avoid shortcomings in healthcare encounters. They illustrated the importance of a functional working group where ethical issues were highlighted and the atmosphere was open.

Paper II Meanings of participation in hospital care narrated by patients Patients described participation in hospital care as being an involved co-creator and being seen as an important person in a trustful context. To participate meant that the patients felt they were being listened to by healthcare professionals who treated them with mutuality and confirmed them in their vulnerability. They had a need to be allowed to shift between being a patient and a human being. They described an active commitment that could be both physical and intellectual, and they considered it participation even if they did not participate physically. Handing over their care to the professionals was something they described as participation in some situations in hospital care, which made them feel at ease. They felt cared for and felt relief when they met accountable competent healthcare professionals who were there for them and understood their situation, for instance, when the professionals knew their needs before they even mentioned them and when some of the staff stood up for them when they lacked the ability to stand up for themselves. Understanding their own situation was central for participation and was achieved by opportunities to ask questions and have ongoing dialogues with professionals. Feelings of safety were brought forward by finding themselves embedded in a unified organization, where the professional cooperated and treated each other and the patient with respect. They described a sensibility in seeing how the professionals treated each other and whether or not the professionals cooperated with each other, which was important for their sense of participation. Where there was an atmosphere of openness and attention, patients experienced being treated as a person of importance during their entire stay at the hospital, and they equated it with participation.

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DISCUSSION

The overall aim of this licentiate thesis was to describe encounters in hospital care from the perspectives of nurses and patients. The findings show that shared understanding is central for both nurses and patients in hospital-care encounters (I, II). This can be understood as the nurses having a need to understand and create/prepare space for vulnerable patients in order to create a positive hospital-care encounter, and a failure to do so led to shortcomings (I). The findings also indicate patients’ needs to be understood and to understand their own situations for experiencing participation in their hospital care (II).

The findings in this thesis indicate that, in order to understand the vulnerable patient, a prerequisite for nurses in hospital settings was to see the unique person and not be distracted by the diagnosis, age, or gender of the patient (I). This can be understood as norms and values influencing the hospital-care encounter, and the nurses discussed these norms as conditions, as well as limitations, for understanding the individual person and his or her situation. The values were both conscious and unconscious, and sometimes the norms were presumptive for achieving relevant information regarding some patients, but the values could also contribute to limitations for reaching some patients (I). Similarly, Dahlborg Lyckhage and Lau (2015) highlighted functionality standards, age standards, and gender norms in health care, and that these norms always influence the quality of the care. They highlighted norms often as obstacles in the form of individual and structural discrimination, and they suggested a structured work to challenge standards in Swedish health care. According to the nurses in this thesis, they meant they had expectations regarding patients, for instance, that younger patients should be more active in their care and that they should ask questions when they needed information. Furthermore, they took for granted that the patient was familiar with certain everyday routines at the ward, and they forgot that being in a hospital was an unknown environment for the patient, which can be seen as nurses having norms about patients in hospital care (I). The normative performance about the ideal patient is described both in regard to how the patient acts and who the person is (Dahlborg et al., 2015). In accordance with this, nurses also described a risk that patients who did not make their voices heard could get less attention (I). To see the patient as an individual person with an individual life-world was central for a positive healthcare encounter and a basis for participation (I), which was also described by patients (II). The patients meant that an encounter where they were respected and treated as an important person contributed to their feelings of participation (II). This aligns with other studies showing that experiences of being treated as an important person generate feelings of participation (Eldh et al., 2006, 2010; Frank et al., 2009).

Due to the nurse’s conscious and unconscious values, reflection was something nurses highlighted as important for a positive hospital-care encounter (I).

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Reflection was important both for being aware of their own and the organization’s norms and as a contribution to increased understanding of the patient’s neglected situations. Similarly, Dahlborg et al. (2015) insisted that reflection is an important factor in structured work with standards in health care; they meant that structured work is necessary when it comes to equal healthcare encounters. They highlighted reflection as one instrument of five in structural work with norms in health care. According to Gunnarsson and Lau (2015), reflection leads to increased self-knowledge and reflexive cultural competence among professionals, where the most important elements are curiosity, reflexiveness, self-awareness, and a dose of relativism. To be a professional who is able to understand patients is to see each patient as an individual person with unique needs in his or her specific situation, and an encounter where the professional understands the patient’s situation is described as communication that generates hope and strengthens the person (Säll Hansson, Fridlund, Brunt, Hansson, & Rask, 2011), which can be seen as strengthened autonomy and identity.

At the same time, when nurses discussed the importance of understanding patients for a positive hospital-care encounter, they highlighted the importance of creating/preparing space for the patient (I). In the nursing literature, this space is described as a room where the patient experiences a meaningful encounter through dialogue (Gustafsson et al., 2013b), and Frank et al. (2009) showed that patient participation is equated with care where the patient has a clear space. In this thesis, this space is described as a mutual room of respect where the nurse identifies the individual patient’s needs concerning knowledge, support, and consolation (I), and the patient experiences involvement and strengthened self-esteem (II). To achieve this space, nurses must use themselves as tools, and they considered themselves as professionals responsible for creating this space. Both their verbal and nonverbal communication was of significance and they highlighted how their body language was important to get the patient to understand they were available and there for them (I). Other studies have also demonstrated that, as a professional, making oneself available for the patient means making room and time for the patient (Fredriksson & Eriksson, 2003; Holopainen, Kasén & Nyström, 2014), and an encounter where the caregiver has a sense of how the patient feels creates a space for both the patient and the caregiver and gives them both an opportunity for self-reflection (Holopainen, Kasén, & Nyström, 2015). In this way, Eriksson (2006) showed that being present and being there for the patient is important for professionals in order to alleviate suffering among patients, something the patient expects from hospital care. Eriksson meant that a person who suffers needs acts of love over and over again. This statement is in accordance with patients’ descriptions of participation in hospital care in this thesis (II). The patients described situations where the professional knew their needs even before they had announced them, where professionals asked them about their experiences, and where some of the staff stood up for them when they lacked the ability to do so themselves (II). This appears as patients feeling that professionals paid attention to

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them and their experiences and that professionals really cared gave them a sense of participating. This can be understood as when professionals created a space for vulnerable patients, it made them feel important and like co-creators in the care received.

Furthermore, the nurses in this thesis highlighted the importance of their emotional and mental presence in the encounter and how this total presence was difficult to achieve in relation to today’s effective hospital care and a common reason for shortcomings in hospital-care encounters (I). Nurses described organizational obstacles over which they could not always prevail, such as routines, checklists, and a lack of time, and how these affected their opportunities to create a space for the vulnerable patient (I). Although the nurses in this thesis could understand the importance of checklists and routines for equitable qualitative care, they questioned it. In accordance with that reasoning, Gunnarsson and Lau (2015) showed how routines can put the individual patient’s needs in the alternative, but routines about encounters can also help and ensure that all patients receive equal care. These advantageous routines are developed from patients’ experiences of encounters in different healthcare contexts, which highlight the importance of knowledge about patients’ experiences. Routines are, in the same manner as reflection, considered an instrument when it comes to working with organizational structures. The nurses in this thesis meant that they often saw the patient’s needs, but they experienced that they did not have the time to cater to these needs (I). This finding aligns with Pearcey (2010), who showed how nurses described that a lack of time influenced emotional care especially, and how the lack of time made it difficult to manage all of the requirements and all pressures in today’s hospital care. The organizational obstacles described by the nurses in this thesis (I) are in contrast to an organization that is considered to provide and support presumptions for professionals to accomplish the kind of care expected by the vulnerable patient (Marshall, Kitson, & Zeitz, 2012; Reeves, West, & Barron, 2005).

Studies describing organizations that create opportunities for nurses to create a space for patients can be understood as conducive environments where nurses and patients can meet in partnership (Ekman, 2014; Finfgeld-Connett, 2008). Such conductive environments are described as organizations that focus on caring and on the nurse’s professional maturity and moral foundations (Finfgeld-Connett, 2006, 2008). These studies highlight how both personal and professional maturity among staff can contribute to professionals being creative and going beyond routines to act on behalf of their patients. Similar to nurses’ descriptions of organizational obstacles in this thesis (I), patients who participated in study II described situations related to organizations’ obstacles for not considering participation in hospital care. These situations contained a lack of continuity in their care related to new staff, poorly informed professionals, and a lack of coordination and teamwork among healthcare professionals (II). These findings indicate that participation in one’s hospital stay is strongly influenced by cooperation, continuity, and coherence in the organization.

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In line with this, Hartgerink, Cramm, Bakker, Eijsden, Mackenbach, & Nieboer (2014) showed how an enhancement in the team climate and the attendance of diverse professionals during multidisciplinary meetings can improve coordination in health care. In addition, Kitson (2009) found that successful innovation in healthcare organizations occurs when individuals and teams are involved, and that healthcare improvements need to be viewed as an interactive entity and not as machinery. In this thesis, participation in hospital care assumes a trustful, coherent context where cooperation and continuity are experienced by patients.

Lack of time was a factor that affected conditions whereby nurses could create a space for the individual patient in this thesis (I) and has also been shown to be a hindrance for good qualitative care in today’s hospital health care (Pearcey, 2010; West, Barron, & Reeves, 2005). Similarly, Davis (2005) showed that time has a tremendous impact on patients’ expectations of nursing care. But at the same time, the study questions the time that a caring presence requires and highlights how more-experienced nurses use their intuitive actions to accomplish regularly scheduled activities. In addition, Finfgeld-Connetts (2008) highlighted personal and professional maturity when it comes to caring and presence in health care. This can be understood as a need to develop maturity among professionals, a quality that is often achieved by reflection (Gunnarsson & Lau, 2015; Svanström, Andersson, Rosén, & Berglund, 2016). Svanström et al.’s (2016) study about implementing increased patient involvement and autonomy in care show reflection as a key component. Reflection is necessary in the process of changing work routines and approaches, and their study showed that the process led to increased self-confidence and feelings of improved competence among professionals. In line with this, nurses who participated in study I for this thesis also discussed the importance of relying on their competence and knowledge, and how reflection could contribute to this with increased experience in difficult situations (I). Svanström et al. (2016) showed that this implementation process is not easy and that changing approaches takes time and requires patience. Based on this, there is a need for time for regular reflection among professionals, as well as time for the patient–nurse encounter. In contrast to the focus on the negative time aspect, Holopainen et al. (2015) showed that even brief encounters can have caring elements that leave indelible traces on a patient’s inner world and help him or her to make sense of his or her situation, which was a prominent meaning of participation in hospital care described by patients (II). Based on this, the time factor thus affects the hospital-care encounter, but it is only one aspect for creating a space for the vulnerable patient in hospital settings.

When patients narrated situations about participation in their hospital care, they described situations of meeting responsible, competent, and committed professionals and how doing so made them feel at ease and confident, and they also gave descriptions of wanting to hand over their entire situation to the professionals (II). This was not described as a contrast to situations where they wanted to be

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involved but rather as different ways of describing participation in hospital care. This could be understood as a need for both involvement and a handing over for participation and autonomy in hospital care. In alignment with that, Kvåle and Bondevik (2008) showed that, in the same manner, it is important to invite patients to take part in decision making; it is also important to be attentive to them when they are not willing in order to support participation and dignity among patients. Therefore, we can understand that both of these alternatives are important for autonomous decisions in hospital care. In contrast, Nygårdh et al. (2011) stated that it is important to identify underlying factors when patients do not want to participate in decisions; implicitly, patients want to decide. Their study equated participation in decision making to empowerment, which can be interpreted as a norm that the ideal patient should participate actively in decisions regarding his or her care, and it is considered a weakness if the patient wants to hand over decision making to the professionals. In this thesis, these different kinds of participation are not to be seen as opposites; instead, it is important for both to be possibilities for patients’ experiences of participation and autonomy in hospital care. It is important that the patient retain a sense of self and to be receptive to care (Halldorsdottir, 1996) and also to give the patient the right and the space to be free to be dependent upon care (Strandberg, Åström, & Norberg, 2002). These findings indicate that patient participation is a paradoxical phenomenon in the context of hospital settings. It can be understood that being a patient in a hospital-care context often involves suffering and endurance, which can imply a need for passivity and a desire to hand their care over to professionals, and sometimes it implies active cooperation.

The phenomenon of patient participation can, according to the findings in this thesis, be understood as the patients having a need for understanding their own situation and feeling coherence within their hospital care. The patients described a need for confirmation of their situation and opportunities for asking question and having dialogues with professionals (II), which is in line with nurses’ ideas about preparing a space for the patient (I). The patients meant that the atmosphere and the attitudes among the professionals affected their experiences of participation. Patients described situations where they recognized nuances of the professionals’ values through their way of treating each other and a hierarchy. These findings can be understood as the patient in hospital care being sensitive to all the attitudes among the professionals and to all activities performed in hospital settings, and they interpret the atmosphere according to whether or not it is inviting due to their vulnerability. In line with this, Halldorsdottir (2008) showed how the vulnerable patient is easily hurt and easily set off balance, as well as easily encouraged and supported, which indicates that the professionals need to be aware of their attitudes not only about patients but also about each other, in order to realize patients’ experiences of participation. These can be small differences for the professionals, but for the patient, they can be crucial for the entire hospital stay and for future meetings with healthcare professional. Similarly, Marshall et al. (2012) showed how

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patients equate the type and quality of care they receive in a hospital with the staff that provided it; i.e., the staff and the care are considered synonymous by patients. Their study shows that patients expect connectedness, involvement, and attentiveness during their hospital stays, and they expect staff to provide the conditions for these. This aligns with Martinsen’s theory, where the call from the vulnerable patient is the focus, and situations require caregivers’ sensibility and actions (Martinsen, 2006, 2008).

METHODOLOGICAL CONSIDERATIONS

When conducting this licentiate thesis, I had a pre-understanding as a registered nurse with experiences in hospital care and as a lecturer with experiences in nursing education. I also had experience as a doctoral student in nursing. My pre-understanding could be not only a strength but also a limitation. Throughout the entirety of the research process, I have strived to be aware of this pre-understanding and to control it (cf. Nyström & Dahlberg, 2001). To remain as open-minded as possible, I have reflected on every step in the research process together with my supervisors and colleagues. According to Lindseth and Norberg, (2004) we can revise, broaden, and deepen our awareness of pre-understanding through critical reflection. However, Dahlberg, Dahlberg, and Nyström (2008) state that openness can never be absolute as our prejudices stand in the way of complete openness, which means that absolute objectivity is unattainable.

Participants in the study leading to this thesis were selected through a purposive sample based on criteria that ensured that they had a variety of experiences. This, as well as their willingness to share their experiences, contributed to rich data. According to Sandelowski (1995), the most important factor is that the data contain wide, rich, and varied content. A limitation in this thesis is that the participants in both studies were recruited from only one hospital; this might have an impact on the results.

In study I, we aimed to describe nurses’ views of shortcomings in hospital-care encounters; to collect data, we used FGDs. In FGDs, participants are engaged in an interaction that focuses on attitudes and experiences (Morgan & Spanish, 1984; Patton, 2015); therefore, FGDs were considered to be a suitable method. All data collection methods have strengths and limitations. According to Patton (2015), when using a FG, the group should be homogeneous, but to have richness of data, variations among the attitudes represented in the group are necessary. Based on this, we invited registered nurses from one hospital in Northern Sweden to participate. A total of 15 registered nurses participated, and we organized three FGs with 5 participants in each, since 4 to 8 participants is regarded as appropriate in FGDs (Kitzinger, 1995).

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In the FGDs, vignettes were used since these are described as a useful technique for capturing people’s perceptions and beliefs (Lewis Lanza et al., 1997). The use of vignettes can be seen as a strength since these contributed to free-flowing discussions and the richness of the data.

In Study I, we used qualitative thematic content analysis to analyze the transcribed FGDs. Throughout the entire analysis process, my supervisors and I discussed similarities and differences in categories and themes in order to reach a consensus with the overarching aim of achieving trustworthiness (cf. Downe-Wamboldt, 1992). To obtain the participants’ opinions of the findings, I presented the preliminary findings at the hospital for the nurses participating in the FGDs. A strategy for exploring the credibility of results is member checking, whereby results are returned to participants to check for accuracy and resonance with their actual experiences (cf. Holloway & Wheeler, 2010).

For study II, the data were analyzed using a phenomenological hermeneutical method, which is seen as appropriate in the search for meaning and not just content (Lindseth & Norberg, 2004). This method involves a validation through three interlaced phases: the naïve understanding, the structural analysis, and the comprehensive understanding (cf. Lindseth & Norberg, 2004). In this study, this validation was taken into consideration through a process of moving back and forth between the parts and the whole and between naive understanding and structural analysis. Throughout the entirety of this analysis, my supervisors and I discussed and reflected upon the interlaced phases (cf. Lindseth & Norberg, 2004). During the whole process, there has been a dialectic movement between understanding and explaining that has given a new comprehensive awareness of the phenomenon of participation in hospital care (cf. Lindseth & Norberg, 2004).

Throughout the research processes in both studies I and II, attempts have been made to describe all the steps accurately, which is, according to Lincoln and Guba (1985), a qualification to increase trustworthiness in the research process. To achieve credibility, the research process was conducted so that it would describe participants’ experiences accurately and truthfully. Representative quotations from the transcribed text were chosen as a way to increase the credibility of the results (cf. Sandelowski, 1994). The findings from this thesis are contextual but can most likely be transferred to similar situations and contexts. According to Graneheim and Lundman (2004), transferability means that it is the reader’s decision whether or not the findings are transferable to other contexts.

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CONCLUDING REMARKS

This licentiate thesis focuses on encounters in hospital care from the perspectives of nurses and patients. Knowledge concerning nurses’ views of shortcomings can be used to avoid situations where shortcomings are likely to occur and can also contribute to preparation as a result of learning from known situations where shortcomings are common. In addition, greater knowledge about patients’ experiences and needs related to participation during their hospital stays is essential for providing care in accordance with patients’ expectations and needs, and in relation to the particular vulnerability and disadvantage embedded in being a patient in a hospital setting.

This thesis confirms that nurses are considered to be responsible for a hospital-care encounter where participation is achieved. Nurses’ values, attitudes, competence, commitment, and responsibility are conditions important for positive hospital-care encounters and patient participation, as well as time for reflection among professionals and time for patient–nurse encounters. This thesis suggests the critical importance of an organization that supports time for structured reflection in order to support nurses in their professional development in the same manner as time for patient–nurse encounters in hospitals. Both reflection concerning values and situations and time for encounters can be understood as a prerequisite for positive hospital-care encounters and patient participation. This thesis also provides new knowledge regarding understanding meanings that patients ascribe to the phenomenon of participation in hospital care. When looking at the meanings of participation, no contradiction between active involvement in decisions or handing decisions over to trustworthy professionals was found. Both these opportunities to choose were described as participation, and patients also described that the choice to hand decisions over was an active choice that must be available in the context of hospital care without being seen as a weakness on the part of the patient.

This thesis concludes that every patient must be respected and seen as a person with an individual life-world, which in turn means that everyone has similar and diverse needs that must be considered in order to support experiences of positive health encounters and participation in hospital care.

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SUMMERY IN SWEDISH – SVENSK SAMMANFATTNING

En strävan efter en delad förståelse: Patienters och sjuksköterskors syn på vårdmöten inom sjukhusvård.

Det övergripande syftet i denna licentiatuppsats var att beskriva vårdmöten inom sjukhusvård utifrån sjuksköterskor och patienter. Denna licentiatuppsats fokuserar särskilt på sjuksköterskors uppfattningar av tillkortakommande i patientmöten (I) samt innebörden av delaktighet i sjukhusvård beskriven av patienter (II). Tidigare forskning visar att vårdmöten och delaktighet är nära sammanbundna och centrala inom alla vårdkontexter. Mötet beskrivs som början av en vårdrelation som kan minska lidande och kan antingen skapa förutsättningar eller hinder för patient-delaktighet inom sjukhusvård. Det finns lite forskning som fokuserat på sjuksköterskors beskrivna tillkortakommanden i vårdmöten på sjukhus. Denna kunskap kan bidra till att undvika situationer där detta ofta sker samt ge förutsättning och förberedelse för sjuksköterskor i dessa situationer, att ta lärdom av andras erfarenheter. Trots forskning inom patientdelaktighet finns det ett behov att inom sjukhuskontext belysa patienters enskilda upplevelser och beskrivningar av detta fenomen. Mer kunskap om patienters beskrivna upplevelser gällande delaktighet inom denna kontext kan ge sjuksköterskor och annan vårdpersonal förutsättningar att kunna möta och stödja patienter utifrån deras unika upplevelser och behov.

Licentiatuppsatsen består av två delstudier, delstudie I, där syftet var att beskriva sjuksköterskors uppfattningar av tillkortakommanden i vårdmöten med patienter inom sjukhusvård och delstudie II, där syftet var att beskriva innebörden av delaktighet inom sjukhusvård beskriven av patienter. Urvalet i studierna var ändamålsenligt och kriterierna var i delstudie I; legitimerad sjuksköterska med minst sex månaders heltidstjänstgöring, vilket bidrog till att 15 sjuksköterskor med varierande ålder från 28-61 år (md: 36,5år) och varierande erfarenhet av att ha arbetat som legitimerad sjuksköterska (2-42 år, md: 12,5) deltog. I delstudie II var kriterierna att personen hade varit/eller var patient på ett sjukhus mer än 72 timmar och var villig att berätta om sina upplevelser gällande delaktighet. I delstudie II deltog 15 patienter i olika åldrar, från 18 år till 87 år (md: 54) med varierande erfarenheter av sjukhusvård, diagnoser, avdelningar, samt vårdtider (3 dagar - 3 månader).

I delstudie I utfördes tre FGD med fem legitimerade sjuksköterskor i varje. Vid var och en dessa användes två vinjetter, baserade på anmälningsfall till patientnämnden i norra Sverige, för att stimulera gruppen till diskussioner. Vid dessa träffar agerade jag moderator, vilket innebär att lyssna aktivt och ansvara för att alla kom till tals och huvudhandledare (S.Söderberg) agerade observatör, vilket innebär att vid slutet av varje FGD sammanfatta vad som sagts. Varje FGD pågick under 90 minuter och skrevs ut ordagrant. Materialet analyserades med en tematisk innehållsanalys.

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I delstudie II genomfördes intervjuer av en berättande karaktär där personerna blev uppmuntrade till att berätta situationer där de upplevt sig delaktiga och/eller situationer där de inte upplevt sig delaktiga under sin sjukhusvistelse. Intervjuerna pågick under 30-90 minuter (md: 72 min) och skrevs ut till ordagrann text. Intervjutexterna analyserades sedan med en fenomenologisk hermeneutisk tolkning. Med hjälp av denna metod beskrivs innebörden av ett fenomen genom texttolkning. Genom texttolkning av levd erfarenhet kan en fördjupad förståelse för det undersökta fenomenet nås.

Den första delstudien beskriver hur sjuksköterskor ansåg att det centrala för ett gott vårdmöte med patienter inom sjukhusvård var att se den unika personen och dennes behov och när de som sjuksköterskor inte gjorde detta bidrog det till tillkortakommanden i vårdmötet. De beskrev bland annat hur de gav information som inte var i överensstämmelse med patienters behov, att informationen var för generell, att de gick på autopilot och att de inte alltid kontrollerade om patienter förstått eller vad de ville ha information om. Patienter var ofta i en utsatt stressad situation som de inte alltid tog hänsyn till, konstaterade sjuksköterskorna. Dessa mindre bra vårdmöten kunde uppkomma på grund av både medvetna och omedvetna värderingar, både hos sjuksköterskorna själva samt den verksamhet de verkade i. De beskrev att dessa värderingar ibland var till nytta och ibland till hinder men att det var viktigt att bli medveten om dessa genom reflektion tillsammans. Sjuksköterskor beskrev i delstudie I hur ett bra vårdmöte krävde att de i sin profession var närvarande både kroppsligt och mentalt, att de visade sig tillgängliga för patienter. Sjuksköterskor menade att när de inte var totalt närvarande kunde detta leda till mindre bra vårdmöten. Sjuksköterskor ansåg att de alltid var tvungna att försöka skapa utrymme för att möta den enskilda patienten och dennes behov men att det inte alltid var lätt på grund av organisatoriska strukturer. Brist på tid beskrevs många gånger bero på rutiner och checklistor som tog tid från patienter, samtidigt som sjuksköteskor ansåg dessa som viktiga förutsättningar för en jämställd vård. Förståelse för patienters utsatta situation var något som beskrevs viktigt för ett bra vårdmöte, samt ett hinder när det saknades och sjuksköterskor framställde vikten av att påminna varandra inom arbetsteamet om detta. En fungerande arbetsgrupp där det fanns möjlighet att reflektera och diskutera värdegrundsfrågor samt etiska frågor var en förutsättning för bra vårdmöten inom sjukhusmiljö.

Den andra delstudien beskriver innebörden av delaktighet, inom sjukhusvård utifrån patienters upplevelser, som att vara en involverad betydelsefull person i en tillitsfull kontext. Patienter gav beskrivningar av att bli förstådd och att förstå sin situation när de beskrev upplevelser av delaktighet inom sjukhusvård. När de som personer blev sedda och hörda samt att professionella brydde sig och behandlade dem med respekt beskrev de en ökad självkänsla, vilket bidrog till en känsla av medskapande i vården. När patienter mötte kompetenta, ansvarstagande och engagerade professionella kände de en tillit som de beskrev som delaktighet. De

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beskrev ett aktivt engagemang hos dem som personer som kunde vara både fysiskt och intellektuellt och ibland redogjorde de för tillfällen när de ville lämna över hela situationen till pålitliga professionella. Patienter gav beskrivningar av, betydelsen av att få möjlighet att välja eller välja bort beslut, att välja att personal skulle ta över var ett viktigt alternativ när det gällde innebörden av delaktighet inom sjukhusvård. För att förstå sin situation som patient inom sjukhusvård var det viktigt att få möjlighet att fråga och ha dialog med professionella. Även professionellas attityder mot varandra samt hierarki inom arbetsgruppen påverkade patienters upplevelser av delaktighet. De menade att professionellas sätt att behandla varandra speglade deras människosyn, vilket antingen inbjöd till eller motverkade delaktighet. Andra förutsättningar för patient-delaktighet var att det fanns ett samarbete bland professionella samt en kontinuitet inom vården.

Sammanfattningsvis visar denna licentiatuppsats att professionellas sätt att vara, deras värderinga, attityder, kompetens, engagemang, och ansvarstagande, är betydelsefullt för bra vårdmöten och patient-delaktighet inom sjukhusvård. Det är den enskilde patientens och dennes behov som är det centrala och utifrån resultatet i denna licentiatuppsats är det viktigt att inse att det även måste finnas en möjlighet att få välja bort eller att få vara beroende och trots det känna delaktighet och autonomi. Resultaten visar även på vikten av en sammanhängande, samverkande och kontinuerlig organisation där tid för strukturerad reflektion för de professionellas utveckling samt tid för vårdmöten prioriteras. Detta för att skapa förutsättningar att varje enskild patient ska bli sedd som en unik person med individuella behov utifrån dennes livsvärld.

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ACKNOWLEDGEMENTS

This study was supported by the Department of Health Science, Luleå University of Technology, Luleå, Sweden, and I am grateful for this support. I would like to express my sincerest gratitude to everyone who has had any part in the work for this thesis.

My sincere gratitude to:

The nurses who generously participated in this study and shared their experiences, and for giving their time in regard to the presentation of the preliminary results.

The individuals who had been or were patients in hospital care who generously participated in the study and shared their experiences.

My first main supervisor, Professor Siv Söderberg, at that time, Head of the Division of Nursing, Department of Health Science, Luleå University of Technology, for critical discussions and a sharp focus on the core concepts of nursing science.

My second main supervisor, Professor Stefan Sävenstedt, Division of Nursing, Department of Health Science, Luleå University of Technology, for sharing knowledge and constructive discussions.

My third main supervisor, Associate Professor Malin Olsson, Division of Nursing, Department of Health Science, Luleå University of Technology, for your support and always constructive criticism.

My co-supervisor, Assistant Professor Birgitta Lindberg, Division of Nursing, Department of Health Science, Luleå University of Technology, for your constant consideration and accuracy concerning the whole research process.

My co-author in study I, Professor Lisa Skär, at that time, Division of Nursing, Department of Health Science, Luleå University of Technology.

Colleagues and friends at the Division of Nursing, Department of Health Science, Luleå University of Technology, for conversations about life, work, and studies.

The librarians at Luleå University Library, Luleå University of Technology, for always being supportive.

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My former colleagues at Piteå älvdals sjukhus, for their interest and assistance.

To all my friends, for all the enriching conversations about life.

My dear Mom and Dad, Anita and Ove. Thank you for all your support and love.

Last but not least, and most important in my life, my dear family. My husband Lars and my beloved sons Daniel and Simon, and Daniel’s partner Agnes and their newborn son, Harry. Thanks for your love!

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Paper I

ORIGINAL ARTICLE

Nurses’ views of shortcomings in patent care encounters in one

hospital in Sweden

�Asa Nilsson, Lisa Sk€ar and Siv S€oderberg

Aim and objective. To describe nurses’ views of shortcomings in patient care

encounters in one hospital in Sweden.

Background. Shortcomings in encounters in healthcare have increased during

recent years. Dissatisfaction with encounters in healthcare can affect patients’

experiences of dignity, health and well-being.

Design. A qualitative design was used in the study.

Methods. Three focus group discussions with 15 nurses were conducted. The

nurses worked in five different wards. The focus group discussions were subjected

to a thematic content analysis.

Results. The results are presented in two themes. The first theme, ‘Disregard for

the patient’s unique nursing needs’, describes that information without consider-

ation of the patient’s needs, and nurses not being completely present in the meet-

ing with the patient affected healthcare encounters and experiences of quality of

care. In the second theme, ‘Difficulty managing obstacles’, nurses described care

situations over which they could not always prevail due to lack of time and/or

lack of awareness of the patient’s vulnerability.

Conclusion. The findings illustrate the importance of nurses and their approaches

to patients. The nurse’s attitude is important for the patient’s experiences of par-

ticipation, security, dignity, and well-being. The findings also illustrate the impor-

tance of routines in the healthcare organisation that support and facilitate

positive encounters between patients, their close relatives and the healthcare staff.

Relevance to clinical practice. Nurses require understanding, presence and com-

mitment in their relationships to every unique patient, and their goal should be to

adopt interventions with regard to positive healthcare encounters based on each

patient’s experiences of good nursing care.

Key words: focus groups, healthcare encounter, nurses, thematic content analysis,

vignettes

What does this paper contribute

to the wider global clinical

community?

• Nurses and their attitudes areintegral to patients’ experiencesof healthcare encounters withinhospital care.

• Nurses should have a mutualdialogue based on each individ-ual patient’s need for knowledgerather than to merely inform.

Accepted for publication: 18 September 2014

Authors: �Asa Nilsson, RN, MSc, Doctoral Student, Division of

Nursing, Department of Health Science, Lule�a University of Tech-

nology, Lule�a; Lisa Sk€ar, PhD, RN, Professor, Division of Nursing,

Department of Health Science, Lule�a University of Technology,

Lule�a; Siv S€oderberg, PhD, RNT, Professor, Division of Nursing,

Department of Health Science, Lule�a University of Technology,

Lule�a, Sweden

Correspondence: �Asa Nilsson, Doctoral Student, Division of Nurs-

ing, Department of Health Science, Lule�a University of Technology,

SE-97276 Lule�a, Sweden. Telephone: +46 920493297.

E-mail: [email protected]

© 2015 John Wiley & Sons Ltd

Journal of Clinical Nursing, doi: 10.1111/jocn.12886 1

Introduction

This study is part of a larger research project about encoun-

ters in healthcare that focuses on both satisfaction and dis-

satisfaction from the perspectives of patients, relatives and

healthcare personnel. The results from the project (Sk€ar &

S€oderberg 2011, S€oderberg et al. 2012) have shown that

shortcomings are common in healthcare encounters. Short-

comings in this context mean that the patients felt that they

had not been listened to and respected by healthcare per-

sonnel. Previous research (Sk€ar & S€oderberg 2011, S€oder-

berg et al. 2012, Poteat et al. 2013, Wessel et al. 2013) has

found that shortcomings affect patients’ experiences of dig-

nity, health and well-being.

Background

People seeking healthcare expect their encounters with pro-

fessionals to be based on a shared understanding. However,

healthcare professionals may adopt a medical perspective in

which curing the disease is the primary goal and patients’

expectations can be disregarded (Toombs 1992). Patients

who are treated in an undignified manner by healthcare pro-

fessionals can suffer from a negative experience of care.

According to Eriksson (2006), violating a person’s dignity is

the most common form of suffering related to care because it

involves a lack of confirmation of the person. Awareness of

the vulnerability of people experiencing illness and their

dependency on healthcare professionals’ abilities to meet

their needs is fundamental in nursing care. Studies have dem-

onstrated that being treated with dignity is important to both

the experiences and the outcome of healthcare and the

patient’s experience of the quality of care (Beach et al. 2005,

Jacobs 2009, Ebrahimi et al. 2012).

Good care is characterised by patients as support and the

experience of being seen as a whole person by committed

professionals. Furthermore, good care is perceived by

patients as being provided when they receive satisfactory

information through dialogue, and their questions and con-

cerns are taken seriously and confirmed (Kv�ale & Bondevik

2008). Attree (2001) described good quality care as individ-

ualised patient-focused care based on the patient’s needs. In

contrast, a lack of opportunities for the patient to influence

his or her care can generate feelings of powerlessness and

the perception of low-quality care.

According to Croona (2003), nurses are responsible for

creating positive healthcare encounters to develop caring

relationships with patients and their relatives. Nurses must

be aware of their own role as well as the roles of patients

and relatives because the caretaking relationship involves

an imbalance of power (Fredriksson & Eriksson 2003,

Brilowski & Wendler 2004, Bell & Duffy 2009). This

means that nurses need to be aware of factors that may

affect the caretaking relationship, such as the patient’s

health status, the patient’s attitude towards participating in

treatments, and his or her trust and confidence in health-

care relationships. If this understanding is lacking, there is

a risk that the healthcare encounter may involve shortcom-

ings (cf. Eriksson 2006). Therefore, the aim of this study

was to describe nurses’ views of shortcomings in patient

care encounters in one hospital in Sweden.

Methods and design

A qualitative research design was considered the most

appropriate approach to describe nurses’ experiences of

shortcomings in healthcare encounters. Data were collected

through focus group discussions (FGD), which offer effec-

tive methods of capturing a concentrated amount of data

for a particular purpose (Morse 1997). Data were analysed

using thematic content analysis (cf. Downe-Wamboldt

1992).

Participants

A purposive sample of 15 registered nurses (RNs) from five

wards working in a hospital in Northern Sweden partici-

pated in the FGDs. The participants ranged from 28–

61 years of age (md = 36�5) and had worked as nurses for

2–42 years (md = 12�5). The nurses were asked if they

wanted to participate in a FGD to discuss their views about

shortcomings in healthcare encounters. The inclusion crite-

rion was being a RN with at least six months of full-time

service.

Data collection

Three FGDs were conducted with five RNs in each group.

The FGDs were conducted in a specific room at the hospi-

tal, and each discussion lasted approximately 90 minutes.

At each FGD, the first author acted as a moderator by lis-

tening actively and guiding the discussion (cf. Morse 1997).

The third author acted as an observer by paying attention

to nonverbal communication and contributing a summary

after each session. Each FGD began by clarifying the aim

of the study and providing information about confidential-

ity and anonymity. Two vignettes were used to stimulate

the discussions. A vignette is a short story about hypotheti-

cal characters in specific circumstances upon which the in-

terviewees are invited to reflect. It is a useful technique to

© 2015 John Wiley & Sons Ltd

2 Journal of Clinical Nursing

�A Nilsson et al.

capture people’s perceptions, beliefs, and meanings related

to a specific situation (Lewis Lanza et al. 1997). The vign-

ettes used in this study described stories of a male and a

female patient who had experienced shortcomings in

encounters with healthcare personnel. Both vignettes were

developed based on previous research (Sk€ar & S€oderberg

2011, S€oderberg et al. 2012).

The vignettes are described below.

Vignette: female (48 years)

I felt so offended that I was not me anymore . . . why should I walk

around in a coat with a white shirt, a coat just because I’m a

woman, while the men were given a T-shirt and a pair of pants?

My problem was the clothes, because I myself would go down to

the pharmacy. I also had long white socks that fell down all the

time and no shoes . . . it was so humiliating . . . if someone had just

told me, “Here you have a shower, here you can get new clothes,”

and if anyone had helped me to hide the drainage . . . You know, I

didn’t know anything until I woke up on Saturday morning, then

came a patient who was “a qualified patient”. She arranged for me

to have a television, told me where I could find clothes, and where

my wardrobe was . . . I had no idea . . .

Vignette: Male (60 years)

It was a lot of questions. You rang for example about something,

and then the nurse came and said, “Oh well, what do you want

now again?” . . . When you are a patient and experience the disad-

vantages it causes you, you note the choice of words, body lan-

guage and so on . . . I’m thinking some will definitely not work in

healthcare . . . A large majority are very good, but there are such

contrasts . . . When I was in insane pain and I was sweating and I

wanted something and they came with Paracetamol . . . I said it

would not help. I wanted something stronger, and it became a dis-

cussion about my pain . . . I should reasonably have precedence in

such a thing, I think . . . My wife also told me how shocked she

was when I was discharged, and one personnel said to her, “Don’t

spoil him” . . . It was unnecessary, just rudeness . . . What was com-

forting was that we were several persons in the same wardroom . . .

we had the support of each other . . . we were in the same boat in

the same way . . . No, ugh, I do not want to think about it . . .

After reading and listening to the vignettes, the partici-

pants were invited to discuss. The three FGDs were

recorded digitally and transcribed verbatim.

Data analysis

The transcribed FGDs were analysed using thematic content

analysis in accordance with Downe-Wamboldt (1992). The

analysis began by reading the entire text several times to

acquire a sense of the contents. Meaning units that reflected

the aim of the study were identified, extracted, condensed

and coded. The coded meaning units were sorted and cate-

gorised based on similarities and differences in content.

This categorisation was performed in several stages, with

constant reference to the original text to prevent the loss of

any aspects of the content. The analysis resulted in four cat-

egories that were subsumed into two themes.

Ethical considerations

The study followed the ethical principles of the Helsinki

Declaration (2014). The manager of the hospital involved

gave permission for the study to be performed. The partici-

pants were informed about the study and were reassured

that their participation was voluntary and that they could

withdraw from the study at any time. They gave their

informed consent and were guaranteed confidentiality and

an anonymous presentation of the findings. The ethical

group at the university approved the study.

Results

The analysis of the FGDs resulted in two themes with four

categories (Table 1). The themes and categories are pre-

sented in the text below and illustrated by quotations from

the FGDs. The quotations reference the respective FGD.

Disregarding the person’s unique needs

Information without consideration of the patient’s needs

The nurses emphasised that it was important for patients

and their close relatives to receive information according to

their needs. They stated that they informed patients, but

the information was often of a general character. This was

in contrast to what they had learnt during their nursing

education. The participants explained that they took for

granted things that could be important for the patient and

that it was important to remind each other of this fact.

Table 1 Overview of themes (n = 2) and categories (n = 2) con-

structed from the focus group discussions (n = 3) with RNs

Themes Categories

Disregarding the

person’s unique needs

Information without

consideration of the patient’s needs

Not being completely

present in the meeting

Difficulty managing

obstacles

Lack of time as an obstacle

Lacking awareness of

patients’ vulnerability

© 2015 John Wiley & Sons Ltd

Journal of Clinical Nursing 3

Original article Nurses’ views of patient care encounters

They described situations in which they were operating ‘on

autopilot’ and said that they sometimes forgot to put them-

selves in the patient’s situation:

We inform, inform, inform, inform . . . and then you read that you

should listen, but I don’t listen so much . . . In the nursing pro-

gramme, it was a lot about how to listen as a nurse, and it was

handy tips, but I don’t follow them . . . I inform, inform the whole

time . . . but do they [the patients] understand? (FGD 1)

The nurses reflected on why patients did not understand

the information they were given, even though it was pre-

sented both verbally and in writing. One explanation they

discussed was that the information was overwhelming and

was delivered to a patient who was in a stressful situation.

Patients may be overwhelmed by the amount of informa-

tion they are given especially when they are experiencing

stress. The participants said the best way to present under-

standable information to the patient was to ask questions,

such as what the patient wanted to know or what the

patient did not understand about the information. They

emphasised the significance of using language that the

patient could understand, as well as the importance of feed-

back from the patient, and a climate that invited the patient

to ask questions. One respondent described incidents in

which it appeared that patients did not understand informa-

tion they were given but were afraid to ask questions, and

the nurses all reacted with horror:

It’s important that we feel that we are on the same level, that I get

feedback and that she [the patient] understands what I’m saying

and that she feels free to ask when not understanding. (FGD 3)

The nurses discussed the fact that the patient’s age could

be an important factor in determining how they structured

the information provided to the patient. The expectation

was that younger people were more likely to take the initia-

tive and ask more questions than older people were. The

participants said they guided older people more and gave

them more information. The nurses considered this a gener-

ational issue; they stated that, consequently, the demands

on nurses’ communicative abilities would continue to

increase. Some of the nurses saw active patients as a chal-

lenge because they forced them to individualise the infor-

mation. They also described the risk for patients who do

not make their voices heard because these patients may

receive less attention. Another risk the nurses described was

when a patient had few questions, which may lead nurses

to provide less information:

Thus, I’ve a feeling that the young ones have a better ability to

understand and ask questions, and we informed older people more.

We have a feeling that we have to take care of them more. The

younger ones manage anyway. (FGD 2)

Not being completely present in the meeting

The nurses described how they could make a difference

through their body language in their meetings with

patients. They said, for example that when they felt

stressed, it could be difficult to be present emotionally and

mentally, and this could have a negative effect on the

meeting with the patient. A prerequisite for a beneficial

encounter was when they saw the patient as a person and

not only as his or her diagnosis, age or gender. The

importance of being accepted, seen and believed was the

basis for a positive encounter, and the nurses said that this

could be achieved only when they were completely present

in the meeting with the patient. The participants said that

the first encounter with the patient was vital for the

patient’s experience of the continuation of care. One nurse

stated:

You never get a second chance to make a first impression. (FGD 2)

The nurses said it was important to treat the patients and

their close relatives in ways that made them feel comfort-

able. They considered it essential to avoid saying things

such as, ‘You are not my patient; I know nothing about

you’ or ‘I’ve not heard anything’. The participants emphas-

ised that it was important that their body language was

harmonious with the information being provided to the

patient. They highlighted the need to allow time to meet

the patients. The nurses considered it their responsibility to

show their availability for the patients and their close rela-

tives:

You have to see the person . . . so to speak . . . even if you’ve little

time . . . you have to stay and listen and show it with your body

language as well. (FGD 1)

Difficulty managing obstacles

Lack of time as an obstacle

The nurses stated that they did not always have the power

to influence the lack of time, which affected their ability to

meet patients’ nursing needs. They stated that they could

identify patients’ and their relatives’ needs for knowledge,

support and consolation. The problem for the nurses was

that they often did not have the time to meet those needs

which they considered necessary for patients’ feelings of

safety and participation. This situation frustrated the

nurses, and they described it as unsatisfactory. The nurses

© 2015 John Wiley & Sons Ltd

4 Journal of Clinical Nursing

�A Nilsson et al.

lacked the time needed to do the work for which they were

trained. They had many different tasks as nurses, and some-

times they felt like they were doing someone else’s tasks as

well. One nurse said:

I felt that it [the work at the ward] is like a conveyor belt. They

[the patients] come to the ward and they got surgical treatment.

The quicker they are rehabilitated, the quicker they can go home,

and new patients come . . . but what happens with the nursing care?

(FGD 3)

The nurses stated that the routines and checklists were

prerequisites for appropriate and safe care but were time-

consuming. They said that lack of time influenced nursing

care and made it difficult to meet patients’ needs.

We tick off patient status . . . it’s on the list . . . If the patient is afraid

of needles, it doesn’t matter, you have to tick off, for example, the

skin status . . . you often have a time frame to meet. (FGD 1)

The nurses indicated that changes and efficiency in

healthcare contributed to a lack of time. Some of them

remembered when patients came to the wards the night

before a surgery, and there was time for dialogue with the

patient. Then, it was possible to see the patient in a differ-

ent way than today and to meet the patient’s individual

needs. The participants described this as an ideal healthcare

encounter. The nurses concluded that today the economy

steers healthcare.

Lacking awareness of patients’ vulnerability

The nurses described difficulties managing situations in

which they witnessed other professionals acting poorly in

meetings with patients and relatives. These situations threa-

tened the integrity of the patients and their close relatives.

Such situations included healthcare personnel talking over a

patient’s head, patronising a patient, ignoring or dismissing

a patient’s experience, or pursuing power through their pro-

fession. The nurses considered such situations to be obsta-

cles to positive healthcare encounters, including ongoing

care and eventual future contact with healthcare. They

described the importance of demonstrating respect for the

patient’s integrity, as becoming a patient can threaten per-

sonal integrity:

It is difficult when you hear a colleague or at the round when a

doctor talks like the patient was not there . . . how should you react

and act? (FGD 3)

The nurses considered that caring situations that demon-

strated a lack of respect for patients’ integrity resulted in

negative attitudes towards care among the patients and

their close relatives. When the nurses became aware that a

patient felt that his or her integrity had been violated, they

always contacted the patient or a close relative to talk

about the experience, and these encounters often ended

with satisfied patients and relatives.

The participants emphasised the importance of being

aware of the patients’ vulnerability. They expressed the

importance of talking with patients about topics that inter-

ested them and not only about their illness. These were cen-

tral to creating a good relationship. They stated that it was

not always possible to create a relationship with the

patient, but they were responsible for attempting to do so.

It was important for the nurses to be professional and to

use their experience and knowledge when meeting with

patients and their relatives. They emphasised the need for a

well-functioning team in which they could talk about prob-

lems and find solutions:

When you get into a difficult situation where you don’t reach the

person . . . it’s important to lean towards the profession and feel

safe . . . I’ve learned this, and I know that I manage the situation.

(FGD 2)

Discussion

The results of this study show that the main reason for

shortcomings in healthcare encounters, according to the

nurses in this study, is disregard for patients’ and their

relatives’ unique needs. The nurses’ stated one problem

was that the patient information provided was not always

consistent with the patient’s needs or that the patient did

not understand the information. Furthermore, the nurses

considered it important to be present not only physically

but also mentally and emotionally when meeting patients

and to be aware of patients’ vulnerabilities to avoid short-

comings in encounters. Furthermore, the results show that

nurses experienced difficulty managing obstacles over

which they could not always prevail, such as routines,

checklists and a lack of time to do everything expected of

them.

According to the nurses in this study, the foundation of

positive healthcare encounters was seeing the patient as a

person with unique needs and desires. This finding is con-

sistent with Lavoie et al. (2006) and N�aden and Saeteren

(2006), who stated that healthcare professional should be

attentive and focused on the person’s specific needs. Lavoie

et al. (2006) argued, with reference to Levinas, that the

face of the other invites nurses to take care of the other.

The face constantly reminds us of the other person’s

humanity, and a person’s face demands respect. According

to Suhonen et al. (2000), it is important to respond to each

© 2015 John Wiley & Sons Ltd

Journal of Clinical Nursing 5

Original article Nurses’ views of patient care encounters

patient as a unique individual to provide effective nursing

care.

Furthermore, the results of this study indicate that the

nurses saw the unique person by ensuring that patients and

their relatives understood the care that was planned. This

kind of communication was a prerequisite for a positive

healthcare encounter. The nurses stated that the informa-

tion given to the patient should be based on the patient’s

need for knowledge. It was most important to have a con-

versation with the patient and his or her close relatives to

ensure that they understood the information. These findings

are consistent with Eldh et al. (2006), who focus on the

importance of information tailored to the patient’s unique

situation and needs.

The nurses stated that there was a difference between

older and younger patients’ needs for information. Specifi-

cally, older patients had increased needs, and they

expected younger patients to take greater initiative and

ask more questions. Florin et al. (2006) argue that older

patients often take a more passive role in their treatment

than younger patients do, and S€orlie et al. (2004) believe

that younger patients have more requirements than older

patients. Regardless of the patient’s age, it is important to

personalise information to create trust and confidence

(Eriksson & Svedlund 2007). According to Kv�ale and

Bondevik (2008), care in which individual patients are

heard and are treated with respect will increase their feel-

ings of dignity and their participation in the caring

situation.

The results show that nurses’ engagement and presence

in meetings with patients and relatives were prerequisites

for good encounters. When nurses did not see the patient

as unique, it resulted in shortcomings in the quality of the

healthcare encounter and, in turn, affected the patients’

ongoing care and eventual future contact with healthcare

providers. Nurses also described that their attitudes were

important for patients’ experiences of participation, secu-

rity, dignity and well-being. According to L€ogstrup (1994),

there is self-disclosure in all communication and trust in

each relationship. Further, L€ogstrup noted that there is an

unspoken demand in every meeting, and one can never have

a relationship with another person without holding a part

of the other’s life in his or her hand. According to Croona

(2003), nurses carry the sole responsibility for the caring

relationship, and this was also found to be the case with

the nurses in this study. Lavoie et al. (2006) believe that all

persons, especially healthcare professionals, are responsible

for other people; thus, nurses are required to be present for

patients, a result also found in this study. Studies have

shown that healthcare professionals’ engagement with and

availability to individual patients provides security and

relieves suffering (S€orlie et al. 2004, Ferrell & Coyle 2008).

L€ogstrup (1994) argues that through our attitudes, we help

each other to give the world its shape, whether light or

dark, threatening or safe. According to Rehnsfeldt (2005),

nurses’ attitudes affect patients’ entire life-worlds. It is

therefore important that nurses attempt to respond with a

generous and compassionate attitude, which aligns with the

results of this study.

Mok and Chi Chiu (2004) state that the quality of a

caring relationship depends on the involvement of the

nurse and the patient. Thus, nurses who develop a trusting

relationship practice person-centred care. Sayers and de

Vries (2008) state that a trusting relationship can be devel-

oped through maturity, experience, knowledge and aware-

ness of the self and others, a result also described by the

nurses in this study. A trusting relationship requires a dia-

logue with active listening and feedback that generate feel-

ings of meaningfulness for both the patient and the nurse

(Abma et al. 2008, Ferrell & Coyle 2008). The nurses in

this study noted the importance of dialogue and feedback

instead of simply providing information to the patient.

This requires a genuine interest in the patient, empathetic

understanding, sincerity, self-awareness and the ability to

develop a trusting relationship. Eriksson (2006) suggests

that nurses initiate this trusting relationship when they

observe and address the needs that are implicit in the indi-

vidual patient. Thus, when patients recognise that the

nurse understands and cares for them, a trusting relation-

ship is established.

The results of this study show that a lack of time may be

a prominent obstacle to positive healthcare encounters. The

nurses saw the needs of patients but felt that they did not

always have the time to comfort, listen, inform, or explain

because the time was required for routines, rounds, or simi-

lar activities. This was frustrating and resulted in their feel-

ing that they were unable to provide the care they wanted

to give. West et al. (2005) describe how nurses experience

stress and suggest that one source of stress among nurses is

not having the time to provide the level of support they

would. They argue that a lack of time negatively influences

the quality and safety of nursing care. According to Cassidy

(2006), patient information is not a priority because of a

lack of time; most of the time is spent on the patient’s

physical health status. Rehnsfeldt (2005) believes that it is

not the time but the attitude that makes a difference in

healthcare encounters, and Croona (2003) mentions atti-

tudes and jargon along with lack of time, stress and organi-

sational factors as limitations on the possibility for positive

healthcare encounters.

© 2015 John Wiley & Sons Ltd

6 Journal of Clinical Nursing

�A Nilsson et al.

Limitations and strengths of the study

The strengths of this study are the FGDs and the vignettes.

The vignettes functioned as a springboard for a free-flowing

discussion. This was an effective tool for uncovering nurses’

perspectives and understanding shortcomings in healthcare

encounters. The analysis was conducted jointly and

reviewed independently by all the authors, which added rig-

our to the study. The preliminary results were presented to

the participants of the FGDs to ensure rigour and to estab-

lish the credibility of the data, consistent with Lincoln and

Guba (1985). However, because this qualitative study

involved a limited number of participants and was con-

ducted in a single hospital in Northern Sweden, it is diffi-

cult to generalise the findings beyond this local context.

Conclusions

This study shows that nurses and their approach to the

profession are of great importance for positive and effec-

tive healthcare encounters and patients’ experiences of

good nursing care. Seeing every patient as unique and

adapting interventions accordingly is a challenge for every

nurse and requires commitment, presence and understand-

ing. These findings suggest the importance of a functional

working group in which ethical issues are highlighted and

the atmosphere is open. The study further illustrates obsta-

cles to positive healthcare encounters, which should be

highlighted, so nurses can become aware of and learn to

address them. This study suggests evaluations of nurses’

tasks concerning information, checklists and routines so

that individual patients and their close relatives can experi-

ence positive healthcare encounters. On the basis of these

findings, we suggest that nurses should engage in dialogue

with patients and their close relatives about patients’ needs

instead of merely providing information. This approach is

important for nursing care based on a shared understand-

ing.

Relevance to clinical practice

Nurses require understanding, presence and commitment in

their relationships to every unique patient, and their goal

should be to adopt interventions with regard to positive

healthcare encounters based on each patient’s experiences

of good nursing care.

Acknowledgements

This study was supported by the Department of Health

Science, Lule�a University of Technology, Lule�a, Sweden.

The authors are grateful to the participants in the study.

Disclosure

The authors have confirmed that all authors meet the IC-

MJE criteria for authorship credit (www.icmje.org/ethi-

cal_1author.html), as follows: (1) substantial contributions

to conception and design of, or acquisition of data or ana-

lysis and interpretation of data, (2) drafting the article or

revising it critically for important intellectual content and

(3) final approval of the version to be published.

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8 Journal of Clinical Nursing

�A Nilsson et al.

Paper II

Title: Meanings of participation in hospital care as narrated by

patients

Running title: Meanings if participation in hospital care

Åsa NILSSON* RN, MSc, Doctoral Student

Birgitta LINDBERG* RN, PhD, Assistant Professor

Siv SÖDERBERG RNT, PhD, Professor

Malin Olsson* RNT, PhD, Associated Professor

*Division of Nursing, Department of Health Science, Luleå University of Technology, Luleå, Sweden

Deparment of Nursing Sciences, Mid Sweden University, Östersund, Sweden

Correspondence to this article should be addressed to:

Åsa Nilsson, Division of Nursing, Department of Health Science, Luleå University of Technology, SE-97 187 Luleå, Sweden.

Phone: +46920 49 32 97,

E-mail: [email protected]

Abstract

Patient participation is an important factor for patients to experience satisfaction and quality with hospital care. Still, little is known about what participation actually means for patients in the specific context of hospital settings. Therefore, the aim of this study was to elucidate meanings of participation as narrated by patients in hospital care. Narrative interviews were conducted during fall 2013 until spring 2014, and then phenomenological hermeneutically interpreted. In this study, the comprehensive understanding shows that the phenomenon of participation in hospital care is experienced by the patient when being a co-creator, and seen as an important person in a trustful context. The findings illustrate that an experience of an open, cooperative, and coherent environment invites and contributes to participate despite the vulnerable situation. The study highlights the importance of responding to each patient as a person, who sometimes has a need to participate actively and sometimes wants to hand over and assume the role of patient in the hospital care setting.

Keywords: hospital care, inpatients, lived experiences, narratives, nursing, patient participation, phenomenological hermeneutic, qualitative research, Ricoeur

Summary statement

What is already known about this topic:

Hospital stay is commonly expressed as a potential threat to the autonomy and integrity of the patient as a person.

Patient participation is a key concept in person-centered care and is not always easily achieved in the busy hospital care settings.

There is little research about the meanings of patients experiences of participation during hospital stays.

What this paper adds:

Participation in hospital care is experienced by the patient when being a co-creator, and seen as an important person in a trustful context.

Patient participation requires that patients are allowed to participate actively but also to have permission to hand over and assume the role of the patient in the hospital setting.

Health care professionals’ attitudes towards each other and their mutual cooperation are highly visual to inpatients and influence the patients experiences of participation.

The implications of this paper:

To support patient participation the patient must be viewed as a co-creator of care and an important holder of significant knowledge that impacts the outcome of care in hospital settings.

To support experiences of patient participation patients must be allowed to take both an active and a more passive role depending on how they experience their vulnerability, condition and situation during a hospital stay.

Meanings of patient participation in hospital care as narrated by patients

Introduction

Studies focusing on hospital care show that being an patient involves specific feelings of vulnerability and a hospital admission is commonly expressed as a threat to the autonomy and integrity of the patient as a person1-7. Eriksson8

pointed out that patients have difficulty asking for help concerning common basic needs and being neglected by health care personnel causes suffering. Several studies 4, 9-12 have emphasized the patients’ experience of being autonomous as crucial in experiencing oneself as an influential part of the care received. Berglund et al.1 concludes that person-centered care (PCC) and patient participation is a prerequisite for reduce suffering among patients.

The healthcare of today has a goal to deliver PCC and according to Kitson, Marshall, Bassett and Zeitz13 patient participation is the key concept. Patient participation is viewed both as a principle of patient-centered care13 and a way of enacting PCC15. Studies16, 17 have by conceptual analysis showed patient participation consists of four cardinal attributes; an established relationship, a sharing of power with patients, sharing information and knowledge, and mutual engagement in mental and physical activities. Studies 10,18-19 have identified the importance of formulating care situations based on a shared dialogue with respect for the patients’ knowledge, since that knowledge is seen both as supportive and health strengthening.

Patient participation is described as a dynamic process that occurs in the context of care giving. It changes over time and is integral to the work of nurses and caregivers20. Similar to this, Obeid21 pointed out how this process implies that the patient’s role goes beyond solely having a voice, but includes being an actual part of the planning of care. Patient participation in medical settings has been shown to be difficult to achieve, and there is an obvious challenge to build relationship with patients due to pressures in current hospital environments22. Other studies23-

24 focuses on how lack of time de facto affects patient participation in a negative manner and decreases the patient satisfaction of the quality of care. Patients’ willingness to participate, nurses’ approaches, and confusion around expectations and roles are challenging factors for increased patient participation24.

To summarize, the existing literature shows that patients and nurses both have important roles to play when it comes to patient participation in hospital care. The mutual collaboration of patients and nurses is of great importance. The stressful environment of today's hospital wards highly influences patient participation. Previous research has mainly focused on describing participation as a concept but a more distinct focus on what patients describes as participation is pointed out as a gap in the front of research25, 26. To achieve further knowledge

about the phenomenon of what participation actually means for patients, and thus target their needs and expectations, the essence as well as the various nuances of patient participation during a hospital stay, is needed. To gain this knowledge, our aim of this study was to elucidate meanings of participation in hospital care, as narrated by patients.

Method

Design, participants and procedure

A qualitative research design was used to gain an understanding of what patient participation means for patients in hospital care. Narrative interviews27 were conducted and analyzed with a phenomenological hermeneutic interpretation28.A purposive sample of fifteen patients receiving hospital care in the northern part of Sweden participated in the study. The participants included 13 women and two men, ranging in age from 18 to 87 years (md=54). The inclusion criteria were adults with a hospital stay of 72 hours or more and a willingness to talk about their experiences of patient participation. The participants had various conditions such as orthopedic disorders, heart problems, stroke, abdominal discomfort, spinal disorders, and infections. The different alignments of care implied that the participants’ time at the hospital ranged from three days to three months. The recruitment hospital wards were specialized in stroke, orthopedics, and different medical diseases. The recruitment was conducted by three nurses, one in each specialty. The nurses were instructed to ask and inform 15 patients they thought could narrate their experience of patient participation. Patients who wanted to participate were provided an information letter regarding the study and a letter with informed consent regarding their interest to participate. After receiving an informed consent the first author (ÅN) contacted the participants and gave them further information about the study. All of those who had been asked to participate submitted their interest to participate in the study (n=15). The interviews took place in quiet and separated environments where the participants felt comfortable.

Ethical Considerations

The study was approved by the regional ethical board (dnr 2012-438-31Ö). The participants were promised confidentiality, which was achieved by excluding names from all interviews and transcripts, resulting in a situation in which only the interviewer (ÅN) possessed this information. The participants were guaranteed that the result of the study would be presented in a manner that would not reveal particular settings or persons.

Data collection

Fifteen interviews were conducted with a narrative approach27. The interviews started with asking the patient to narrate an occurrence when they experienced

participation during their hospital stay, an occurrence when they did not experience participation, or both. When needed, questions were added to help clarify their experiences, e.g., would you like to explain further, how did you feel, and can you give an example. Each interview ended with the question: do you have something to add concerning patient participation in hospital stay that has not been addressed? The interviews lasted between 30 and 90 minutes. The interviews were conducted, recorded, and transcribed verbatim by the first author (ÅN). Data collection was performed during fall 2013 and spring 2014.

Data analysis

A phenomenological hermeneutic interpretation was used to analyze the patients’ experiences of participation in hospital care. We interpreted the interviews in three phases: naïve understanding, structure analysis, and comprehensive understanding28. The analysis begun by reading the transcribed interviews to achieve a first interpretation: the naïve understanding. The naïve understanding provided the direction for the second phase: the structural analysis. In this phase, the text was divided into meaning-units by identifying parts and patterns of meaningful content. The meaning-units were then condensed, i.e. the essential meaning of each meaning unit was expressed in everyday language and next, these were compared and sorted to identify meaningful relationships between them. Finally, the meaning units were abstracted and grouped into four themes. We analyzed the text in Swedish and then translated it into English at the theme level. In the last phase, the comprehensive understanding, we interpreted the text in its entirety. The naive understanding, the structural analysis, and our pre-understanding were brought together. Literature, relevant in the field of hermeneutics and existential philosophy provided us with new thoughts that could explain and widen our understanding of the phenomena. The literature was reviewed by us in order to shed light on the phenomena we identified. The whole interpretation process involved a constant movement between parts of the text and the whole, where we as interpreters placed ourselves in a constant dialectic movement between understanding and explaining, resulting in a new comprehensive awareness of the phenomenon28. The interpretation was conducted in a constant dialogue among the authors.

Results

Naïve Understanding

Our naïve understanding, concerning meanings of patients experiences of participation in hospital care, seemed to imply participation based on a sense of being cared for as a person, and being able to rely on competent health care professionals reckoned as accountable. Feeling seen, being listened to and surrounded by a ward-atmosphere of openness was of equal importance. Sensing mutuality in meetings with health care personnel and being able to understand,

and reach a sense of coherence seemed to be beneficial in perceiving participation in one’s own care. To hand over, and feel confidence by health care professionals’ consideration and cooperation was essential. As well as having an ongoing dialogue and continuity throughout the hospitalization. Whenparticipants felt they were being patronized or suppressed, the health care professionals lacked commitment, or that the team lacked continuity, their sense of participation seemed to decrease.

Structural Analysis

The structural analysis resulted in four themes and is presented below with citations from the interviews.

Being a co-creator in the care

Patients described meeting health care professionals who showed a personal interest in them, and was attentive to their experiences. When patients felt that their own information concerning their situation was important for health care professionals, they felt both heard, and seen, and this contributed to a sense of co-creation. In contrast, patients also recalled experiences of no involvement. They described how they had felt treated as a number rather than an individual. Care situations when they received comments that they were not the department’s patient were pronounced. These impersonal approaches were said to affect their self-esteem negatively and prevented participation. Patients emphasized the importance of a mutual relationship where the health care professionals showed respect for them as individuals. Even attitudes between health care professionals affected their experiences of participation, and they opined that health care professionals’ attitudes towards each other reflected their humanity. Patients meant that a mutual relationship with a sincere dialogue strengthened their experience of participation. One inpatient said when she talked about participation in hospital care:

It was like a communication from one person to another and there was a kind of dignity, it’s supposed to be normal, with respect, on the same level, and the health care professionals in this ward practiced that sort of communication [p. 4].

Being able to rely on competent health care professionals

Participation in hospital care was described by confidence when health care professionals was competent, and took responsibility, and that this trusting feeling was conveyed to them as patients. Not having to worry about if ones needs during the hospital stay would be attended to was vital. Careful, competent, and accountable actions made them feel at eased, and contributed to feelings of wanting to hand over their situation to health care professionals. One participant said: “participation, I think it’s nice not having to be involved, I want to be safe, I trust those who know. If I come into a hospital, I imagine that those who are in

charge know the best for me, so I trust the staff, I must say”. Patients talked about the importance of professional health care professionals, and they characterized it as friendly, competent, and enthusiastic health care professionals. They meant that these kinds of characteristics made them feel invited to participate. They judged health care personnel as being professional due to their willingness to hand over a problem to colleagues with better knowledge when they lacked the appropriate competence, and described how these situations contributed to their feelings of trust. On the contrary, inpatients considered it odd when health care professionals did not transfer tasks to more competent workers or appeared unwilling to learn from colleagues when such opportunities were offered. They reflected on how these irresponsible situations generated feelings of uncertainty, fostering feelings of being left out, and how this resulted in an absence of participation for them as patients. Situations when health care professionals stood up for them against other health care professionals to protect them as patients were pronounced, and all these accountability, careful actions created a sense of participating even if they could not participate physically. One said:

Yes, they [the personnel] are so … they almost think and understand what I’m going to say. They say; it’s no problem. They can say things before I even dare to ask about things. They really care, you can feel and it made me feel involved, even if I can do nothing [p. 5].

Understanding one´s own situation

Being prepared for what was going to happen during the hospital stay was critical for experiencing participation in hospital care. The need for professional information in different forms about everything from routines at the ward to treatments, and test results were highlighted. Even return appointments, Internet, and stories about other patients who had experienced similar situations were described as resources that helped them feel increased coherence about their situation. Opportunities to ask questions, and have dialogues with professionals made them experience improved participation. Patients expressed a need for confirmation of their specific condition. Decisions about treatment were something they wanted to discuss, but not decide, and one stated that this should be the duty of the professionals. One explanation used by the participants when not understanding information and feeling coherency was that they were not “expert patients”, which decreased their experiences of participation. For experiences of coherence that led to participation, health care professionals had to be clear in their communication. One inpatient participant said:

And then when she [the doctor] came in, and she talked clear, she demonstrated exactly how the anatomy of the leg is, and how the bones is constructed, how muscles affect, and then I felt, yes, now I understand. Earlier I had just nodded and said okay even if I didn’t understand [p. 11].

Feeling safe in a cohesive and concordant setting

The feeling of participation increased when patients experienced continuity in their care. They described an increased participation when everyone in the health care organization contributed with their competence. Patients meant that their experience of participation improved when the professionals cooperated, and showed each other respect. Patients also talked about the importance of teamwork among the health care staff. Patients who had experienced a lack of continuity in their care, primarily related to new staff, poorly informed professionals, and a lack of coordination between different care instances, expressed a pronounced need for continuity. Having to constantly retell their story every day decreased experiences of participation, and they expressed an urgent need for an ongoing dialogue throughout their hospital stay. The participants questioned the organizational systems, ranging from professions’ roles, hierarchies, and medical rounds to political interference. They said that they sometimes could sense the hierarchy, the imbalance of power among professionals, and how these situations even influenced their own experiences of participation. Patients who experienced continuity during hospitalization described this as conducive for their sense of safety and participation. In contrast to experiencing a lack of continuity and teamwork, which created feelings of uncertainty, and insecurity among patients, one said:

When there are new personnel, how far back do they read in the journal? How much do I have to tell during the medical round so they will understand, and make the right decision? Do they only read, or do they have the whole? I don’t know how much they have been referenced, or have read, or whatever it is they take note of. I feel no confidence [p. 10].

Comprehensive Understanding and Discussion

To understand meanings of participation among patients in hospital care, we found the thoughts of Paul Ricoeur concerning human life and ethics to be useful. In addition, we also relate to empirical studies with focus on participation from various perspectives in the context of hospital care.

In this study, we understand meanings of participation among patients in hospital care as a phenomenon experienced when being an involved co-creator and seen as an important person in a trustful context. This trustful context meant that the patients could rely on the health care professionals’ competence, and feel safe. In this study, as well as in previous research18-19 it is obvious that participation in hospital care concerns more than simply being involved in decision making and receiving information. Meanings of patient participation incorporate existential issues such as being a person. Being a person in this particular context simultaneously incorporates the possibility of being able to adopt the role of the patient during the hospital stay. This can be understood as there is a need among

patients to be able to hand over one self in the care of another in situations of uncertainty and vulnerability. Participation also includes having the self-esteem to take part in mutual dialogues with health care professionals in the hospital care setting.

According to Ricoeur29, a conversation built on mutuality is fundamental to compensate the well-known asymmetric relationship between persons with different role sets, as between patients and health care professionals. The experience of participation meant that the patients of this study felt that they were being listened to by health care professionals who treated them with mutuality, and confirmed them as persons. Ricouer29 pointed out the importance of being met with awareness, where you are considered as an equal person of validity. In this study, meanings of participation involve a sense of co-creation where patients felt equally heard, and seen. Health care professionals who considered and valued the insider information about the lived situation of the patient gave rise to inpatient feelings of being a co-creator of the care. This can be understood from Kristensson Uggla30, who considers that in order to establishing a partnership among patients and health care professionals, it is vital that the patient is granted the same equivalence as the health care professionals, meaning that the view of the patient is of equal status to the perspective of the health care professionals. According to Suhonen et al.24, the life- world perspective, where the focus is on what is experienced as essential here and now from the patient’s point of view, is important in involving patients and promoting their contentment with their care. Toombs31 also highlighted the importance of minimizing the impact of the often-different perspectives of health care professionals and patients, meaning that a common understanding is a prerequisite for patient-participation.

Patients described how the attitudes and dialogue among the health care professionals affected their experience of participation in hospital care. Seeing professionals treat each other with respect invited, and attracted involvement. On the contrary, patient experience of participation seemed to decrease when mutual respect was lacking among health care professionals. Ricouer29 and Schuster32

described the importance of acknowledging both patients and health care professionals as persons, possessing capacities as well as vulnerabilities. In this study, patients judged the health care professionals’ mutual attitudes, and differed among those who they believed really cared and those who just performed their work. Ricoeur29 highlights the difference between care and duty in institutional situations, which he further noted also call for responsibility and empathy from the professional. Further, Schuster32 described how nursing care without care is limping and leads to an instrumentalisation concerning the meeting between the patient and health care professionals. Patients in this study claimed that careful actions from the health care professionals created a sense of involvement despite not being able to physically participate.

In this study, participation among patients can be seen as the ability to fully trust and rely on health care professionals. Previous research33 shows that patients especially expect that nurses deliver care as a mixture of physically and emotionally attentive communication, creating a situation in which the patients trust health care professionals to have the skills and competence to meet their needs without asking. Similarly, the patients in this study described how meeting accountable and skilled professionals helped them feel like they could hand over their entire situation to the health care staff. Patients talked about health care professionals that knew their needs before they even voiced them. For patients, this can be understood as, simultaneously demonstrating a need for being seen as a person, and the need to be free to assume the role of a patient. Ricoeur34

defined a person as a whole, in which the person’s identity is unique, and intimately linked to a life history. In contrast to the uniqueness of a person’s identity, there are also roles that are critically important to being human. Being allowed to assume a role that is reversible is important in being able to find distance in an exposed situation, and finding legitimacy of being in an existential and cognitive disadvantage30. The findings of the current study demonstrate it seem significant that patients are allowed to take on the role of the patient but still remain the people they are.

For patients in this study, feeling coherence through understanding their own situation can be understood as experiencing participation in hospital care. It was vitally important for them to be in a dialogue with the health care professionals where there was an evident opportunity and openness about asking questions, and receiving confirmation concerning their specific conditions. Other studies have pointed out that shared information is a prerequisite for genuine participation10, 18-19, 35, and participation is associated with better understanding of one’s situation35. Kvåle and Bondevik36 showed that care where the individual patient feel heard and treated with respect increases the feelings of dignity and participation for the patient. A vital way to support the dignity and participation among patients is to invite them to take part in decision making, and being attentive to them when they are not willing to take part in these decisions about their own care. In this study, patients pointed out that they wished to be informed, but this did not necessarily mean that the wanted to make the decision about their treatment.

Participation among patients can be understood as feeling safe in a cohesive setting. In this study, participation occurred when the patients experienced continuity in their care and noticed experienced cooperation among the health care professionals treating them. Tutton37 showed that environment and teamwork are vital contextual issues for supporting participation among patients. Patients of this study described how a lack of continuity and coordination of care had a negative effect on their experience of participation. Another significant promoter of participation was the sense of collaboration rather than a hierarchal

dialogue, among the health care professionals. Edvardsson, Sandman and Rasmussen38 showed how a supportive care setting can create an atmosphere of ease, where the patients can experience a feeling of safety and security. Similarly, the patients of this study painted a picture of feeling at ease when they met health care professionals who mediated responsibility and used their competence in order to act on the behalf of their patients.

Study Considerations

In all qualitative research, the researcher is a part of the research process39. In this study, the first author (ÅN) tried to get the participants to freely narrate their experiences related to participation in hospital care. According to Lindseth and Norberg28, one strategy for ensuring trustworthiness in the analysis process is inherent in the comparison of the naïve understanding, structural analysis, and comprehensive understanding that takes place in the dialectical movement between the whole and the parts. In this study, the interpretation was based on our roles as RNs and researchers. While interpreting the text, our preunderstandings were revised due to our reflections, discussions, and review of the literature. According to Dahlberg, Drew and Nyström40, an essence is always understood against its horizons, an approach that we have worked with during the analysis when trying to understand the phenomenon of participation in hospital care. Throughout the analysis process, literature adoptable for PCC, and personalism were read to help us keep an open mind, and promote a broader understanding of the phenomenon of participation. The findings are what we ultimately found to be the most credible understanding of the text, and represent one possible understanding of participation in the context of hospital care. We used quotations to illustrate the participants’ views, thus giving the reader the opportunity to judge the interpretation, and trustworthiness of the study41.

Conclusion

The phenomenon of participation in hospital care as viewed from patients’ means to experience oneself as a co-creator, and to be seen as an important person in a trustful context. There is an importance in feeling listened to and cared for in this vulnerable situation which strengthened self-esteem and contributed to mutual dialogues. A trustful context meant that that the patients could rely on the health care professionals’ competence, commitment, cooperation and the continuity in the care. This trustful context promoted an understanding of one’s own personal situation and a sense of coherence and predictability in the care provided. Patient participation requires that patients are allowed to participate actively but also to have permission to hand over and assume the role of the patient in the hospital setting.

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DISSERTATIONS FROM THE DEPARTMENT OF HEALTH SCIENCE, LULEÅ UNIVERSITY OF

TECHNOLOGY, SWEDEN

Doctoral theses

Terttu Häggström. Life-story perspective on caring within cultural contexts: experiences of severe illness and of caring. (Nursing) 2004.

Inger Jacobson. Injuries among female football players. (Physiotherapy) 2006. Karl Elling Ellingsen. Lovregulert tvang og refleksiv praksis. (Health Science and

Human Services) 2006. Annika Näslund. Dynamic ankle-foot orthoses in children with spastic diplegia:

interview and experimental studies. (Physiotherapy) 2007. Inger Lindberg. Postpartum care in transition: parents’ and midwives’

expectations and experience of postpartum care including the use of videoconferencing. (Nursing) 2007.

Åsa Widman. Det är så mycket som kan spela in – en studie av vägar till, genom och från sjukskrivning baserad på intervjuer med långtidssjukskrivna. (Health Science and Human Services) 2007.

Eija Jumisko. Striving to become familiar with life with traumatic brain injury: experiences of people with traumatic brain injury and their close relatives. (Nursing) 2007.

Gunilla Isaksson. Det sociala nätverkets betydelse för delaktighet i dagliga aktiviteter: erfarenheter från kvinnor med ryggmärgsskada och deras män. (Health Science and Human Services) 2007.

Nina Lindelöf. Effects and experiences of high-intensity functional exercise programmes among older people with physical or cognitive impairment. (Physiotherapy) 2008.

Åsa Engström. A wish to be near: experiences of close relatives within intensive care from the perspective of close relatives, formerly critically ill people and critical care nurses. (Nursing) 2008.

Catrine Kostenius. Giving voice and space to children in health promotion. (Health Science and Human Services) 2008.

Anita Melander Wikman. Ageing well: mobile ICT as a tool for empowerment of elderly people in home health care and rehabilitation. (Physiotherapy) 2008.

Sedigheh Iranmanesh. Caring for dying and meeting death: the views of Iranian and Swedish nurses and student nurses. (Nursing) 2009.

Birgitta Lindberg. When the baby is premature. Experiences of parenthood and getting support via videoconferencing. (Nursing) 2009.

Malin Olsson. Meaning of women’s experiences of living with multiple sclerosis. (Nursing) 2010.

Lars Jacobsson. Long-term outcome after traumatic brain injury. Studies of individuals from northern Sweden. (Health Science) 2010.

Irene Wikman. Fall, perceived fall risk and activity curtailment among older people receiving home- help services. (Physiotherapy) 2011.

Christina Harrefors. God vård och användning av digitala hjälpmedel. Föreställningar hos äldre och vårdpersonal. (Nursing) 2011.

Agneta Larsson. Identifying, describing and promoting health and work ability in a workplace context. (Physiotherapy) 2011.

Lisbeth Eriksson. Telerehabilitation: Physiotherapy at a distance at home. (Physiotherapy) 2011.

Amjad Alhalaweh. Pharmaceutical Cocrystals: Formation mechanisms, solubility behaviour and solid- state properties. (Health Science) 2012.

Katarina Mikaelsson. Fysisk aktivitet, inaktivitet och kapacitet hos gymnasieungdomar. (Physiotherapy) 2012.

Carina Nilsson. Information and communication technology as a tool for support in home care. - Experiences of middle-aged people with serious chronic illness and district nurses. (Nursing) 2012.

Britt-Marie Wällivaara. Contemporary home-based care: encounters, relationships and the use of distance-spanning technology. (Nursing) 2012.

Stina Rutberg. Striving for control and acceptance to feel well. Experiences of living with migraine and attending physical therapy. (Physiotherapy) 2013.

Päivi Juuso. Meanings of women's experiences of living with fibromyalgia. (Nursing) 2013.

Anneli Nyman. Togetherness in Everyday Occupations. How Participation in On-Going Life with Others Enables Change. (Occupational therapy) 2013.

Caroline Stridsman. Living with chronic obstructive pulmonary disease with focus on fatigue, health and well-being. (Nursing) 2013.

Ann-Sofie Forslund. A Second Chance at Life: A Study About People Suffering Out-Of-Hospital Cardiac Arrest. (Nursing) 2014.

Birgitta Nordström. Experiences of standing in standing devices: voices from adults, children and their parents. (Physiotherapy) 2014.

Malin Mattsson. Patients’ experiences and patient-reported outcome measures in systemic lupus erythematosus and systemic sclerosis. (Physiotherapy) 2014.

Eva Lindgren. “It’s all about survival”: Young adults’ transitions within psychiatric care from the perspective of young adults, relatives, and professionals. (Nursing) 2014.

Annette Johansson. Implementation of Videoconsultation to Increase Accessibility to Care and Specialist Care in Rural Areas: - Residents, patients and healthcare personnel´s views. (Nursing) 2015.

Cecilia Björklund. Temporal patterns of daily occupations and personal projects relevant for older persons’ subjective health: a health promotive perspective. (Occupational therapy) 2015.

Ann-Charlotte Kassberg. Förmåga att använda vardagsteknik efter förvärvad hjärnskada: med fokus mot arbete. (Occupational therapy) 2015.

Angelica Forsberg. Patients' experiences of undergoing surgery: From vulnerability towards recovery-including a new, altered life. (Nursing) 2015.

Maria Andersson Marchesoni. “Just deal with it” Health and social care staff´s perspectives on changing work routines by introducing ICT: Perspectives on the process and interpretation of values. (Nursing) 2015.

Sari-Anne Wiklund-Axelsson. Prerequisites for sustainable life style changes among older persons with obesity and for ICT support. (Physiotherapy) 2015.

Anna-Karin Lindqvist. Promoting adolescents' physical activity @ school. (Physiotherapy) 2015.

Ulrica Lundström. Everday life while aging with a traumatic spinal cord injury. (Occupational therapy) 2015.

Sebastian Gabrielsson. A moral endeavour in a demoralizing context: Psychiatric inpatient care from the perspective of professional caregivers. (Nursing) 2015.

Git-Marie Ejneborn-Looi. Omvårdnad som reflekterande praktik: Att se och använda alternativ till tvång i psykiatrisk vård. (Nursing) 2015.

Sofi Nordmark. Hindrances and Feasibilities that Affect Discharge Planning: Perspectives Before and After the Development and Testing of ICT Solutions. (Nursing) 2016.

Marianne Sirkka. Hållbart förbättringsarbete med fokus på arbetsterapi och team Möjligheter och utmaningar. (Occupational therapy) 2016.

Catharina Nordin. Patientdelaktighet och behandlingseffekter inom multimodal rehabilitering och web-baserat beteendeförändringsprogram för aktivitet. (Physiotherapy) 2016.

Silje Gustafsson. Self-care for Minor Illness: People's Experiences and Needs. (Nursing) 2016.

Anna Nygren Zotterman. Encounters in primary healthcare from the perspectives of people with long-term illness, their close relatives and district nurses. (Nursing) 2017.

Licentiate theses

Marja Öhman. Living with serious chronic illness from the perspective ofpeople with serious chronic illness, close relatives and district nurses. (Nursing) 2003.

Kerstin Nyström. Experiences of parenthood and parental support during the child's first year. (Nursing) 2004.

Eija Jumisko. Being forced to live a different everyday life: the experiences of people with traumatic brain injury and those of their close relatives. (Nursing) 2005.

Åsa Engström. Close relatives of critically ill persons in intensive and critical care: the experiences of close relatives and critical care nurses. (Nursing) 2006.

Anita Melander Wikman. Empowerment in living practice: mobile ICT as a tool for empowerment of elderly people in home health care. (Physiotherapy) 2007.

Carina Nilsson. Using information and communication technology to support people with serious chronic illness living at home. (Nursing) 2007.

Malin Olsson. Expressions of freedom in everyday life: the meaning of women's experiences of living with multiple sclerosis. (Nursing) 2007.

Lena Widerlund. Nya perspektiv men inarbetad praxis: en studie av utvecklingsstördas delaktighet och självbestämmande. (Health Science and Human Services) 2007.

Birgitta Lindberg. Fathers’ experiences of having an infant born prematurely. (Nursing) 2007.

Christina Harrefors. Elderly people’s perception about care and the use of assistive technology services (ATS). (Nursing) 2009.

Lisbeth Eriksson. Effects and patients' experiences of interactive video-based physiotherapy at home after shoulder joint replacement. (Physiotherapy) 2009.

Britt-Marie Wälivaara. Mobile distance-spanning technology in home care. Views and reasoning among persons in need of health care and general practitioners. (Nursing) 2009.

Anita Lindén. Vardagsteknik. Hinder och möjligheter efter förvärvad hjärnskada. (Health Science) 2009.

Ann-Louise Lövgren Engström. Användning av vardagsteknik i dagliga aktiviteter - svårigheter och strategier hos personer med förvärvad hjärnskada. (Health Science) 2010.

Malin Mattsson. Frågeformulär och patientupplevelser vid systemisk lupus erythematosus-en metodstudie och en kvalitativ studie. (Physiotherapy) 2011.

Catharina Nordin. Patients’ experiences of patient participation prior to and within multimodal pain rehabilitation. (Physiotherapy) 2013.

Hamzah Ahmed. Relationship Between Crystal Structure and Mechanical Properties in Cocrystals and Salts of Paracetamol. (Health Science) 2014.

Johan Kruse. Experiences of Interns and General Practitioners of Communicating with and Writing Referrals to the Radiology Department. (Health Science) 2016.

For purchase information: Department of Health Science, Luleå University of Technology, S-971 87 Luleå,

Sweden.