576794 research-article2015

JFNXXX10.1177/1074840715576794Journal of Family NursingÅrestedt et al.

Article

Families Living With Chronic Illness: Beliefs About Illness, Family, and Health Care

Journal of Family Nursing 2015, Vol. 21(2) 206­–231 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1074840715576794 jfn.sagepub.com

Liselott Årestedt, RN, MSc1, Eva Benzein, RNT, PhD1,2, and Carina Persson, RPT, PhD1,2

Abstract Beliefs can be described as the lenses through which we view the world. With emerging illness, beliefs about the illness experience become important for nurses to understand to enhance well-being and healing. The aim of this study was to illuminate illness beliefs of families living with chronic illness. A qualitative design was chosen, including repeated narrative research interviews with seven Swedish families living with chronic illness. Hermeneutic analysis was used to interpret the transcribed family interviews. The result described beliefs in families, both within and across families. Both core beliefs and secondary beliefs about illness, family, and health care were revealed. Illness beliefs have importance for how families respond to and manage situations that arise from their encounters with illness. Nurses have to make space for and listen to families’ stories of illness to become aware of what beliefs may support and encourage family well-being and healing. The Illness Beliefs Model provides a touchstone whereby nurses can distinguish both individual and shared beliefs within families living with chronic illness and provide ideas for family intervention if needed. 1Faculty

of Health and Life Sciences, Linnaeus University, Kalmar/Växjö, Sweden for Collaborative Palliative Care, Faculty of Health and Life Sciences, Linnaeus University, Kalmar/Växjö, Sweden 2Center

Corresponding Author: Liselott Årestedt, Department of Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University, S-391 82 Kalmar, Sweden. Email: [email protected]

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Keywords chronic illness, families, beliefs about illness, beliefs about families, beliefs about health care, Illness Beliefs Model, hermeneutic inquiry, Sweden Living with chronic illness is not only an individual concern but also a family affair (Årestedt, Persson, & Benzein, 2014; Eggenberger, Meiers, Krumwiede, Bliesmer, & Earle, 2011). Chronic illness often implies a shift with increasing demands on individual, couple, and family functioning. The changed lives of the person with the illness (Mahon, O’Brien, & O’Conor, 2014), for spouses (Radcliffe, Lowton, & Morgan, 2013), and for families (Årestedt et al., 2014) are evidenced by a common desire to acknowledge and manage the illness (Eggenberger et al., 2011; Eriksson, Asplund, & Svedlund, 2010; Yorgason et al., 2010). Families who live with chronic illness often have to co-create both a new context for living and new patterns in their daily life that becomes an ongoing process for the family (Årestedt et al., 2014; Persson & Benzein, 2014). In this process, beliefs about illness become important for effective family functioning that will enhance well-being (Rolland, 1998) and diminish suffering. In some situations, families need help and support from nurses to find their way toward well-being. By uncovering families’ illness beliefs, nurses and families may together decide and determine the most adequate supporting strategies that will promote family health and healing. In this study, we used the Illness Beliefs Model (IBM; Bell & Wright, 2011; Wright & Bell, 2009) to uncover beliefs at both individual and family levels.

The IBM The IBM is a model for advanced practice with families, based on the principle that it is not necessarily the illness but rather the beliefs about the illness that are potentially the greatest source of individual and family suffering (Wright & Bell, 2009). We focus in this research on the definition and characteristics of beliefs as understood in the IBM. Beliefs can be defined as “the lenses through which we view the world and they guide us in choices we make, behaviors we choose and feelings with which we respond” (Wright & Bell, 2009, p. 19). A belief encompasses ideas of what is taken to be true, “‘the truth’ of a particular reality that influences bio-psycho-social-spiritual structure and functioning” (Wright & Bell, 2009, p. 27). Our core beliefs, which are often implicit, are fundamental to our personal identity. Core beliefs are basic concepts by which we live our lives and they are often accompanied by affective and physiological responses. Core beliefs are powerful and influence response to illness and family functioning (Wright & Bell, 2009).

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Beliefs emerge, develop, and are altered through our interactions with others, in different contexts such as culture, religion, workplace, and family. We influence each other’s beliefs and develop our identity through the beliefs systems that we share or do not share, for example, within families and friendships. Beliefs can distinguish one person from another but also join us together. Illness beliefs can be both facilitating and constraining. “By constraining beliefs, we refer to beliefs that decrease possibilities for discovering solutions or resolution to challenges and/or problems and often enhance suffering; facilitating beliefs, on the other hand, increase solution possibilities, decrease suffering, and invite healing” (Wright & Bell, 2009, p. 22). Depending on the circumstances and our experiences, a belief that is constraining in one context can be facilitating for another person or in another context. When illness emerges, our beliefs can become affirmed, challenged, or threatened. The IBM has been described in many contexts (Bell & Wright, 2011; Marshall, Bell, & Moules, 2010; Moules, Thirsk, & Bell, 2006; Robinson, 1998; West, Bell, Woodgate, & Moules, 2015). Using the IBM in therapeutic conversations between nurses and families is one way to ease suffering by acknowledging and strengthening facilitating illness beliefs. Constraining beliefs can also be explored and challenged (Wright & Bell, 2009).

Previous Research About Beliefs and Illness Previous research about beliefs and illness has mostly assumed an individual perspective (Darr, Astin, & Atkin, 2008; dela Cruz & Galang, 2008; Hjelm, Berntorp, & Apelqvist, 2012; Järemo & Arman, 2011). From such a perspective, beliefs about the etiology of illness often became a complex combination of causes where psychological factors dominate (Järemo & Arman, 2011). Individual lifestyle changes were also associated with beliefs about etiology of an illness. For example, individuals who held beliefs that fate was a cause of illness were found to be less motivated to make lifestyle changes (Darr et al., 2008; dela Cruz & Galang, 2008). Another study showed that if people with illness are unaware of their external resources, such as help and support from others, constraining beliefs of being a “victim” of circumstances might arise (Järemo & Arman, 2011). Another study with a family perspective in a palliative context showed that there are both individual and shared beliefs within a family. Some beliefs were contrasting and mutually not exclusive; paradoxically, they could occur at the same time. By oscillating between contrasting beliefs, family members handled challenges in daily life (James, Andershed, & Ternestedt, 2007). However, there were a number of studies that mention the importance of family members’ illness perceptions

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and that they influenced the illness outcomes and family function (Darr et al., 2008; dela Cruz & Galang, 2008; Rosland, Heisler, & Piette, 2012). When beliefs become important for how individuals and the family as a unit perceive and manage illness, research with a Family Systems Nursing (FSN) approach (Benzein, Hagberg, & Saveman, 2008; Wright & Leahey, 2013) can offer new understandings about beliefs in families living with chronic illness. Other studies have found that the IBM constitutes a foundation for family nursing conversations that contribute to family well-being (Limacher & Wright, 2006; Moules, 2009; Robinson, 1998; Thirsk & Moules, 2013; West et al., 2015). In this study, we used the IBM to uncover beliefs within and across families within a research context. Based on the current body of knowledge, there is a need to understand illness beliefs on a family level to be able to develop suitable caring interventions.

Aim The aim of the study was to illuminate illness beliefs in families living with chronic illness.

Method A secondary analysis was conducted using data collected from family research interviews in a previous study for the purpose of illuminating the meaning of lived experience of living as a family in the midst of chronic illness (Årestedt et al., 2014). This study used a FSN approach that views the family as a unit and focuses on interactions between family members throughout the research process (Ganong & Coleman, 2014). A hermeneutic method was used to analyze data based on family research interviews, not clinical interviews where there is a focus on some type of change and/or healing. The analysis was inspired by the hermeneutic philosophy of Gadamer (2004) and followed the methodological procedure for hermeneutic inquiry described by Ödman (2007). In a hermeneutic inquiry, there is a constant moving between the parts and the whole throughout interpretation process, which aims to gain new understandings and meanings (Gadamer, 2004; Ödman, 2007). It is a suitable method to explore phenomena about human experience, and it offers possibilities of reinvention and new ways of viewing the world (McCaffrey, Raffin-Bouchal, & Moules, 2012). In this study, “family” refers to a self-defined group of two or more individuals who are, or are not, bound by blood ties or law, but function in a way that makes them feel they are a family (Whall, 1986). “Chronic illness” is defined as “the irreversible presence, accumulation, or latency of disease

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states or impairments that involve the total human environment for supportive care and self-care, maintenance of function, and prevention of further disability” (Curtin & Lubkin, 1995, pp. 6-7).

Participants A purposive sample of families was recruited. Inclusion criteria were as follows: Swedish-speaking families where an adult family member had lived with chronic somatic illness for more than 2 years and having at least two family members to invite to the interview. Exclusion criteria were as follows: cognitive or speech disorders and persons receiving palliative care at end of life. Participants were recruited through information given by nurses and public advertising at a medical clinic in one hospital and two district health care centers in the south of Sweden. Those interested in participating contacted the first author themselves or via a nurse who mediated the contact. Families were then given verbal and written information about the study. Interviews were subsequently scheduled with those who agreed to participate. The study participants consisted of seven families. Their characteristics are shown in Table 1.

Data Collection Narrative family interviews (Eggenberger & Nelms, 2007) were conducted by the first author between June 2010 and April 2011. Each family was interviewed twice during a period of 2 to 4 weeks. All interviews took place in the participants’ home except one, which took place at the first author’s workplace. The research interviews lasted from 30 to 75 min, and were taperecorded and transcribed verbatim by the first author. The first interview started with an open question: “Can you tell me about your experiences of living as a family with chronic illness?” To facilitate a systemic perspective and co-creation of stories, the answers were followed up with circular and reflective questions (Tomm & Liedén, 2009). Family members were asked to reflect on each other’s stories by using questions such as “What do you think when you hear your father tell us about that?” and “Do you remember the situation your sister just told us about, how was it for you?” Questions intended to obtain rich descriptions, such as “Can you tell me more about that . . . ?” were also used. The transcription from the first interview was read through before the second interview took place and families were asked to clarify and develop certain areas of the phenomenon.

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Årestedt et al. Table 1.  Family Characteristics (n = 7). Family member Family member (relation to (relation to person with Family Person with person with illness and age) illness and age) members illnessa Family 1 Family 2

Family 3 Family 4 Family 5

Family member Family member (relation to (relation to person with person with illness and age) illness and age)

Woman, 50 Husband, 50 years yearsb Man, 50 Mother, 74 years years

Sister-in-law, 48   years   Father, 76 years Man, 50 years, Friend/ personal assistant (took part in the first interview) Wife, 32 yearsb Mother, 57 years  

Man, 32 years Woman, 54 Husband, 57 years yearsb Woman, 44 Husband, 47 years yearsb

Family 6

Woman, 46 Daughter, 19 years yearsb

Family 7

Woman, 80 Husband, 82 years yearsb

  Son, 13 years (took part in the first interview)b Partner not living in the same household as the person with illness, man, 57 years

Daughter, 11 Sister, 38 years years (took (took part in part in the first the second interview)b interview)  



aThe persons with illness were diagnosed with either diabetes, whiplash, stroke, multiple sclerosis, chronic obstructive pulmonary disease, muscular dystrophy, renal failure, or rheumatism. All persons with illness received medical and pharmacological treatment due to illness. bPerson who lives in the same household as the person with illness.

Data Analysis Hermeneutical analysis (Ödman, 2007; Ödman & Kerdeman, 1997) was used to interpret and understand illness beliefs in families living with chronic illness, and data were analyzed on a family level both within and across families. According to Gadamer (2004), new understanding emerges from openness, participation, and dialogue. Through a dialectical process between the revealed experience and the researchers’ pre-understanding, the text can be explored, examined, and re-examined. This process facilitates a “fusion of horizons” between the researchers and the text, which is essential for the

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development of new understanding. The analysis was continuously moving like a hermeneutic spiral between the whole and the parts to achieve a greater understanding (Ödman, 2007). The definition of a belief in the IBM (Wright & Bell, 2009) was used in the analysis as a way to think about and interpret beliefs. First, the interviews were read to obtain an overall understanding of each family’s story. Then, text sections which included possible beliefs in each family and from each family member were marked in the text and summaries were done for each family. The interviews were then read again to validate or invalidate beliefs and discover whether only one or more than one family member expressed the same belief. If more than one person in a family expressed the same belief, the whole interview was read again to explore whether it could be defined as a family belief. A family belief was identified and defined as a belief that was expressed by all participating family members within a family, and it was derived from different examples, occasions, contexts, and times in the family’s story. A family belief was also often expressed by using the word “you,” for example, “you have to fight,” which was an expression of a general truth in the family. In the next step, differences and similarities between beliefs within and across families were examined and thematic patterns were identified (Ayres, Kavanaugh, & Knafl, 2003). Both core beliefs and secondary beliefs were described. When beliefs were identified across families, core beliefs emerged. These were beliefs that were more prominent and dominating for the families’ way of thinking and acting. Additional beliefs or secondary beliefs were then derived from the core beliefs and the text. To confirm a valid interpretation, a reflection on whether the result was a meaningful way to explain data and whether there were no contradictions in data behind the interpretation were done (Ödman, 2007).

Ethical Considerations Ethical approval was obtained from the Regional Ethical Committee (D-nr: 2010/51-31). In accordance with The Declaration of Helsinki (World Medical Association, 2008), participants gave written consent after receiving written and verbal information about the study, including the purpose and procedures, the voluntary nature of participation, and the option to withdraw at any time. Participants were guaranteed confidentiality and secure data storage. Respect for privacy was taken into account in the interview situations by not putting informants under pressure to disclose more than he or she apparently wanted to. The interviewer was also prepared to refer interviewees to professional help if needed.

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Årestedt et al. Table 2. Beliefs. Core beliefs Beliefs about illness

Illness is a part of life Illness is a threat to life

Beliefs about family

The family is important in illness

Beliefs about health care

The encounter with health care is a struggle

Secondary beliefs Illness should not take too much space Illness should not restrict daily life Illness restricts thoughts about the future It is unfair to be affected by illness You have to live a normal life Family constitutes support when someone in the family is ill Family ties are strengthened when someone is ill Communication about illness should be kept within the family You must have someone who speaks for you Health care professionals avoid talking about illness and its consequences Health care professionals should be able to provide answers

Findings The findings describe beliefs in families and the context in which the beliefs appeared. Common beliefs both within families and across families are described. The result includes beliefs in three areas: beliefs about illness, beliefs about family, and beliefs about health care. There are two kinds of intertwined beliefs: core beliefs and secondary beliefs. Core beliefs seem to have a greater importance than secondary beliefs and are viewed as a general truth by the family members. The secondary beliefs are derived from the core beliefs and are more likely to be challenged and changed than the core beliefs (Table 2). Both kinds of beliefs become important for how families choose to handle different situations that result from illness.

Beliefs About Illness Illness is a part of life.  The core belief about illness as a part of life means that families view illness as an integrated and natural part of everyday life. Illness has a place in their lives, but it is not dominating. When illness is viewed as a part of life, family members seem to be more aware of and prepared for new and unexpected situations resulting from illness.

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This core belief is connected with secondary beliefs such as “illness should not take too much space” and “illness should not restrict daily life.” Illness should not take too much space.  When illness is seen as a natural part of life, it is not allowed to take too much space and families strive to minimize its space. Sometimes, the severity of illness fluctuates and families try to live with the changes, but mostly they strive to be in health. This implies that families consciously avoid focusing too much on the illness to promote family function and well-being. One way to avoid that the illness becomes visible can be to avoid talking about it, which can facilitate for the family to be in health and well-being. Even though the family, in periods, allows more space for the illness, they return to focus on well-being as soon as they can. This belief also influences how families choose to handle various situations, for example, can choose to spend time with healthy people and avoid patient associations. One family described their encounter with patient associations in this way: Person with illness: I have never felt so ill as when I went home [from a patient association meeting] and then mother said: I don’t think you have to bother, it’s nothing for you (laughing) and I have not been there . . . Husband: But then we realized that it wasn’t anything for us. (Family 1) It also seemed to be important for families to treat the family member with illness as a healthy individual, without ignoring the ill family member’s experiences of illness. One family member with illness described how she acted so as not to look ill in the eyes of others. By displaying a healthy appearance, she did not need to answer questions about how she felt: Person with illness: Yes, but some mascara, I do not want to go out without it. Sister-in-law: No, that is true . . . Person with illness: So it is important for me that people say: Ah! You do not look ill. Thanks. Sister-in-law: Then you have to be happy. Husband: Mmmm. Person with illness: Because I don’t want that. It is not . . . What if they say: Oh, look at you, don’t you feel well? Then you feel ill. Husband: No, you will probably not feel that great. (Family 1) Illness should not restrict daily life.  When there is an underlying belief that illness is a part of life, families live their lives without allowing illness to restrict daily life. For the individual family member or the family as a whole,

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this can mean performing activities of importance although it is harder for them before, during, and/or after activities. Abstaining from activities is deemed more difficult than handling problems or suffering caused by the activities. Sometimes, it also becomes important to make space for rest after activities, or that some family members can choose to do an activity rather than all of them abstaining from it. This belief permeated one family story and all family members returned to it several times. Despite the fact that the family member with illness had become worse, they had not been limited; instead, they developed ideas about the planning of how different activities could be carried out. They said, Person with illness: If I was to avoid everything that makes me feel a bit worse or something, I mean, I could not even lie in a bed and do nothing, because whatever I do hurts. Wife: So he must choose what he wants to do, but you don’t take part in everything . . . but you do some things. One has to, God, otherwise one becomes crazy. Mother: Otherwise, finally, there is nothing that stimulates you. (Family 3) Illness is a threat to life.  In families where there is a core belief that illness is a threat to life, there is an uncertainty on how to meet and handle illness expressions. Families strive to live as normal as possible and avoid thinking and talking about the illness. When illness expressions appear, they are experienced as frightening and feelings of fear and frustration arises. When families do not talk about the illness, it seems to become difficult for them to meet and understand situations related to illness, and when family members’ needs to talk about the illness differ, there could be an imbalance that decreases wellbeing. This core belief also raised concerns within families about why they were affected by illness and how illness will be developed in the future. This core belief is related to the following secondary beliefs: “illness restricts thoughts about the future,” “it is unfair to be affected by illness,” and “you have to live a normal life.” Illness restricts thoughts about the future.  When families are thinking about illness, there is a concern about the future. This belief affects individual family members and/or the family as a whole by trying to avoid thinking and talking about the future. On one hand, this belief can be constraining in families’ lives when illness expressions appear all the time, but on the other hand, it can be facilitating and help families to be in the present and appreciate things in life. One family talked about how they were thinking about the future:

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Sister-in-law: I think you have learned to enjoy the present too . . . Person with illness: Mmm. Sister-in-law: . . . because it is here and now that counts. Person with illness: Yes, you have to, and appreciate the present, you never know what happens in the future. (Family 1) It is unfair to be affected by illness.  This belief was mostly expressed by family members of the person with illness. It was regarded as unfair that they had been affected by illness and they compared themselves to other families without illness. When families thought it was unfair to be affected by illness, it also became important not only to release and show feelings, for example, frustration, anger, and sadness but also to “bite the bullet” and move on. These thoughts could also make families believe that it was facilitating not to think about how life without illness could have been. One family said, Person with illness: No, I think I have good quality of life, you cannot think; what would I have done if I did not have this [illness]? What would I have done? Husband: No, it is just to hold back then . . . Person with illness: That does not work, but I think I have struck a good balance and I have good quality of life. (Family 4) When families experienced it as unfair to be affected by illness, they had various thoughts about the person with illness, such as he or she being capable to handle the illness expressions. Family members described valuable characteristics, such as patience and not giving up. When the family member with illness became vulnerable and weak, these thoughts were challenged in the family. One family talked about an occasion when the person with illness was at the hospital: Mother: Yes, then it was bad. Then he did not want to live anymore. Then he had lost heart. Father: Yes of course, then he did not want to live any longer and he tore and pulled and wanted to take away all the cords and he did not want to live (crying). Mother: Yes it was surprising, you would never have thought that he could be like that. Person with illness: No. Mother: But he is back again. Person with illness: Yes (thoughtfully). Father: Yes, now he is his usual self again. Yes . . . (Family 2)

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You have to live a normal life.  When illness was considered as a threat to life, there was an ever-present fear that the illness would become too visible, making the person with illness looked upon as different by other people. The family tried to hide illness expressions so that other people would not recognize that the person with illness was different. Sometimes, there were underlying thoughts that having an illness was shameful. Families in which this belief was prominent described how they strived to be normal and hide the illness expressions. They compared themselves with other families without illness and they did not want to be discriminated due to illness. This belief could be seen on various occasions over time, and all family members talked about it. Person with illness: I try to live as normal as possible, even if I’m using a wheelchair I try to live a normal life . . . without having to think so much about being in a wheelchair. But sometimes you really think about it, that you are in a wheelchair, how people will look at you . . . eh . . . but you have to dismiss such thoughts . . . I’m normal. (Family 2) The belief was confirmed when the family talked about the difficulties they had experienced when people in their surrounding had seen the illness expressions, and they felt that those situations were hard for them to handle. One example described going on a trip: Mother: And once I became . . . oh I became so annoyed, we were on the ferry and eh . . ., he [person with illness] didn’t manage the stairs, there was no way . . . and the lift didn’t work. But then [father] said: It doesn’t matter, I will take you over my shoulder! He threw him up on his shoulder and I went behind them, and then there were some young people and they giggled and had so much fun because they thought . . . they thought he was drunk. Ugh, I became very upset. (Family 2)

Beliefs About Family The family is important in illness.  Families believe that illness is a family affair and that learning to live with illness is shared experience within the family. The closest family members constitute a big source of confidence for each other. The importance of family when living with chronic illness permeates families’ stories, both within and across families. There are also secondary beliefs, including that the family supports each other and that family ties are strengthened by illness. Family constitutes support when someone in the family is ill.  When life was constantly changing and new situations arose, it became important for family

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members to be there for each other. This entailed being sensitive and recognizing how other family members felt. It was also about feeling accepted for who you are within the family. Despite what families thought about illness, if it was a part of life or a threat to life, this belief was the foundation for how they lived their lives. Being there for each other when someone is ill was seen as something natural. Family members thought that they were more needed by others when a family member fell ill, especially by the person with illness. This could manifest itself in the form of practical support, spending more time together or moving closer to the person with illness. In addition, the family member with illness constituted a support to other family members, and it became frustrating for the family to accept that illness restricted the options to be supportive. Chronic illness could include altered roles and challenge beliefs about expected roles, for example, the parent–child role. These beliefs could make it difficult to be as supportive as expected. One teenage daughter described the difficulties of having a mother with illness:  You don’t want your mother to be ill, I try to treat her as a normal adult all the time . . . normal but it doesn’t work very well . . . then it becomes . . . sometimes, you recognize that really . . . that she isn’t so healthy. Later in the interview, Partner: Yes, as I told you, it must be terrible to be 14 years old and then suddenly see your mum in a wheelchair and . . . not be able to do anything about it, and suddenly the mother depends on the daughter and not the contrary and [daughter] has to help [person with illness], put her clothes on and things like that, and she still needs help. (Family 6) Family ties are strengthened when someone is ill.  One belief was that family ties are strengthened in connection with illness. More frequent contacts and more time together contributed to strengthened ties. Families had a belief that they showed more respect for each other than other families. Going through difficulties and critical situations due to illness also strengthened their ties. Things that had been taken for granted before were now challenged, making those family members feel closer to each other: Partner: Therefore in general terms when someone in a relationship becomes eh . . . ill, has a disability or something, then you need the other partner more . . . in one way. In that case, we haven’t been unique anyway, but, what can we say . . . yes of course we probably have come closer, come closer to each other in that way. (Family 6)

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Communication about illness should be kept within the family.  Families’ stories about living with chronic illness also included beliefs related to how they talk about illness. It seemed to be important to offer confidence and contribute to well-being, but there were also variations in how they talked about illness. Families expressed various thoughts which formed the basis for the belief that talk about illness should be kept within the family; it was a matter of not wanting to worry or bother other people, and, furthermore it might be good to talk to those who experienced illness close-hand and had a deeper understanding of the illness experience than others. One family said, Husband: There is a lot of talk about medications and a lot of talk about . . . eh . . . such things, but that belongs to family life.Later, the person with illness responds: Person with illness: . . . you can’t offload everything on your friends, how you feel and how it feels . . . but you cannot offload it on them . . . no I don’t think so . . . so my husband gets everything. (Family 7) Family members thought that it was important to be open and honest with each other, and dare to talk to each other about their feelings, both sorrow and happiness. This communication took place between family members who were perceived as the closest, which meant that other family members might not be included. Families thought that if they talked about illness expressions in an open and honest way, the understanding for each other would increase and their well-being would be strengthened. Families said that they thought that people living together in the same household had more illness communication than those who did not live together. Husband: No, sure I’ll take much more . . . Sister-in-law: Mmm . . . Husband: You will . . . Sister-in-law: And I think the one you love, the one you dare to put your foot down to. (Family 1) Families described how different family members’ upbringing affected their way of communicating about difficulties that occurred in life, for example, illness. If a family member was raised in a family who talked a lot about their experiences of various situations, they thought that this would be mirrored in how that family member talks about illness today. Despite the fact that some family members had lived the most of their lives together, they referred their differences in illness communication to their own upbringing:

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Person with illness: Unfortunately, sometimes it is like that, it just pops up but you are different, you dwell on things, dwell and dwell and I’m more like (claps her hands) Bang! Husband: Yes, I’m more . . . where I was brought up, if there were any problems, they were to be talked about until they were completely sorted out. Person with illness: Yes, but, you cannot dwell on something for eternity either. Husband: No, but until it was, like, until it was sorted out. (Family 4)

Beliefs About Health Care The encounter with health care is a struggle.  The encounter with health care was experienced as a struggle. Families insisted on receiving the best and most appropriate treatment. They expected that health care professionals would believe in them and affirm them. Families believed that the health care provided depended on how familiar the patient was with their illness and various treatment options, and also how much he or she sticks up for themselves. You must have someone who speaks for you.  Families described that there must be someone who speaks for you when the family member with illness does not manage to stick up for themselves. Both the person with illness and other family members thought that this was necessary in encounters with health care. Families wanted to be seen and met with sympathy. Speak for yourself was something that the family member with illness did not want to do on his or her own and the participation by family members thereby became important. Health care professionals avoid talking about illness and its consequences. Families expressed a belief that health care professionals avoid talking about illness and its consequences. On several occasions, the family member with illness wanted explanations from health care professionals, for example, about the cause of their illness and the given treatment. There was a wish to be more fully informed and family members believed health care professionals sometimes withheld important information. Families believed they had to be well prepared to fight their case. Father: I want to have a dig at the doctors, because they know what illness it is and then they should make it clear how to deal with it. Because I thought that he should exercise and exercise, so he had to go up and

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down the stairs so that he would train his muscles. But then, later, the doctor told us that you shouldn’t exercise too much because you weaken the muscles, they could have told us that from the beginning . . . because it’s important (starts crying). (Family 2) Health care professionals should be able to provide answers.  There was also a belief that health care should be able to provide answers and families became disappointed and frustrated when this was not the case. Families expected health care professionals to be the experts and that they should have suggestions and offer appropriate treatments: Husband: The first picture you get is: yes, what medical treatment do you want? Then you want to say, but for goodness sake, you are the specialists, tell us, what treatment should we receive? Person with illness: It was a bit strange at first, when the health care professionals asked: What medical treatment do you want? Husband: Yes. Person with illness: What a question, how will I know? Husband: No, but . . . Daughter: Then you start searching on the Internet and so on . . . Husband: No, you have to decide . . . and then . . . . you couldn’t stand it and then we thought . . . and then it went quiet . . . and we didn’t like it and we contacted . . . Person with illness: Another hospital. (Family 5)

Discussion This study revealed important knowledge about family beliefs when living with chronic illness. This has not been presented before as previous studies mainly focus on beliefs at an individual level. The findings showed two kinds of intertwined beliefs: core beliefs and secondary beliefs. These should not be regarded as an exhaustive description of beliefs, but a part of existing possible beliefs in families living with chronic illness. Core beliefs appeared to be more profound and to have a greater importance on family functioning than secondary beliefs. The secondary beliefs are derived or could be considered as subsets of the core beliefs and are more likely to be challenged, changed and/or modified than core beliefs. This is similar to Wright and Bell’s (2009) conceptualization that core beliefs are more difficult to change or modify than other beliefs because they are deeply rooted and often constitute the basis for an individual’s identity. According to Kelly (1963), who uses the term personal constructs instead of beliefs, the constructs can be both peripheral and core constructs and are hierarchically connected.

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The families in this study described how they were acting, feeling, and thinking in different situations when their core beliefs guided them, and they expressed that these were taken for granted and often out of their awareness. This is also similar to Wright and Bell (2009), who state that core beliefs influence family functioning and are vital for how families cope with illness and suffering. Core beliefs within families are fundamental to family identity and coping strategies (Walsh, 2006; Wright & Bell, 2009). The results also showed that there were shared beliefs within the family based on the family evolving over time and having a shared history. As part of their family evolution, they often develop common beliefs, which is also similar to Wright and Bell (2009), who describe that beliefs are developed in interaction with others over time. However, even if families have beliefs that have developed over a long period of time, beliefs are not static. Families evolve and so do their values and beliefs (Friedman, Bowden, & Jones, 2003). In this study, shared beliefs appeared in the families’ stories. For example, one family member talked about a topic that was then confirmed by other family members and who gave further examples, thus intertwining their stories. This merging of family members’ common values and environment influences how we make our constructs, and sometimes family members can develop the same constructs based on these similar experiences (Kelly, 1963). According to linguistic system theory, it is in our verbal communication that our beliefs become visible. Language creates roles and a social structure for human beings that are also closely related to our actions, and it is through using words that actions obtain meaning in conversations with others (Anderson & Goolishian, 2004). However, even if Wright and Bell (2009) argue that there are beliefs which are shared through interaction in the family, they mean that there is no such thing as family beliefs. Instead, they argue that there are only individual family members’ descriptions of family beliefs. However, we challenge this idea based on our results and from a systemic perspective. We argue that family beliefs may be seen as something more than the sum of individual family members’ beliefs. According to Walsh (2006), belief systems within the family are the core of family functioning and become powerful contributors to resilience. The family’s view, perspective, and beliefs about their illness problems will determine how they will cope with their illness experience. Belief systems serve as a cognitive map guiding decisions and actions and make family life coherent (Rolland, 1998; Walsh, 2006). These family beliefs systems (Rolland, 1998), or family values (Friedman et al., 2003), are a system of beliefs that consciously or unconsciously bind members of a family together in a common culture. Dominant beliefs in a family and its culture will certainly influence how families deal with new and challenging situations.

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The results also included different core beliefs about illness, for example, “illness is a part of life” and “illness is a threat to life.” When illness was viewed as a natural part of life, being aware of and prepared for new situations caused by illness was included. According to Wright and Bell (2009), this can be understood as the family having put illness in its place and have had the possibility to make place for illness in their lives. Walsh (2006) emphasizes the importance of having positive illusions and acknowledging illness not only to experience well-being but also to acknowledge suffering and give voice to concerns. When the belief “illness is a threat to life” was dominating in the family, there was an ongoing uncertainty. Robinson (1998) describes that illness was experienced as intrusive, unpredictable, and dangerous in families in which chronic illness was viewed as a constant threat to life. In this study, there was a secondary belief that “you have to live a normal life” when illness was viewed as a threat to life, and perhaps this belief also included underlying feelings of shame. As mentioned previously, our culture influences our beliefs (Walsh, 2006; Wright & Bell, 2009) and some beliefs are more acceptable in particular cultures than others (Walsh, 2006). In Western culture, illness is not always accepted according to Walsh (2006). Western culture emphasizes personal responsibility and that we are the masters of our fate. If a family has such a belief, feelings of shame can occur when illness emerges. Werkander Harstäde, Roxberg, Andershed, and Brunt (2012) state that feelings of shame also include feeling vulnerable in the situation. The results also indicated that there are behavioral similarities between some secondary beliefs even if there are different underlying core beliefs. For instance, there were similarities in the behavioral expression of the beliefs’ “illness should not take too much space” and “you have to live a normal life.” Families sometimes acted to restrain illness expressions, even if the secondary beliefs were linked to different core beliefs in our analysis. Paterson (2001) offers the idea that restraining illness expressions can be a way to put wellness in the foreground. On the contrary, ignoring disease-related changes can also contribute to illness progression. The results of this study also showed that families have beliefs that illness is a family affair, and therefore it was a matter of course to be there for each other within the family. This was evident in most of the beliefs that emerged from the illness stories recounted by family members. There were also beliefs that illness had strengthened family ties. This is similar to Friedman et al. (2003) who described that shared family beliefs was a part of family identity, which included conceptions about the family’s

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own competence, importance, and durability. This common belief about how illness can strengthen a family can be facilitating. Previous research showed the importance of couples’ ideas about their daily life (Skerrett, 2010) and in connection with illness (Skerrett, 2003). Perhaps results from these studies with couples can also be transferred to larger families. When couples view illness as a common matter, and develop a we-awareness, they have better possibilities to promote healing and enhance resilience (Rohrbaugh, Mehl, Shoham, Reilly, & Ewy, 2008; Skerrett, 2003) and higher levels of well-being (Karademas, Zarogiannos, & Karamvakalis, 2010). There are also other studies that described the relationship between shared illness perceptions and experience, and a higher level of well-being (Trief et al., 2003; Yorgason et al., 2010). When couples face illness together, both the ill person and the partner have to handle feelings of self-loss and other-loss. It is rather unlikely that both partners have the same experience at the same time, and therefore it is important that nurses are aware of this and provide support for shared understanding of each other’s experience (Weingarten, 2013). Families in this study also held beliefs that encounters with health care professionals was an ongoing struggle. Family members believed that they had to fight to receive information and appropriate treatment. In this process, they depended on each other. This is similar to Skär and Söderberg (2012), who described that patients discussed their complaints about health care professional encounters with relatives, but they did not find any solutions to the problem. Conversely, good encounters within health care facilitate the perceptions of good quality care. Families in the present study also had beliefs and expectations of receiving answers from health care professionals, and when their questions were not answered they became frustrated. This has also been described in other studies (Robinson, 1998; Söderberg, Olsson, & Skär, 2012), and frustration sometimes increased the power of illness (Robinson, 1998). It is not only family members who have beliefs about the encounter, but health care professionals also have beliefs about the family, which impacts their relationship with the family and ultimately their clinical practice (Wright & Bell, 2009). According to Friedman and colleagues (2003), different beliefs between the family and health care professionals can result in divergent goals, unclear communication, and interactional problems.

Methodological Considerations In this study, a secondary analysis was conducted on the research interview transcripts with families living with chronic illness gathered in another study

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(Årestedt et al., 2014). This was considered relevant as beliefs, stories, and illness are intertwined, and it is within stories that beliefs are embedded (Wright & Bell, 2009). However, it should be emphasized that we cannot reveal all beliefs in the family, and this should be kept in mind when interpreting the result. This result is one way to understand illness beliefs in families living with chronic illness, but even if the result is contextually bound, it may be transferrable to other families. Transferability is enhanced by the thorough description of the families. In addition, the possibility to uncover beliefs on a family level was facilitated by the use of the IBM as a theoretical frame and the definition and characteristics of what constitutes a belief. We find this model to support the systemic approach of understanding family beliefs when living with chronic illness. Collecting data on a family level increases knowledge about family processes (Eggenberger et al., 2011; Eggenberger & Nelms, 2007), and it also serves the purpose to stimulate participants to co-create the family’s illness story and increase opportunities for illuminating illness beliefs. This is also a way to pay attention to the interaction between family members. In this study, repeated research interviews were conducted to create room for interaction between family members and between the family and the interviewer (Eggenberger & Nelms, 2007). Repeated interviews gave the opportunity to follow up and deepen certain areas, which made it possible to obtain data richness. In the interview situation, families spoke openly and were willing to share their experiences with each other, even if their stories included new thoughts that had never been discussed within the family. Participating in family interviews can be a beneficial learning experience for the family as they become more aware of each other’s concerns. One limitation, however, could be if family members are not able or willing to be open and share their experiences with each other (Eggenberger & Nelms, 2007). To strengthen credibility, the interpretations were discussed among the co-authors and other researchers (Ahlström, Skärsäter, & Danielson, 2010; Ericson-Lidman & Strandberg, 2009; Gustafsson & Strandberg, 2009). Interpretations were continuously moving between the whole and the parts to gain new understandings (Gadamer, 2004). According to Ayres et al. (2003), analysis across families may contribute to the identification of themes and how they are related to each other, whereas analysis within each family makes it possible to only describe the illness beliefs in their context. Throughout the process, efforts were made by the authors to stay as openminded as possible and continuously reflected to be aware of and expand their pre-understanding as a useful part of the interpretation (Ödman, 2007; Ödman & Kerdeman, 1997).

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Relevance of the Findings for Clinical Practice With Families Living with chronic illness is a challenging, ongoing, and shifting process for families, and nurses have to be aware of the evolving and transforming illness beliefs within the family so that they can become supportive and contribute to family well-being. Illness beliefs in families living with chronic illness can be revealed within their illness stories during research and clinical interviews. We have uncovered shared beliefs within the family in their co-created illness narratives. Therefore, we confidently offer the idea that the IBM can be used to uncover not only individual beliefs but also family beliefs. Considering that beliefs are unique and individual to each family, it is hard to offer general implications for practice, but using the IBM (Wright & Bell, 2009) is an appropriate way to highlight beliefs within families. Nurses have to invite and make space to families to tell their stories, but also to let family members reflect upon each other’s illness stories. Then beliefs can be shared and altered and nurses can support families to consider new possibilities and pay attention to resources within the family. It also seems to be important for nurses to be aware that different beliefs can bring about similar actions. This awareness can strengthen the nurse–family relationship, and it is important that the nurse has openness to each family’s unique illness story.

Conclusion This study revealed some common family beliefs about illness, families, and health care when living with chronic illness in the family. These family beliefs add a greater understanding for how families deal with their daily life in the midst of chronic illness. In addition, the uncovered family beliefs are an important contribution to nursing care to develop therapeutic interventions in collaboration with these families. This study also shows that the IBM in addition to being a useful model for therapeutic interventions also is a suitable tool for research. Even though the analyses were inductive, the definition of beliefs in the IBM model guided our mission to detect not only individual beliefs but also family beliefs. Acknowledgments We are grateful to all of the families who participated in the study. We are also grateful to Dr. Lorraine Wright for her helpful critique of this manuscript, to Linnaeus University for funding the study, and to Sofia McGarvey who revised the language.

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Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: We are grateful to Linnaeus University for funding the study.

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Author Biographies Liselott Årestedt, RN, MSc, is currently a doctoral student in the Department of Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University in Kalmar, Sweden. Her clinical and research interests focus on Family Systems Nursing and families who are living with chronic illness. Her recent publications include “Living as a Family in the Midst of Chronic Illness” in Scandinavian Journal of Caring Sciences (2014, with C. Persson and E. Benzein). Eva Benzein, RNT, PhD, is a professor in the Department of Health and Caring Sciences, Faculty of Health and Life Sciences, and director of the newly created Center for Collaborative Palliative Care, Linnaeus University in Kalmar, Sweden. Her clinical and research interests focus on supporting families’ health and well-being

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in all contexts and implementation of collaborative palliative care in clinical settings. Her recent publications include “Preparedness to Care for Victims of Violence and Their Families in Emergency Departments” in Emergency Medicine Journal (2013, with J. Rahmqvist Linnarsson, K. Årestedt and C. Erlingsson), “Effects of a Support Group Programme for Family Members of Patients With Life-Threatening Illness During Ongoing Palliative Care” in Palliative Medicine (2013, with A. Henriksson, K. Årestedt, B.-M. Ternestedt, and B. Andershed), and “Family Members’ Caregiving Situation in Palliative Home Care When Sitting Service Is Received: The Understanding of Multiple Realities” in Palliative and Supportive Care (2013, with B. Wallerstedt and B. Andershed). Carina Persson, RPT, PhD, is a senior lecturer in the Department of Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University in Kalmar, Sweden. Her clinical and research interests include Family Systems Nursing and palliative care. She has a special interest in hermeneutics and development of collaborative care. Her recent publications include “Family Health Conversations: How Do They Support Health?” in Nursing Research and Practice (2014, with E. Benzein), “‘You Put It All Together’—Families’ Evaluation of Participating in Family Health Conversations” in Scandinavian Journal of Caring Sciences (2014, with E. Benzein and C. Olin), and “Examining family responses to Family Systems Nursing interventions: An integrative review” in Journal of Family Nursing (2014, with U. Östlund).

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Families living with chronic illness: beliefs about illness, family, and health care.

Beliefs can be described as the lenses through which we view the world. With emerging illness, beliefs about the illness experience become important f...
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