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Reintegration within families in the context of chronic illness: a family health promoting process

2011; Wiley; Volume: 3; Issue: 3 Linguagem: Inglês

10.1111/j.1752-9824.2011.01101.x

1752-9824

Sandra K. Eggenberger, Sonja J. Meiers, Norma Krumwiede, Mary Bliesmer, Patricia Earle,

Childhood Cancer Survivors' Quality of Life

Journal of Nursing and Healthcare of Chronic IllnessVolume 3, Issue 3 p. 283-292 ORIGINAL ARTICLEFree Access Reintegration within families in the context of chronic illness: a family health promoting process Sandra K Eggenberger PhD, RN, Sandra K Eggenberger PhD, RNSearch for more papers by this authorSonja J Meiers PhD, RN, Sonja J Meiers PhD, RNSearch for more papers by this authorNorma Krumwiede EdD, RN, Norma Krumwiede EdD, RNSearch for more papers by this authorMary Bliesmer DNSc, RN, Mary Bliesmer DNSc, RNSearch for more papers by this authorPatricia Earle PhD, RN, Patricia Earle PhD, RNSearch for more papers by this author Sandra K Eggenberger PhD, RN, Sandra K Eggenberger PhD, RNSearch for more papers by this authorSonja J Meiers PhD, RN, Sonja J Meiers PhD, RNSearch for more papers by this authorNorma Krumwiede EdD, RN, Norma Krumwiede EdD, RNSearch for more papers by this authorMary Bliesmer DNSc, RN, Mary Bliesmer DNSc, RNSearch for more papers by this authorPatricia Earle PhD, RN, Patricia Earle PhD, RNSearch for more papers by this author First published: 15 August 2011 https://doi.org/10.1111/j.1752-9824.2011.01101.xCitations: 19 Sandra K EggenbergerMinnesota State University, MankatoSchool of Nursing360 Wissink HallMankato, MN 56001, USATelephone: +50 7 389 68 21E-mail: sandra.eggenberger@mnsu.edu AboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat Abstract eggenberger sk, meiers sj, krumwiede n, bliesmer m & earle p (2011) Journal of Nursing and Healthcare of Chronic Illness3, 283–292Reintegration within families in the context of chronic illness: a family health promoting process Aim. To describe the processes families use to manage family life in the context of a chronic illness and build theory that clarifies elements of the family processes. Background. Illness has been described as a family affair triggering families to shift their individual and family patterns as they attempt to manage ongoing life with a chronic illness. Family processes are central to the tasks and goals of a family living with a chronic illness. One in two families will experience a chronic illness in the next decade, hence it is important that research focus on understanding family processes that can influence health of the member with an illness and family health. Design. Grounded theory methodology was used for this study. Nine families participated with 46 participant family members interviewed aged between 6–75 years. Families included members with varied chronic illnesses. Semi-structured, audiotaped interviews with group analysis methods focused on family level data. Data were collected in 2005. Results. The central phenomenon was identified as an ongoing process of reintegration within families in the context of chronic illness. Recognising the vulnerability and reality of chronic illness prompts families to initiate reintegration within a context of uncertainty presented by the specific illness and its ongoing management. As a result of the caring strategies chosen by families, a pattern of engagement with the chronic illness was developed that focused on ongoing connecting, pondering, relating and struggling. Conclusions. A model of reintegration provides new understandings of ongoing family processes of a chronic illness. Supporting the evolving family as they engage with the chronic illness through processes of connecting, pondering relating, and struggling promotes family health. Relevance to clinical practice. Findings provide direction for health professionals planning family interventions to support family caring strategies and family processes as families engage with the chronic illness. Introduction Illness has been described as a family affair (Denham 2003, Wright & Bell 2009) with chronic illness triggering families to shift their individual and family patterns as they attempt to manage ongoing life with a chronic illness. Families living with a member who has a chronic illness simultaneously manage limitations and losses while trying to see hope and possibilities (Chesla 2005). Multiple losses at the time of diagnosis and exacerbations, progression of symptoms, and deterioration in the illness trajectory contribute to a complex experience often filled with emotional distress, chronic sorrow, vulnerability, and family suffering (Ahlstrom 2007, Chesla 2005, Stodberg et al. 2007). Research has identified that family member perceptions of illness events (Boss 2002, Wright & Bell 2009) are important elements in a family's interpretation and management of the illness experience. In addition, unique family typologies and family management styles have been identified in families managing chronic illness (Knafl et al. 1996). However, the processes used by a family living through the inevitable transitions of chronic illness are not fully known (Clarke-Steffen 1993, Knafl & Gilliss 2002, Khalili 2007). Developing nursing strategies that comprehensively target support for the family living with chronic illness requires knowledge of these processes. The specific aims of this study with families experiencing chronic illness follow: (1) to describe the processes families use to manage family life in the context of a chronic illness, and (2) to build theory that clarifies the elements of the family processes and relationships among these elements. This knowledge will provide rationale and guidance for nursing actions with families during chronic illness (Gillis 1990). Background Family is often defined by its structure, function and processes needed for various family roles and duties (Kaakinen et al. 2010). The United States Census Bureau defines family as two or more people living together who are related by birth, marriage, or adoption (Tillman & Nam 2008). Wright and Bell (2009) identify the family as a group of individuals who are bound by strong emotional ties, a sense of belonging, and a passion for being involved in one another's lives. Perhaps neither of these definitions is sufficiently inclusive. Changing family structures, cultural beliefs, geographic customs and chronological events are all factors that influence the definition of family. For the purpose of this study, a family with a chronic illness is a group of persons self-defining as family who are managing and living with a chronic illness. Family processes Whether a family is labelled as 'healthy', 'dysfunctional', or 'normal', family processes are a significant aspect of family life that influence the health of an individual family member and family health (Weihs et al. 2002). Family processes are the multiple, ongoing interactions between family members through which they accomplish their tasks (Denham 2003). Chronic illness may influence family processes, thereby impacting health outcomes of the chronically ill and their families. Chronic illness definition and incidence The World Health Organization (2010) identifies chronic illness as a major cause of death and disability worldwide. One of two US citizens has a chronic health condition with an expected increased incidence and approximately 157 million predicted to experience a chronic illness by 2020 (John Hopkins University 2004). Chronic illness is often defined as any physical or mental condition that demands living with disease trajectories over time and responses that may shape the disease course (Hyman & Corbin 2001). Chronic illness affects the lives of family members on physical, psychological and social levels. While health care professionals often remain focused on the person with the chronic illness, a family member's illness also is likely to influence family health (Weihs et al. 2002, Fisher 2006). Yet, the family often remains the key provider of care and support for the chronically ill person. Knowledge of family processes is needed to develop nursing practice and models that support the health and improve health outcomes of both the individual member with the chronic disease and the family. Previous work that enhanced theoretical sensitivity Knowledge development with the intention of understanding the health experiences of families in rural settings has been the focus of the investigators in this study for over a decade. Prior work has sensitised the team to the family health experience that may have influenced assumptions made within the current study (Strauss & Corbin 1998). Previous research conducted with healthy families was guided by grounded theory methodology and described the processes used by the rural family dealing with inevitable health transitions of normal family life (Meiers et al. 2009). Based on the processes of the health experience described by these nine families, the researchers hypothesised that at times of transition, families engage in enduring acts of balancing because the core family identity is challenged. Aim To describe the processes families use to manage family life in the context of a chronic illness and build theory that clarifies elements of the family processes. Design Grounded theory methodology was again used for this qualitative study because it is particularly helpful in knowledge development since it focuses on describing the interactive processes prevalent in family construction of health. This research method was originally developed to view the symbolic interactions of human behaviours; subsequently it was used to examine the family processes by scholars in the family social science arena (Strauss & Corbin 1998). Participants Interview transcripts and field note recordings of interviews with nine families managing a chronic illness served as the data for the current study. Forty-six participant family members ranging in age from 6–75 years (mean 34) were interviewed in 2005. Eligible participants were members of families where at least one member had a diagnosed chronic illness. These families lived in a rural community of <50 000. Participants were well educated with 26 out of the 46 having attended college. The mean family income was $69 000 (range $10 000–over $100 000). Chronic illness situations represented were HIV-AIDS, multiple sclerosis, Type I diabetes mellitus, ankylosing spondylitis, lymphoma, chronic obstructive pulmonary disease, and congenital muscular dystrophy manifesting in pulmonary failure and chronic renal failure. Recruitment Participants were recruited through convenience sampling of families living with a chronic illness in the Midwest USA. Six families managing a variety of chronic illnesses initially self-nominated for participation by responding to a regional newspaper advertisement. Following interviews with these six families, the researchers sought a purposeful sample of participants in the rural community who could provide unique perspectives on chronic illness that were not obtained in the original sample. These three families were recruited from the professional network of the researchers. Families were contacted by telephone, informed about the study and initial verbal consent and interview scheduling was completed. Prior to interviews, the researchers ensured informed consent for adults and assent for children between the ages of 9–18. Data collection Prior to conduct of the family interview, demographic information was obtained. Data collection was carried out in conjunction with and guided by data analysis. Audiotaped family group interviews were conducted by teams of two co-investigators in the families' homes and lasted one to two hours with the exception of one family who chose to be interviewed in a health care facility without involvement of the chronically ill child. Data collection ceased when no new properties of the core category were found (Glaser 1992, Strauss & Corbin 1998). Data collection A semi-structured interview was completed, using the following questions as probes: • Tell me about your family living with this chronic illness of ______? • Can you discuss the impact this illness has had on your family? • Describe how your family has managed this illness? • Let's talk about the challenges your family has faced in dealing with this illness? • How would you describe your family's strengths in facing this illness? All audiotaped interviews were transcribed verbatim and entered into a word processing program for audit trail and peer debriefing procedures. Preparation of data, including subject identification, confirmation of verbal accuracy, and presence of pauses or laughter, was completed by two researchers while listening to the tapes. Facial expressions and body movement during the interview were recorded through use of field notes following procedures recommended by Sandelowski (1993). Data analysis Data were analyzed following the process described by Strauss and Corbin (1998) and recorded in Table 1. Table 1. Data analysis process Process Outcome Model element Open coding by individual researcher who reads each transcript Process concepts labelled Dyads review conceptual labels Concept labels validated or revised Complete team reviews labelling done by dyads Assembly of concept labels into process categories Categories examined by complete team Properties of the category and dimensions of the properties identified Potential elements of model determined Similarities and differences between categories identified Determination made regarding static or continuum nature of category Relationships between categories depicted Axial coding by complete team Connections made between categories Graphic model of core category (family reintegration in chronic illness) representation Exemplary quotes of elements of graphic model identified Confirmability of model tested Graphic model revised A core category, the central phenomena around which all other categories were integrated, was identified. This core category recurred frequently in the data, linked the various data, and explained much of the variation in the data. Rigour Rigour was established in this study through measures described by Lincoln and Guba (1985) to ensure transferability, creditability, dependability, and confirmability. Transferability refers to the capacity to transfer the study conclusions to another setting. Use of data exemplars will enhance the possibility that other researchers can judge the appropriateness of transferring the study findings to another setting. Creditability was achieved through researcher triangulation during the interview, analysis and writing phases of the project. Review of the data text by two researchers followed by analysis of the entire team was done to clarify and confirm categories. In addition, conducting all but one of the interviews in the naturalistic setting of the family home enhanced the creditability of the data. Dependability was achieved through use of audiotaped, transcribed verbatim transcripts that were reviewed for accuracy by the researchers. All research team members discussed the core category and reached consensus on a hypothesis statement regarding relationships between categories. Confirmability was achieved through recording the decision-making process and by feedback sessions with a small number of family members. Ethical considerations Following approval of the project by the University Institutional Review Board interviews were conducted in family homes. Adult participants signed consent forms for their participation and also as guardians of their children where applicable; assent forms were signed by children age nine and above prior to interviews. Processes to assure confidentiality and anonymity were implemented. Findings were rendered non-identifiable prior to data analysis and participants are not identified in the reporting of results. Results A process of reintegration within families in the context of chronic illness The central phenomenon or main category that describes the family's process of managing chronic illness in this study is an ongoing process of family reintegration (Fig. 1). Different than adjustment or adaptation to the existing illness, family reintegration is the family's capacity to adapt to reality and make choices within the family's experience of chronic illness. Integration, according to Abate (2002), means to complete by the addition of parts, to combine into a whole, to unify or to unite; the process of becoming an accepted member of a group or community (Abate 2002, Soukhanov 2004). The prefix re means afresh or anew or return to a previous state. The family reintegrates not to some form or pre-existing model but to an integrated system that can manage the chronic illness over time while the family evolves simultaneously with its own identity, values and personality. Throughout the interviews, families described examples of normal family processes implemented for maintenance and growth in the presence of chronic illness and also described times when reintegration processes were not possible. Figure 1Open in figure viewerPowerPoint Reintegration within families in the context of chronic illness. Recognising vulnerability and the reality of chronic illness The situation that prompts families to initiate the process of reintegration is that of recognizing the vulnerability and the reality of chronic illness. A mother describes a new vulnerability caused by the new illness diagnosis, 'Every family is dealt different cards … cards that you don't want and you can't give … back … My vision was so different than what ours is like.' Another family explains the distress of particular times and transitions in a chronic illness, 'Those first years were horrible for us. I wouldn't go through that again.' Altered reality is described by a young daughter who shares her disappointment at her ill mother not being involved with her daily life, 'I wish that she wouldn't have medical problems so she could do more stuff … like swim … and … I wish she could go to Bible School with me sometimes … It's a lifetime thing. It just makes me sad because she can't do a lot of things with me.' Families re-integrated to a family reality that may differ from what their family vision would have suggested. The reality of managing the chronic illness prompts the families to explicitly or implicitly begin new ways of thinking, acting, and relating. Context of uncertainty The process of reintegration occurs within a context of uncertainty of chronic illness presented by the specific illness and its ongoing management. All families related the initial process of adjusting to the diagnosis and its implications for the family. A husband shares his feelings regarding the ever-present wearing nature of the chronic illness and how to fits it into family life, '… it's the constancy of it all, just going from one thing to another … it really wears you down.' Another father describes the sudden nature of the uncertainty that can occur, 'But so many things happened so quick that we just weren't surprised when something else bad happened for awhile—it was like we expected it. Everybody did—and it happened so quick that everybody adjusted.' A husband relates the constancy of uncertainty, 'Nothing has been the same ever since it's just gone on; it's been one catastrophe after another. It's just changed our lives. It's the constancy of it all, just going from one thing to another.' Families also described the multiple unknowns of managing illness symptoms and the predictable unpredictability of chronic illness. Parents describe living with a child's chronic illness, with the mother stating 'My child has an intercom and I hear every breath he takes' and the father completing the interchange, 'It's when he doesn't take a breath that you wake up instantly.' Nurses and physicians seem to have a role in the influence of uncertainty upon the family. When the nurse includes the family in the planning of care and provides needed information for decision-making, uncertainty seems decreased. A mother on renal dialysis describes the positive assistance of a clinical nurse specialist, 'She's just caring, she cares about what really happens to you … she is not afraid to page the doctor … she is not afraid to do something. She is good with the family. She explains everything.' Conversely, when the family member is excluded from a connection with the physician and from accompanying the ill family member, feelings of uncertainty about the illness experience are magnified. A husband who was excluded from his wife's multiple sclerosis diagnosis experience shares the following description of an experience of exclusion: Husband: I'll never forgive the doctor. I wanted to go in with her when he was going to diagnose what she had and the nurse said 'He doesn't [sic] want you in there.Wife: Yeah, and he told me-in fact he didn't speak to me directly-he was recording in his little recorder and he was saying about the examination and diagnosis-multiple sclerosis. And I'm sitting there thinking, 'Oh, my!'Husband: Isn't that cruel? I'm sitting outside doing a slow burn anyway because the nurse said he didn't want me in there. Caring strategies Once families begin to understand the impact of the chronic illness on their present and future, they choose to use intentional caring strategies to keep the illness in its place and care for the family member with chronic illness. 'There isn't anything that I am going to do that is going to change anything about it … it's not a problem with a solution that I have … so … there is nothing that I can do about it except … worry about it … and I have other things that I have to worry about … so I can kind of compartmentalize it …' The family provides that enduring continuity of care through protecting, monitoring, and planning. Families describe an ongoing and persistent advocacy for their family members with the chronic illness. A husband describes trying to protect his wife from other family issues of concern, 'Trying to protect her from anything is really stupid, because women just have a way of knowing what's going on (laughter) before it goes on (laughter). So we just decided, "… Just tell her because she knows already."' Another family describes how members monitor the diabetes, 'We get on her to make sure she eats. We ask her if she's eaten yet, and she says no, so we say 'you're eating – NOW! She's pretty good about it.' Families also described the future-orientation and protection-orientation of their illness management. For instance, parents described planning for the ultimate dying and death of their son with HIV-AIDS inclusive of incorporating the son's partner in the process. The partner states, 'Being here is a very secure place for [him] … and I promised I'd bring him back if he wanted to die here … and I promised his parents, too … that's what they all want … we still have time.' A family describes coordinating child care during a period of surgical intervention. The mother describes this situation, 'My daughter was shipped off to my brother's house in Idaho, because I couldn't take care of her … because my parents and husband were working, too.' Engagement with the chronic illness As a result of the caring strategies used by families to reintegrate, a pattern of engagement with the chronic illness develops. Families engage with the chronic illness intentionally in most cases and by default in some. Engagement means connecting, pondering, relating and struggling with the chronic illness experience. Different from the caring strategies which are generally used to assist the individual with management of the chronic illness, engagement occurs at the family level to enhance current and future family life. Connecting Connecting takes the form of the family intentionally spending time together so that memories can be made in anticipation of the progression of a chronic illness. A wife of young children describes planning family activities to create memories in view of progressing symptoms of multiple sclerosis, 'I mean if there should ever come a time, and hopefully not where Jon has a hard time walking … all these vacation memories with their dad, when he is walking, I just think are important … really important …' A mother of young children says, 'We don't want to scare them … they are young kids. So we do what we can as a family now.' Another chronically ill father stated, 'I coached my son's soccer team and thought, I don't know if I can do it in the future so I better do it now.' Pondering Family pondering means that families question the meaning of the illness, the purpose of the illness, and the place of chronic illness in family life. Families gain a sense of preparedness as they claim ownership of this process of reintegration to engage simultaneously in family life and with the chronic illness. 'I think health is something that some people take for granted and … we know we are dealing with MS … we don't know what is going to bring in the future, we don't know what it's going to do …' Families act to maintain the health of the family unit while they manage a family member living with a chronic illness. Throughout the process of reintegration families make efforts to keep the illness in its place yet blend the illness into the evolving family. Relating Families are obligated to maintain relationships with their immediate and extended family members, even when differing perceptions and coping strategies are used. A married couple with a chronically ill child describes their unique responses while emphasising a need to continue interactions. 'He [referring to husband] thinks I worry too much. At times I want to talk about it more than he does, but I know I have to wait until he is ready and then I can explain my concerns.' All families emphasise their efforts to develop trusting relationships with health care providers. 'It has been work to find a competent practitioner who cares about listening to us.' Relating to a social network of neighbours, church and social groups often provides the additional support a family needed during chronic illness. 'The church and neighbors have been right there with us from the beginning.' Struggling Struggling entails ongoing engagement with illness management that must be endured within the trajectory of normal family life. Families describe the ongoing struggling of caring for their technologically dependent child while valuing their marital partnership. 'It's been a long ordeal. I get in trouble when I look into the future. He's got a lifetime of machinery. It helps to have a partner to deal with this. He would try to give me a night to sleep, but I would train myself not to sleep soundly because my husband needed to work and make money.' Discussion The study's overall goal was to build knowledge that will provide rationale and guidance for nursing actions with families living with a chronic illness. It is important for health care providers to develop models of care and plan a continuum of care that is based on an understanding that families experience an ongoing process of family reintegration within a context of uncertainty of illness. Findings suggest nurses should guide families as they learn and implement caring strategies and also support and assist families to engage with the chronic illness to promote health of the evolving family. Family reintegration is prompted when members of the family recognise the vulnerability imposed on family life by the reality of a chronic illness of one of its members. Intentional caring strategies (planning, monitoring and protecting) used by the family during the reintegration process can be used by the family-at-large to assist the family member living with a chronic illness condition. Throughout the process of reintegration, families make sophisticated efforts to keep the illness in its place while also blending the illness into the evolving family. Consequently a dynamic perception is constructed that involves: (1) a continuing expectation of changing family relationships, (2) a commitment to enhancing family life in the presence of chronic illness, and (3) an ongoing and persistent advocacy for the family member with the chronic illness. Significant elements of the family reintegration process that were identified in this study give direction for nurses planning comprehensive family intervention. The fact that this study included family members with a broad range of illnesses enhances knowledge in the area of family response to the general experience of chronic illness. This non-disease specific focus contributes to the understanding of a basic process in family nursing, that of reintegration within families in the context of chronic illness. In addition, the elements of the process provide some specific areas of potential target for nursing actions. Namely, it may be possible to create nursing approaches to decrease the effect of family vulnerability and family uncertainty, as well as to support planning, monitoring and protecting. Finally, nurses are able to assist families in maintaining their integrity through supporting their connections, pondering, struggling and relating. Prior discussions of vulnerability with disease and injury have focused on the individual experiencing the chronic illness (Ahlstrom 2007) or the spouse (Kurz 2002) while findings from these families suggest family vulnerability may occur as a family recognises