The Theory of Health-Related Family Quality of Life Part 1: Applicability for Understanding Families Coping with Breast Cancer-Related Lymphedema
By: M. Elise Radina, PhD, CFLE
Miami University, Oxford, OH
A patient’s illness or chronic condition is not something that occurs in isolation or removed from the social and interpersonal relationships with those around her. Rather, experiencing the illness or chronic condition goes beyond the patient and can affect family members and their relationships with one another.1 Thus, understanding how families function in the context of illness and/or chronic conditions is important, as doing so has implications for family therapists, family life educators, physical therapists, nurses, and other helping professionals. A review of relevant theoretical and empirical publications revealed that there is a need for an approach that combines the concepts of health-related quality of life for the patient with family quality of life more broadly. Exploring family quality of life in the context of illnesses and/or chronic conditions is essential, as it can be affected both for the better and for the worse.2,3 Thus, this article provides a brief overview of a newly developed theory of health-related family quality of life (HR-FQoL)4 and offers possible applications for families coping with breast cancer -related lymphedema (LE).
THEORY OF HEALTH-RELATED FAMILY QUALITY OF LIFE
The theory of HR-FQoL focuses on individual family members’ relationships with one another and on individual perceptions of health-related family quality of life for the entire family unit. Specifically, what is of interest is not just one family member’s own relationships with other family members, but his or her experience of family relationships in general and as a whole. In general, there has been little research about family quality of life. Meanwhile, there has also been a great deal of research conducted that revolves around how to capture what health-related quality of life means for the individual patient.5-9 With a few notable exceptions, research on individual health-related quality of life has largely marginalized family life.10,11 By integrating research on family quality of life and individual health-related quality of life the theory of HR-FQoL places a spotlight on family life. Below, the assumptions that guide the theory of HR-FQoL are presented with specific applications to breast cancer-related LE.
Assumption 1: When a family member is diagnosed with breast cancer-related LE the entire family is affected. The theory of HR-FQoL places value not only on the LE patient who lives in the family context, but also on experiences of the patient’s family members. More specifically, the patient is not the only person affected by breast cancer-related LE. That is, all family members can and do demonstrate mutual influence on one another simply because they are part of a family. Each individual family member’s reaction to, or behavior with respect to, LE affects other members of the system and the system as a whole. For example, a young child responds with fear or confusion about his mother’s LE. How the family responds is critical. If the child is shamed for his reaction or made to feel bad about it, the entire family or specific family relationships may be negatively impacted. This may lead to a poor sense of HR-FQoL. In this case, family members may benefit from interventions regarding: 1) educating families about how to help young children understand LE in developmentally appropriate ways, 2) helping patients address and respond to their expectations about family members’ reaction and behaviors, and/or 3) allowing family members the opportunity to learn about and reflect on their own LE-related experiences in safe and supportive ways.
Assumption 2: Families comprise multiple actors (ie, members) who interact on the basis of established patterns of functioning that are governed by rules that can be both explicit and implicit. Each family member has the power either to act or to not act.12 The theory of HR-FQoL focuses on these multiple actors. At the same time, families are governed by rules (explicit and implicit), or established patterns of functioning.13 These patterns of functioning can ensure that family members know what to expect from one another, which may prove especially helpful during the acute phase of diagnosis and treatment and during the adjustment to coping with breast cancer-related LE. For example, when faced with family challenges in the past, family members and the family as a whole responded positively and worked together to address the challenge. This then establishes a sense within the family that coping with challenge in a positive and productive manner is expected. Thus, when there is a diagnosis of breast cancer-related LE, the family can rely on these established patterns as a way of coping. In general, whether established patterns are productive or not, families may benefit from psycho-educational interventions that help them to become aware of what their “normal” is and how to draw on its strengths or make implicit rules explicit. Being able to cope with family challenge of any kind can lead to better health-related family quality of life outcomes.
Assumption 3: New or revised patterns of functioning can result when the family encounters a stressor (eg, illness). To successfully cope with breast cancer-related LE, families may need to revise or replace the patterns of functioning that they had established before the onset of LE. The theory’s main focus is on the illness as a source of stress for the family, as well as on how families must respond to the stressor in order to move forward. This has implications for how family members perceive the family’s ability to cope over both the short and the long terms, which could potentially influence their perceptions of HR-FQoL. Therefore, if a family has faced challenges in the past that were not addressed productively or positively, they may need help and guidance from helping professionals (eg, family life educators, family therapists, nurses) in order to examine old patterns of family functioning and develop new ones. Such intervention may be necessary as changing old habits can be difficult. Developing new ways to address the challenges associated with LE may lead to better HR-FQoL outcomes.
Assumption 4: The introduction of a stressor (eg, breast cancer-related LE) allows for established patterns of family functioning to become more apparent when they otherwise might not be. Cancer can have the effect of helping families to become more aware of their established patterns of functioning.14 Thus, stressors (eg, breast cancer-related LE) can create situations in which family members and family units may become more aware of what helps them function the way they do. This creates an ideal time or place for helping professionals to offer interventions that explicitly explore family functioning and allow families to reflect. Such interventions have potential to influence HR-FQoL as patterns of functioning that are not working can be examined and revised or replaced with new ones.
Assumption 5: Quality of family life is subjective and situation dependent. Both perception and circumstance are important for understanding health-related family quality of life. That is, how family members and families as collections of individuals create meaning or perceive a situation (eg, breast cancer-related LE) or event can have a major influence on their perceptions of the quality of their family life. In other words, if a family considers the breast cancer-related LE to be catastrophic, this may have a negative influence on family quality of life, such that family members may view family quality of life as irrevocably damaged. Thus, the theory of HR-FQoL includes attention to not only family functioning and stressors, but also to how multiple members perceive both of those. Essentially, every family is different and every case of breast cancer-related LE has its own unique characteristics. Thus, helping professionals must be aware of the fact that one intervention may work for one family or situation and not another. Developing interventions that are responsive to the specific needs of individual families may help to improve positive outcomes for HR-FQoL.
The presentation of the theory of HR-FQoL offered here is intended as a jumping-off point for further investigation. Researchers who investigate issues related to families and health may find this theory a useful one for focusing attention on multiple family perspectives. At the same time, the theory of HR-FQoL draws from various theoretical and empirical literatures in such a way that it combines two previously independent areas of study (ie, family quality of life and health-related quality of life), thus allowing researchers to explore issues of health and illness in families in potentially more useful ways than has been possible in the past. At the same time, there is great potential for theory-based, family-level interventions that utilize the theory of HR-FQoL. The suggestions offered herein are just that, suggestions. Helping professionals who work with LE patients are encouraged to consider these theoretical assumptions and suggestions for practice. Feedback and/or additional suggestions are welcome.
Part 1 of this application of theory to research and practice is reprinted with permission from the Oncology Nursing Society’s Lymphedema Management special interest group newsletter (link not yet available). Part 2 of this application of theory to research and practice, which addresses the specific theoretical concepts of the theory of HR-FQoL, can be found in the Oncology Nursing Society’s Lymphedema Management special interest group newsletter (link not yet available). The principles here are focused on research based on breast cancer-related lymphedema.
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radiname [at] MiamiOH.edu