A systemic view of family health

Abstract

This issue is based on the premise that examining health from a systems point of view provides a different lens which leads to different assumptions about health, health care and ultimately the responsibility of society in acknowledging the place of the family as a care recipient. The papers in this issue take us on the journey to try and understand family experience in a caring capacity from this perspective where the interrelationships within the family, between the family and professional carers, and macro system influences within the healthcare system itself provide the context for illness and process of health care. This full systems approach provides a conceptual platform to examine these excellent papers, all of which relate to family caring across the life span. Both of us have long had a commitment to the systemic study of family life in health care, both separately and in later years collaboratively. It is this passion for fostering more research in family health from this point of view that was the impetus for this issue. As we have moved through the past two decades, our experience in research and teaching has organized our thinking about the place of families in the caring sciences, and the rich potential for a systems focus to influence complex health problems and change practice. Our commitment, the work of our students and the commitment of many scholars internationally reflects how this theoretical foundation has expanded. The last special issue on family caring in this journal 5 years ago explored then current knowledge development showing how diverse studies of common healthcare issues demonstrated a progression from the contextual to the systemic point of view (1). That issue represented the current direction of knowledge development at that time, particularly in maternal–child health. Our wish for the future at that time was for ‘…studies in family health care research that will continue to expand to include families in later life transitions… in long term chronic illness and… in the end of life’ (p. 95). Therefore, our call for papers this time requested a family systems perspective related to significant health effects that challenge young, growing and ageing families and the relationship with care providers. We were not disappointed in the results and it not often that wishes are so well fulfilled. As a result, now 5 years later, there is evidence of real growth in the inclusion of a family system presence, not only in the more traditional areas of maternal child health care, but with a widening perspective that includes health care of immigrant children, growth and development of fathers, mental health, illnesses of ageing and ethics at end of life. We also see in this issue the next level of studies with more complex exploration of family relational challenges with regard to health care and approaches more conceptual than 5 years ago. What is even more encouraging in these papers is that they represent interdisciplinary and global perspectives, suggesting that the interest in health care from the perspective of the family is growing broader and more in depth. We also encouraged theory and philosophy papers related to families and health in support of our intention to widen the discourse related to family health and health care. It is our hope that more such papers as well as other disciplinary concerns in this field will continue to be published. With the advances in knowledge development to which this issue attests, our concerns now are less with excellence of growing scholarship in family care than its clinical application. Historically, comprehension of family involvement in health care has functioned far more as a general contextual framework without full recognition of the family as an interactive field. Consequentially, despite the growing fund of knowledge, clinically most often the family is assessed more for their likely support or disruption of care to the patient than for their clinical needs per se. Or to quote Ho (in this issue) ‘Family members (in medicine) are seen as a means to patient’s clinical ends’. Indeed, even when there are informal family interventions in clinical practice, outcomes primarily focus on the individual. Because holding onto the individualized perspective in health care inscrutably exists (despite the significance of the family to the individual well-being recognized in most human relationship sciences – child development, psychology and sociology) the next challenge is praxis. Thankfully, for our purposes these papers go right to the heart of the matter and with few exceptions acknowledge either implicitly or explicitly the systemic reality of the family in health care. This kind of confirmation begins to lay the foundation for science and theory development which ultimately can move practice into a systemic convergence. A full systemic view in health care includes three levels; the family as a system, the boundaries between the family and the immediate healthcare system and the larger societal system of values and policies that affects family care. One of the most pleasurable parts of the opportunity to guest edit a special issue is seeing the broad view as the result of access to all manuscripts at the same time. This fosters an analysis which allows cross-sectional themes to emerge which inform about different points of view, what issues are concerning investigators internationally about the main theme of the issue and complementarities of different methodological approaches in the study of similar concerns. It is very exciting to us to find that the themes which emerged from this analysis follow exactly this full systemic view of the issues that concern the investigators represented in this issue: a view from inside the family, a view of cross-boundary relationships between families and healthcare providers and a view of macro system influence on ethical practice and health policy. In the remainder of this discussion we will direct attention to how each of the papers included in the issue link together and articulate the three systemic perspectives. The family system perspective does not assume the family is a homogeneous group – in fact, quite the contrary. This view also does not preclude a focus on the experience of different members of the family in response to other family members – in fact the systemic approach assumes all relationships in the family are interact ional and reciprocal, making the effect on one family member an effect on the family as a whole which becomes the unit of analysis. This section represents the largest group of studies and most investigators have approached this view appropriately from a phenomenological perspective yielding deep descriptions or discussions of the experience of significant health changes with profound effects on family life. There are two groups of papers in this section; those that deal with long-term decline in a chronic illness of a family member and those that experience growth of the family through the addition of a child. Long-term care giving. The paper that most closely demonstrates the interactional and reciprocal relationships in family caring is the Tranvåg and Kristoffersen study of cumulative effects of spousal cohabitant experience with bipolar disease. In this study, of a remarkable range of years of shared lives with significant mental illness with a partner they document hauntingly how the struggle to find meaning in the prolonged experience is cumulative as well as the loss and suffering of the family member. The key to its resolution is linked to insight – or finding meaning in the struggle. The Kartalova-O' Doherty and Doherty study complements the Tranvåg study by exploring influential contextual variables that influence family care giving in a similar situation, taking it out of the realm of understanding the existential to examining behavioural strategies used by family caretakers/carers. These studies together provide a much wider view than either one alone can to understand the phenomenon of long-term caring with the mentally ill. It is notable that investigators in both studies found that older carers showed greater acceptance and reconciliation of their life as carers, with the Tranvåg and Kristoffersen study providing the explanation through its deep description of experience – a perfect example of the complementarities. A related study (Kolmer et al.) of family motives of long-term care regardless of the condition shares a mutual interest in the carer experience, albeit from a different perspective. This study also recognizes explicitly the systemic nature of care giving and the complexity of family relationships that influence perceptions of ‘burden’ so long held to be a natural accompaniment of long-term family care giving. Regardless of gender or formal relationship and despite the range of motives, the highest ranked was found to be congruent with the Tranvåg/Kristoffersen study; values of a meaningful life. The last two studies in this area of family care giving are concerned with health crises and its aftermath in the family (Röing et al. and Wallengren et al.). Both recognize the uncertainty and chaos in rapidly emergent health situations that is quite different than the slow unfolding of mental illness in its effect. The Röing, Hirsch and Holmström study, because of the phenomenological method, is able to provide a moving description of the life of a patient with oral cancer and how it is especially restricted because of symbolic meanings of the oral in its psychological and social function in identity formation and social discourse. Alteration in those functions has a profound impact on the family often unacknowledged in health care. The authors legitimately claim that except for that exceptionality the deep descriptions of family psychological and physical costs can be applied to other similar situations families experience from the time of diagnosis through the uncertainties of treatment. The Wallengren et al. study shows how a significant cardiovascular accident (stroke) is both a medical and a family emergency. The investigators in this study explicitly acknowledge the systemic approach that includes the family as a care giving unit calling for clinicians to recognize a stroke as a family illness. Perhaps the most significant result in this study is the influence of the ‘turning point’ in family crisis response – that time which evolves out of chaos and activity when the family carer(s) seeks to acquire knowledge needed in a radically changed family situation. They rightly point out that identifying this point is essential for timing supportive family-based interventions. Together these papers provide a coherent group that inform us of many dimensions of the lives of family carers. There are considerable implications for family systems intervention in these studies and we hope that might be a next step. Becoming a father. The strong representation of studies concerned with experiences of new fathers was a surprise and in strong contrast to the studies represented 5 years ago when studies clearly focused on the mother. This development represents social change and is badly needed to learn more of the full family in formation. First time fatherhood and father–infant relationship are examined from four different tableaus: fathers with normal conception and full-term normal birth (Premberg et al. and Fägerskiöld), fathers with in vitro fertilization and full-term birth (Hjelmsted and Collins) and fathers with normal conception and premature birth (Lindberg et al.). These studies taken together inform each other – the phenomenological experience of attaining fatherhood, the influence of psychological characteristics of the father perhaps irregardless technological advances in reproduction, and the effect of circumstantial issues of a high-risk infant and possible long-term developmental effects of prematurity on attainment of fatherhood. While results differ, several striking themes overlap, showing that fathers seek ways to shape their potential parental role different from the traditional father role and also different from the role of the mother. All studies also underline again how the marital relationship is altered; surprisingly showing that infant risk can actually strengthen the relationship. Another significant shared focus is fathers’ awareness of the significance of the infant on changes and opportunities in their own development. Finally, there was both implicit and explicit criticism of current health practices in antepartem and postpartum teaching which does not promote this development and excludes father needs and experiences in tacit and unequivocal ways. Both of these criticisms contain important information to critically inform health teaching and force a fuller family view. One dimension of family systems theory closely related to the clinical reality of providing care is the concept of boundaries of the family and the care giving systems; both of which serve to provide each systems’ identity, values and behaviours. When families enter care, the family and the healthcare provider both accept this interface and transact health care across these boundaries. The success of family assessment and prescriptive interventions depends on interpretations based on success of these transactions. This second group of papers illustrates this view. The Mäenpää and Åstedt-Kurki study examines expansion of the boundaries of school provided child health care to include families. They show in this case that families can be more open to this expansion than are institutions and can recognize nurses to be more central to family well-being than do the schools in this study. Both this study and the Helgadóttir and Wilson study thus inspect the need for comprehensive health care within the context of institutional and family linkages and the pivotal role of nursing in maintaining this interface. On the other hand, the Andrén and Elmståhl study represents this interface more directly by testing interventions which might be provided by health professionals to relieve carer stress. This was a well-designed study with impressive results which suggest that knowing more about the family carer’s context and intervening early is a key to making this interface work for the family. Similarly, Meier and Brauer’s focus narrowly on nursing of families that relies on reciprocity of role relationships between the family and the nurse, as well as an existential perspective. They raise an important question of how nurses should practice with families in the absence of no clear professional standards despite growing recognition that such practice is essential. Moreover, they pose a complex conceptualization of the nursing discipline as therapeutic agents that rest on a commitment to apprehending the experiential reality of the family and the obligation to engage with families to help them manage their suffering. In so doing they open the boundary between family and nurse to merge the healthcare experience for both. Their concern that Gadow’s existential advocacy philosophy is not only insufficient, but may be antithetical to family coping, mirrors concerns about focusing on the individual in health care raised by Ho. They also propose a broader definition of the focus on the individual client, arguing that in many institutional care giving contexts the traditions of individualization does not transfer to a collective perspective, claiming that both the individual and the collective are necessary for the holistic point of view as the foundation of caring theory. The final paper in the section (Berlin et al.) of assessment of health risks for children provides a particularly cogent and timely example of how the boundary interface is made more difficult. They show that cultural differences between the nurse and the family make assessment of risk far more ambiguous both because of inadequate assessment methods and the potential bias of ethnocentrism. It is not within the scope of this issue to examine the many social or political forces at the macro system level which enable or constrain family care. However, two excellent papers target key concerns that influence how family care is delivered. Ho’s paper presents a critical analysis regarding the family place in clinical decision-making within the context of bioethical practices. In this context, she argues for autonomy, the prevailing ethic tempered by awareness of patient’s vulnerability and dependency in the relational identity that exists in family and intimate relationships. Her paper clearly shows the complexity of the autonomy concept, suggesting if family is at the centre of one’s existence then considering mutual interests is at the core of relational autonomy in medical decision-making. She convincingly argues the moral issue of the effect of medical decision-making without family involvement on family members who are essential to caring and recovery; more important than ever in the state of increasing fragmentation of care providers where patient relational identity is essentially absent. She reasons that clinicians need to understand the patient's need for the familial situation, and that they should trust family dynamics rather than stand in the way of them. The Karlsson et al. paper, regarding the intricacies of distribution of formal/informal care giving structures for the elderly, agrees in principle with the concern that families can be overlooked in traditions of care or policy formation. Healthcare policy influence on families is patently clear in this report of the Swedish Study on Aging and Care as well as inferences of distributive justice in the debate regarding responsibility for care of the elderly. A shift away from formal or institutional care to a complementary model of family and formal home health has caused a gap between what elderly need and provision of care that depends heavily on the family. Karlsson et al. argue that family contribution should be compensated for this responsibility with greater knowledge transfer and social support. These papers confirm the need to understand more fully the systems concept of the family as a potent variable with implications for patient outcome. The studies forge new directions in research and theory development showing the nature of the inside experience of the family, the reciprocal family/healthcare relationships in health and illness, and the importance of ethical and contemporary health policy decisions that affect family health. At the end of the day, these papers endorse a paradigmatic shift where the family becomes a unit of analysis that directs assessment, intervention, healing and ultimately the outcomes of health care for both the patient and the family. This point of view is prescriptive and when adopted will profoundly alter practice, a change long overdue since historically families have always provided the most dominant caring function in human relationships and health outcomes embedded in the family. What these papers do is convincingly document from the point of view of the family why this paradigm shift is necessary. It is our hope that some of these studies will result ultimately in testing targeted family interventions which can reduce family stress in the many health situations described in this issue.