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Nurturing Family Resilience in Response to Chronic Illness: An Integrative Approach to Health and Growth Promotion

  • Ester R. Shapiro
Chapter

Abstract

In 1995, Ann Burack Weiss published a paper in Social Work describing how her personal and professional experiences in family chronic illness caretaking, the enormous gap between practitioner biomedical education and the real-life challenges that families and caretakers faced, and their often overlooked strengths, inspired her to collect chronicles of family caretaking. In The Caregiver’s Tale: Loss and Renewal in Memoirs of Family Life (2003), she recommends selected memoirs educating practitioners about family lived experiences with chronic illness. Her book is used in the field of medical humanities to help physicians’ empathically connect to patients’ illness experiences through narratives and other creative arts (Charon, 2008). In a volume on family systems and health, McDaniel, Hepworth, and Doherty (2003) asked contributors to present their frameworks and practice in light of a personal experience of facing family chronic illness that informed their work. Other writers have depicted efforts to move beyond “technocratic” medical models of illness and cure to offer “humanistic” biopsychosocial or “holistic” perspectives emphasizing cultural and spiritual worldviews of illness and wellness (Davis-Floyd, 2001; Walsh, 2006).

Keywords

Chronic Illness Positive Emotion Family System Family Response Family Routine 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Introduction: Learning From Family Lived Experiences of Chronic Illness

In 1995, Ann Burack Weiss published a paper in Social Work describing how her personal and professional experiences in family chronic illness caretaking, the enormous gap between practitioner biomedical education and the real-life challenges that families and caretakers faced, and their often overlooked strengths, inspired her to collect chronicles of family caretaking. In The Caregiver’s Tale: Loss and Renewal in Memoirs of Family Life (2003), she recommends selected memoirs educating practitioners about family lived experiences with chronic illness. Her book is used in the field of medical humanities to help physicians’ empathically connect to patients’ illness experiences through narratives and other creative arts (Charon, 2008). In a volume on family systems and health, McDaniel, Hepworth, and Doherty (2003) asked contributors to present their frameworks and practice in light of a personal experience of facing family chronic illness that informed their work. Other writers have depicted efforts to move beyond “technocratic” medical models of illness and cure to offer “humanistic” biopsychosocial or “holistic” ­perspectives emphasizing cultural and spiritual worldviews of illness and wellness (Davis-Floyd, 2001; Walsh, 2006).

These interdisciplinary writings affirm that stories of lived experiences can educate and inspire us in striving for systemic transformations to nurture the family resilience at the heart of health. Yet Steinglass (2006) notes that promising family medicine and primary health approaches initiated as policies responsive to 1960s social movements and designed to link personal and social health were undermined by ideologies and economics supporting individual, de-contextualized, symptom-oriented care. At this time (June 2012), we stand on thresholds of crisis and tipping points for change. US and global chronic illness prevalence, challenges of co-chronicity, and vast social and economic illness burdens have resulted in calls for transformation of social conditions and systems of care that offer more favorable contexts for family and community-based health promotion and resilience. Achieving change requires linking knowledge based on both lived experiences and research evidence with critical perspectives on social determinants of health and flourishing, as well as with strategies for effective advocacy. However, dominance of biomedical illness models in health care delivery and reimbursement, in widely endorsed cultural beliefs and policies (Carman et al, 2010), and in researcher and provider training presents significant challenges to change. Martin and Petersen (2009) argue that achieving new models of chronic illness care requires “reflexive synthesis” of patient-centered perspectives and scientific worldviews of evidence-based medicine, exploring the social construction of chronicity as a sociopolitical discourse influenced by economic and power relations. Wood and Miller (2005) suggest that advancing family systems approaches to health requires both investment in theoretically guided research and challenges to “dominant paradigms” emphasizing individual symptoms, noting examples in developmental psychopathology and positive psychology as offering paradigm-shifting areas of theoretically based research incorporating developmental systems and the study of strengths.

This chapter provides critical interdisciplinary reviews towards a “reflexive synthesis” of ecosystemic models and participatory research, practice, and advocacy methods as tools in applying family health, growth, and resilience perspectives in family-centered chronic illness care. Increasingly, interdisciplinary literatures use complex adaptive systems theories to study linked processes contributing to child, adult, family, and environmental resilience, wellness, and flourishing when facing challenges. Further, resilience resources are viewed not as abilities of a lucky few but as capabilities emerging from unequal social distribution of adverse exposures and access to valuable resources, shifting perspective from individual good fortune in “beating the odds” to social responsibility in “changing the odds” (Seccombe, 2002). Exploring family resilience in response to chronic illness can contribute uniquely to this re-visioning by synthesizing well-established interdisciplinary, ecosystemic literatures within family, developmental, public health, and community sciences studying health promotion, resilience, and flourishing with participatory research and empowerment practice methods emphasizing ethical perspectives on inclusion, on social distribution of risk factors and protective resources, and on accountability for health equity. This synthesis links US and global initiatives in health promotion to family-centered chronic illness care through an intergenerational, ecosystemic lens emphasizing families as partners in collaborative care. Health and mental health are viewed holistically, integrating treatment, problem prevention, and health promotion across systems and linking social policies and their embodiment through impacts on shared, evolving family lives. This approach emphasizes empowerment education and resource rights advocacy for families struggling to meet the demands of chronic illness care while protecting capacities for growth.

Case Example: Intergenerational Impacts of Chronic Illness in My Own Immigrant Family

My own personal apprenticeship in learning from the enduring generosity of family resilience as a living legacy began in our extended Eastern European Cuban Jewish household in Havana, already transplanted from the Russian Polish border in my paternal grandparents’ generation and soon to move to Miami in the aftermath of the Cuban revolution. Our intergenerational household was organized around managing my grandfather Eliezer/Lazaro’s chronic neurological disorder, consequent to an accident in early adolescence when he was kicked in the head by a horse, leaving a visible hoof-shaped dent on his right forehead. In a family life filled with vivid, practical, conflicting, and contested stories illustrating how we survived unrelenting confrontations with politics and history, Abuelo Lazaro’s unfolding chronic illness story was simultaneously ever-present yet invisible and unnamed, part of an implicit family agreement to protect his dignity by never speaking of his neurological impairment. Instead, we grew up hearing a paradigmatic story of my grandparents’ marriage and family life as a romantic love story on the shifting borders of Russia and Poland, now Byelorussia. This dominant story, in which chronic illness was a minor theme, highlighted the love, loyalty, courage, and ingenuity that would become foundational to our family’s resilience in confronting wars, revolutions, economic hardship, and multiple immigrations.

As a young man, my grandfather survived loss and dispersal of his once-secure Russian Jewish landowning family in the 1917 Bolshevik revolution, with grief exacerbating his seizure disorder. Slipping over the border to evade military service, he proposed to my Abuela Bashe/Bertha, who had fallen enduringly in love with the handsome, elegant young scion of a well-off, stable family even when his circumstances radically changed. He insisted they immigrate immediately, but she persuaded him to start their family in Poland as her deeply religious mother refused to leave. They finally immigrated to rural Cuba in 1936 with 11-year-old Consuelo, 9-year-old Noel, and my 5-year-old father, Jaime, just one step ahead of the impending holocaust. Stresses of loss and dislocation worsened his legendary temper and seizures. Yet, cunningly and laboriously, initially with the collaboration of her three children, then enlisting her daughters-in-law and growing grandchildren, my grandmother created a family life where no matter the turmoil and upheaval, my functionally limited, emotionally expressive, at times explosive grandfather was sheltered from family stresses, served scrupulously healthy meals, received the best possible medical care, and enjoyed privileged status as head of household and working man. She cared for him beyond his death in his 80s to her own death a decade later, his spirit by her side.

My father, their youngest son, proudly recalled that shortly before my birth in 1952 my grandfather had one of the first corpus callosotomies, a pioneering surgery performed by his Havana physicians and curing his seizure disorder while significantly controlling his outbursts. My 21-year-old father and his 24-year-old brother were already running the family business, launching their own families as we, too, faced revolutions and upheavals while caring for an unacknowledged invalid at the heart of our family lives. These complex family relationships, embracing multifaceted contradictions of love and loyalty, tender affection and hair-trigger outbursts of rage, generosity and resentments, formed shared, unfolding family legacies while impacting each uniquely due to roles, relationships, and developmental timing. My Aunt Consuelo shared a very different story of the consequences of her father’s illness in her life due to her age, gender, and family life cycle ­timing. Her lively, engaging temperament and exotic beauty bloomed dangerously in adolescence across cultures, prior to her father’s neurosurgery and near the height of his outbursts. Her sexual curiosity matched by persistent romantic attention from powerful men in their close-knit rural Cuban town led to passionate escapades that my father was assigned to monitor and inform on, triggering her father’s violence and urgently demanding resolution. At age 16, she was married to my Uncle Isaac, a recent Polish Jewish refugee whose lifelong violent temper and obsessive loyalty to his sister were interpreted as consequences of being sole family survivors of the holocaust. As my grandparents and father told me this story, Consuelo’s dangerous disobedience forced the family to arrange an appropriate marriage. Only after both his parents’ deaths could my father acknowledge his father’s condition and admit that his mother’s imposition of extended family togetherness on her sons while extruding her daughter seemed necessary to family survival yet also exacted enduring consequences.

These experiences taught us to respect the centrality of health as a foundational family resource, one depending as much on societal and family commitments as on individuals. In 50 years of family political disagreements over Cuba’s revolution, our single agreement is shared respect for Cuba’s commitment to universal access to health care. Growing up between cultures, I learned to appreciate how our multifaceted, evolving family stories were responsive to changing circumstances, operating as powerful, flexible adaptive strategies, and constructively channeling emotions and purposefully guiding choreographies of what only appeared to be private individual actions. Our family actions and meanings created necessary stability in the face of potentially overwhelming changes, protecting family functioning as demands of chronic illness intersected with family life cycle transitions and changing cultural contexts. Our intergenerational extended family patterns of care, bridging gender and generations, remain characteristic for ethnically diverse and immigrant families caring for ailing elders who contribute to as well as receive care (Gallant, Spitze, & Grove, 2010).

Translating Lived Experiences of Family Resilience and Health into Frameworks for Research, Practice, and Advocacy

These multifaceted intergenerational family experiences of hardship, struggle, and resilience form the foundation for my own work, appreciating considerable strengths families bring to life course challenges and consequences of shared responses for altered life pathways and future possibilities. I view family health and mental health as critically important positive adaptive resources, which family members strive to protect through both overt and implicit actions and meanings. Chronic ill health, with its anticipation of enduring compromises and potential decline, can initiate life changes with cascading stresses, sometimes forcing families to change established responses to shared life course demands. These demands lead to complex, multifaceted responses that even when private imply consequences for the family as a unit: sacrifices made openly or secretly, with loving generosity that also can be tinged with resentment, new responses forged with creativity and courage that also can contain profound exhaustion and terrible fear of the future. As our own families and those we work with teach us, calamities of chronic illness may take over family life at moments of crisis that become turning points. Yet chronic illness cannot remain the whole story, or all else the family strives for will be consumed by its demands. As families adapt and co-create “the new normal,” we can join them at multiple points of entry to recognize and affirm the realities of their suffering and fears, while also identifying health- and growth-promoting family resilience resources. In my own interdisciplinary work exploring the intergenerational family life cycle as a resource for shared health and growth, I have expanded sources informing how family adaptations to both expected change and unanticipated challenges can preserve capacities for flexible responding that promotes resilience. Beginning with feminist family and developmental systems integrations of individual and relational perspectives on how families face adversities while protecting shared development (Shapiro, 1994), I have incorporated culturally informed, community-based, and social justice approaches integrating health promotion, problem prevention, and symptom-reduction interventions that make the most of family life cycle transitions as health- and growth-promoting opportunities (Shapiro, 2002, 2008a).

Critical assessment of frameworks and their implications in enhancing or impeding access to needed health resources themselves operate as important resilience resources for patients and families as well as for providers, researchers, and policy makers. As Ungar (2010) suggests within culturally informed family resilience, Wallerstein (2006) within community-based participatory health, and Prilleltensky and Prilleltensky (2005) within critical health and community psychology, patients, families, and communities seeking to improve health and wellness must navigate environments for needed resources while critically assessing barriers and joining with others to insist on resource rights. Advances in medical research and acute care save and prolong more lives, but with an inconsistent commitment to the quality of those lives. Global comparative perspectives on chronic illness care, holistic health and mental health promotion, and health and human rights can help us gather frameworks, research evidence, and practice models that transcend the limitations of our particular setting and discipline (Perry, Presley-Cantrell, & Dhingra, 2010; Wellard, 2010).

The Center for Disease Control ([CDC], 2011) reported that nearly half the US population meets criteria for at least one chronic illness, and one third for two or more. Globally, the World Health Organization ([WHO], 2008) estimated that by 2020 chronic diseases could account for 73% of deaths and 60% of global disease burden. Exclusively biomedical approaches are unsuited to chronic illness care, as they isolate individuals from family and social resources, emphasizing physician expertise while viewing patients and families as passive recipients of care. Inappropriate application of medical specialty oriented care contributes to crises of cost, quality, and equity (Berwick, 2002; Health and Human Services, 2011; WHO, 2008). Following US and global health promotion and human ­development frameworks, we view health not just as absence of illness but as the presence of wellness and human rights at the highest possible attainable standards of health; recognize multisystemic social determinants of health, with only 10–15% attributable to direct health care, 10% to genetic endowment, and as much as 75% attributable to ecological burdens and resources throughout life. According to these models, health outcomes also are determined by education, housing, employment, and environmental quality; health care organization, quality, and access favoring primary care; and individual, family, and community engagement in promoting positive health outcomes while preventing and treating illness (Wellard, 2010; WHO, 2008). These models mobilize empowered multisector partnership to reduce risks and decrease chronic illness burdens.

Both US and global health promotion approaches to chronic illness care are consistent with holistic person and family centered, multisystemic strengths-based perspectives on health and mental health emphasized by the literature on family resilience. However, they contradict US symptom-oriented care emphasizing technological solutions, what Kleinman (1988) termed “the culture of medicine.” Clarke (2010) describes “biomedicalization” as an ideology promoting medical interventions for problems of everyday life, treating “diseases” of menopause, or medicating children to manage behavior problems that would be best addressed through family and community supports. Consistent with these critiques, Berwick (2002, 2009) offers a guide to health care reform emphasizing patient and family-centered, systems-minded, and knowledge-based care. Berwick was appointed to lead Medicare/Medicaid while implementing the Affordable Care Act, which prioritizes partnerships in prevention as well as health care delivery, monitoring outcomes to achieve quality, effectiveness, and equity. Regrettably, as of this writing, both the Affordable Care Act and Berwick’s directorship have become controversial because they challenge this “dominant paradigm” and threaten the status quo.

Individualized, decontextualized health care interventions place disproportionate burdens on families coping with chronic illness demands. They require managing visits to multiple providers, adherence to complex medications, and compliance with intrusive interventions without challenging medical authority. They may require draconian personal “lifestyle” solutions without consideration of patient context such as conditions of employment, neighborhood characteristics, co-occurring illnesses, or other family needs and constraints. Finally, they count on families, particularly women, to provide support services that are invisible and unsupported within biomedicine but are essential to patient and family health outcomes and quality of life (Singer, Biegel, & Ethridge, 2009). Feminist studies of work and family refer to “the third shift” (Gerstel, 2000) and “shadow workforce” (Bookman & Harrington, 2007) as women become responsible for health and disability-related family caretaking within eroding health and social service systems. Singer et al. (2009) recommend integrating knowledge across family chronic illness and disability studies to better support family caregivers. Disability studies argue that resilience and recovery require partnerships for empowerment at multiple systemic levels, including critical analysis of social stigma, identification of barriers to resource rights promoting health as measured by person and family centered quality of life, and legal advocacy for universal access to these rights (Rosenthal, Kosciulek, Lee, Frain, & Ditchman, 2009).

Ecosystemic Approaches to Resilience in Developmental, Family, and Community Sciences

Emerging interdisciplinary theories with associated research exploring ecosystemic health and development perspectives offer ways to conceptualize and study positive adaptation and resilience in response to ordinary growth and change as impacted by adversities across bio-psycho-social-environmental domains addressing interrelated health and growth outcomes. These include ecologies of human development in child psychology (Bronfenbrenner, 1979; Masten & Obradovic, 2008; Sandler, 2001), developmental psychopathology and resilience (Cicchetti & Cohen, 2005; Luthar & Brown, 2007), developmental contextualism (Lerner, Jacobs, & Wertlieb, 2003; Ungar, 2011), family systems theory (Becvar & Becvar, 2009), life-course developmental perspectives on health, growth, and well-being or flourishing (Brim, Ryff, & Kessler, 2004; Elder, Johnson, & Crosnoe, 2003; Keyes, 2007), ecosystemic public health (Krieger, 2001; Lu et al., 2010), family resilience (Becvar, 2007; Ungar, 2010; Walsh, 2006), holistic health integrating mind, body, spirit, and community (Bell et al., 2002; IOM, 2009; Martin & Sturmberg, 2009), and holistic environmental resilience studies (Capra, 2005). Ecosystemic approaches understand human health and development as adaptations within complex living systems characterized by constant change, involving transactions in relationships and environments evolving over time across biological, cognitive, emotional, behavioral, interpersonal, institutional, and environmental domains (O’Brien, 2005). From cellular to cultural, systems are embedded, interdependent, and constantly interacting, best understood using the two dimensions of time and environment or setting (Rolland & Walsh, 2006). Depending on our theoretical and practice disciplines and settings, we may join a system to promote change at a macro-systems—community, population, or policy—level, or at a micro-systems—individual or family—level. Regardless of entry and purpose, we strive to identify leverage points and promote linkages associated with more favorable intersections between contexts and their embodiments (Krieger, 2001; Wandersman, 2003), never forgetting that violent neighborhoods or exposure to carcinogens result in real bodies burdened by health consequences of harm.

Because complexity sciences view outcomes as dynamic and probabilistic rather than controllable and predictable, they use multimethod quantitative and qualitative research to identify variables and processes associated with desired positive outcomes for a particular dimension of health or development. In identifying valued outcomes, ecosystemic developmental approaches highlight systemic capacity to respond flexibly to future challenges of change. These models recognize the value of developmental thresholds and transitions as offering meaningful opportunities to introduce resilience and growth promoting resources (Shonkoff & Phillips, 2000). Interventions during critical transitions centered on the family’s own goals and recognizing individuality and interdependence help families struggling with adversities renew a sense of shared purpose and negotiate more favorable growth-promoting relationships within and outside the family (Shapiro, 2008a). Complex systems perspectives argue that adaptations cannot be neatly categorized as successful or maladaptive without considering contexts and consequences for development. As assumed in the Family Adjustment and Adaptation Resiliency model ([FAAR], Patterson, 2002), responses deemed necessary and appropriate during an immediate adjustment phase may not necessarily serve longer term adaptation. Yet immediate adaptive strategies can become habitual and thus limit family responses to new demands.

Complex adaptive systems approaches to chronic illness care (Bell et al., 2002; Martin & Sturmberg, 2009) view transactions between individual lived experiences of health and social environments as dynamic adaptations in an “emergent present.” Narratives of past experiences interface with evolving contexts to organize adaptive responding shaping illness trajectories. Across these literatures, ecosystemic thinking appreciates the interdependence of emotion regulation and meanings associated with health- and growth-promoting adaptations. Individualized interventions mobilizing multisystemic resources can promote new forms of adaptive self-organizing associated with improved health outcomes (Griffiths et al., 2010). Holistic and ecosystemic approaches emphasize allodynamic processes, including short-term allostasis and long-term allostatic load (McEwen & Gianaros, 2011). This concept offers a biological systems understanding of efforts required in returning biological processes to stability after exposure to stressors or changes, modeling how stressful environments become embodied as illness conditions while remaining amenable to change throughout life. At the same time, these approaches link genetics, biology, health, and development to qualities of societies as well as particular “localities” as settings for health and development, linking genes and neurons to families and neighborhoods both in childhood (IOM, 2009; Shonkoff & Phillips, 2000) and later life (McEwen & Gianaros, 2011). Intersections of timing and contexts create dynamic circumstances as potential pathways that, once initiated, become stable and self-organizing while remaining amenable to change. Due to the dynamic complexity of stressors and resources, environments may be more or less health and growth promoting, at the same time that individuals and families may navigate high-risk or resource-rich environments differently depending on appraisals and beliefs that offer stability while remaining responsive to new circumstances.

Ecosystemic frameworks present significant challenges to predominant biomedical research methods (Bell et al., 2002; Ungar, 2011; Wandersman, 2003). Ungar suggests that ecosystemic resilience research requires a paradigm shift using the four guiding principles of decentralization of the individual, recognition of complexity, atypicality or uniqueness of pathways, and cultural relativity. Ecosystemic health and development researchers study specific mechanisms contributing to outcomes of interest, while recognizing that selection of independent, moderating/mediating, and dependent variables relies on discipline-based agreements guiding how best to reduce complexity of interrelated phenomen a allowing for systematic study (O’Brien, 2005). Outcomes of interest can be guided by biomedicalization to focus on pathology, or can assess both disease burden and positive processes such as wellness or flourishing (Keyes, 2007). Both negative and positive factors contributing to multifaceted outcomes can cluster and cascade, creating “vicious circles” of associated stressors or “virtuous circles” of associated positive resources promoting resilience. These convergences and contingencies are not fully captured by statistical research modeling. Further, well-controlled studies do not translate directly to real-life settings, what researchers concerned with contextualizing evidence-based practice term ecological validity (Bernal, 2006; Henggeler, Schoenwald, Bourdin, Rowland, & Cunningham, 2009).

Ecosystemic interventions use research evidence to target developmental turning points in light of multiple systems that can transform developmental contexts. For example, Lu et al. (2010) integrate ecosystemic and life-course perspectives in public health to map interventions with the potential to change persistent inequalities in birth outcomes for black and white women by strengthening positive health (i.e., prenatal care, gender and race sensitive services), family relational (i.e., father involvement), and social processes (i.e., equal pay for women’s work). Ecosystemic health and development perspectives guide assessment and intervention for unique individuals and families in specific settings strategically, selecting leverage points and identifying linkages in the “web” or “map” of risk and protective factors, including relevant organizations and institutions supporting change. At the same time, these perspectives suggest ethical principles guiding relationships of parts to whole at multiple levels: inclusive knowledge based on dialogues that recognize and respect differences within a cultural context, with special attention to those most vulnerable; respect for diversity as protecting future, flexible responses to change; and monitoring sustainability while evaluating when lack of reciprocity and failures of accountability may damage future chances for the system as a whole (Capra, 2005; Prilleltensky & Prilleltensky, 2005; Wandersman, 2003). Because power inequalities in social relationships can lead to deliberate or inadvertent abuses, ecosystemic approaches turn to participatory and partnership methods to identify qualities of ­relationships, addressing and resolving conflicts while protecting communities and their constituents. Articulating impacts of cultural practices and social inequalities affecting within-family power asymmetries becomes especially important in family resilience studies, as gender and generation create power imbalances and potential vulnerabilities that can be exacerbated by chronic illness. Positive parenting, supported across literatures as a powerful protective factor (Masten & Obradovic, 2008; Sandler, Schoenfelder, Wolchik, & MacKinnon, 2011), requires marital, extended family, and societal support sensitive to dilemmas of gender inequality. Many cultures give children and elders opportunities to contribute, and families experiencing adversities are motivated to assist others within and outside the family in ways associated with resilience (Lietz, 2011). Resilient families draw from diverse cultural traditions to protect gendered mutuality and wellness of parenting adults as they take responsibility for dependent members.

Participatory and Inclusive Methods as Tools in Promoting Resilience

While ecosystemic health and development perspectives guide us to look at relationships between parts and whole in adaptive processes of change, they do not themselves address processes of power and collaboration. Participatory and inclusive methods, which are used in both research and practice, create knowledge about problems and solutions through communities of inquiry and partnerships that include all those potentially affected (Minkler, 2004; Wandersman, 2003). Further, these approaches prioritize the voices and knowledge of those closest to the problem, including those affected, their family caretakers, and their most hands-on direct care providers, who are often also the most powerless within society and systems of care. Using the language of disabilities rights, these approaches say to researchers, practitioners, and policy makers, “nothing about us without us” (Berwick, 2009). Finally, participatory methods emphasize shared outcomes monitoring as tools for advocacy and accountability, helping to identify ineffective interventions or unfair distribution of resources (Wandersman, 2003). Freire’s participatory education, widely used in educational and health promotion settings (Wallerstein, 2006), suggests that “Concientización” or consciousness raising regarding problems and barriers impeding access to resources needs to be followed by “annunciation” or a vision of what should be and steps towards its actualization, creating a “pedagogy of hope” as a potent resilience resource. Participatory methods are implicitly ecosystemic, connecting individual knowledge to dialogues in relationships of mutual teaching and learning, and connect these in turn to societal distribution of material resources and shared meanings. These methods are compatible with scientific research design but deliberately democratize steps in posing meaningful, ecologically valid research questions applicable to practice and policy settings and promoting equity. Wandersman (2003) argues that community science expands biomedical prevention science by including community members and other “stakeholders” in “Getting to Outcomes” using a ten-step partnership process posing research questions while highlighting community accountability. Bell et al. (2002) suggest that effective evidence-based practice integrating holistic health and biomedicine requires integration of patient-centered care principles and partnerships in identifying and monitoring desired outcomes. These researchers and others find that using patient and family centered quality of life measures to establish and monitor goals is associated with more effective practice.

As an example in family and community-based chronic illness care, the Children’s Hospital Resource Mother’s Project (St. James, Shapiro, & Weisbrun, 1999) combined ecosystemic and home-based peer outreach and empowerment approaches to prevention in a program supporting young reproductive-age women with PKU (phenylketonuria) who needed to implement a strict protein-restricted diet prior to pregnancy to protect the fetus from early, devastating neurological damage. Yet, hospital-based nutrition programs, requiring involvement of girls at the time they initiated sexual activity, failed to change dietary habits, with dire consequences for their infants. Mothers of children with PKU, who had learned the rigors of the diet and understood lived experiences of implementation, were trained as outreach educators to work with these young women, their partners, and extended families, using an individualized, ecosystemic, supportive education approach to increase adherence to the strict protein-restricted diet prior to and during pregnancy needed to protect birth outcomes. The study, with both quantitative and qualitative components, found that ecological contexts of PKU from the girls’ early childhoods, especially family income and education, resulted in two trajectories, one with higher risks leading to increased, enduring challenges, and one with greater resources protecting health and growth. The individualized home-based approach permitted shaping individualized educational interventions to address these different contexts for development, increasing adherence for all participants. The intervention significantly increased dietary adherence when compared to matched controls, as measured by maternal PKU blood levels and infant head circumference. Additionally, the home-based supportive education approach increased these chronically ill young mothers’ self-confidence in their capacity for mothering. Finally, the Resource Mothers, many of whom had postponed professional development due to their daughter’s chronic illness needs, described program participation as having inspired them to seek additional professional development.

In sum, ecosystemic frameworks on health interventions, used with participatory methods, include those most affected by problems and seek solutions through partnerships with practitioners, community-based organizations, and policy makers, offering powerful tools for changing contexts to promote family health and resilience. Expanding family peer support can strengthen empowered use of health care relationships, resource navigation and advocacy, improving health and well-being while transforming contexts and forming new, more favorable pathways for shared development.

Family Resilience and Chronic Illness: Review of the Relevant Literatures

Family Systems and Health: Contributions to Family Resilience Studies

Systemic family research and therapy literatures have a long history of focusing on positive family processes and strengths in chronic illness care, both in primary care and specialized health settings. A review of this broad literature, also termed medical or pediatric family therapy, is beyond the scope of this chapter. However, promoting family resilience in chronic illness care requires solid grounding in this work as it contributes to re-visioning family systems informed, holistic health care supporting provider reflexivity and partnerships (Bacigalupe, 2011; Campbell, 2003; Kazak, 2006; McDaniel, Campbell, Hepworth, & Lorenz, 2005; Wood & Miller, 2005). The Family systems and health field studies family-based health- and-growth promoting as well as health-and-growth compromising characteristics for individuals facing both acute and chronic illness. Family responses are seen as dynamic, multifaceted, and evolving in response to changing circumstances. In pioneering work studying family adaptive responses to chronic illness, Cole and Reiss (1993) described “representing” or meaning-making and “practicing” or everyday behaviors as key family protective processes. Further, Cole and Reiss understood multifaceted meaning-making processes as themselves dynamic adaptive strategies, influenced by specific chronic illness demands, in turn influencing family coping.

The family systems and health literature also has provided empirical reviews of family contributions to positive health outcomes, exploring family processes contributing to a continuum of positive and desired or negative illness outcomes. Campbell (2003) reviewed family interventions for physical disorders in four clinical areas: family caregiving of elders, childhood chronic illness, spouse involvement in chronic adult illness, and family involvement in health promotion and disease prevention. This review found that family support, sense of connection, and spousal and familial sharing of positive emotions were important protective processes associated with improved health outcomes. The review also noted that family conflicts or expressions of negative emotions such as criticism for continuing risky behaviors were associated with negative health outcomes. Campbell found empirical support for three types of family interventions: educational interventions enhancing family knowledge of illness and illness-specific family support; family psycho-education informed by a broader family systems perspective on positive family relationships, specifically targeting illness knowledge as well as family protective factors; and family therapy. Fisher (2005) reviewed theoretical bases and empirical support for family interventions in chronic disease, identifying family emotional regulation and meaning-making as primary adaptive strategies, suggesting that these result in secondary adaptive strategies relative to altering family routines and problem solving. Wood and Miller (2005) reviewed the research literature on family functioning impacting individual health. These authors argue for theoretically grounded, ecosystemic research on mechanisms by which family processes influence health outcomes, exploring a Bio-Behavioral Family Model highlighting parent/child attachments, quality of couples’ relationships, and family emotional climate as offering critical links between biological processes and health outcomes. Their review identifies the importance of protecting family routines and rituals disrupted by illness and medical management, especially for children; recognizing family stressors as biosocial pathways to illness; nurturing positive emotions in loving relationships; and reducing negative emotional cycles or conflicts to improve health.

Hartmann, Bazner, Wild, Eisler, and Herzog (2010) conducted a meta-analysis of research on family involvement in the treatment of adult patients with chronic medical conditions. Their study identified 52 relevant randomized control trials, primarily for cardiovascular conditions including stroke, cancer, and arthritis. Interventions were primarily relationship-focused family interventions and educational interventions. Both types of family interventions showed modest but statistically and clinically significant effects, with somewhat greater effects for relationship-focused family interventions. In addition, family systems and health literatures have focused on dyadic relationships as they contribute to chronic illness coping, increasingly studying these longitudinally for couples’ coping with the chronic illness of an adult partner (Berg & Upchurch, 2007) and parents coping with a child’s chronic illness (Alderfer et al., 2008). These reviews apply frameworks and research methods and identify variables complementing theory and research in family resilience and health.

Family Resilience in Family Studies: Positive Adaptation Under Stress

Two major approaches to family resilience form the foundation for work on family resilience in response to chronic illness, a family research strand with foundations in family sociology and family health psychology, and a family therapy strand (Patterson, 2002). In family sociology, the Resiliency Model of Family Stress, Adjustment and Adaptation proposed by McCubbin and colleagues (McCubbin, Thompson, & Thompson, 1999; Patterson, 2002) was based on Hill’s original family sociology perspective on family crisis, stress, and coping focused on precrisis family resources. McCubbin et al. (1999) developed the Double ABCX model of Family Adjustment and Adaptation to build on this model while incorporating variables influencing family responses after the crisis. This model views family outcomes in response to stress as resulting from dynamic interaction of these factors: illness and disability as family stressors among other stressors; resistance resources such as psychological or economic resources that can counterbalance stressors; family appraisal of the illness and disability; and family coping strategies. These factors result in a crisis, with immediate adjustments focused on the illness, which then challenge the family to implement changes restoring balance and capacities to meet future challenges associated with positive longer termed adaptation. McCubbin et al. (1999) were distinctive in their family resilience writings for making cultural diversity central in understanding challenges families faced. Patterson (2005) applies the FAAR model to explore how family-meaning making promotes coping with a child’s chronic illness.

Walsh’s (2006) three-tiered theoretical model of family resilience emerges from a family systems and health perspective and interest in normal family processes as families face both anticipated and unexpected challenges throughout the family life cycle. Her family resilience framework highlights three factors: (1) belief systems, or how families view their circumstances, (2) organizational patterns, or how families are structured, and (3) communication, or how families problem solve relative to the adversities in their lives. Walsh theorizes that belief systems primarily impact family resilience through shared meaning-making processes, collective revisioning and renewal of hope, and spirituality. Organizational patterns primarily impact family resilience through flexible family structures such as family routines and rituals, family connectedness, and mobilization of extended kin and social and economic resources. Finally, Walsh theorizes that communication can promote resilience through effective and trusting emotional sharing and collaborative problem solving. Overall, Walsh’s model uses a strength-based ecosystemic lens to identify how families mobilize individual, interpersonal, and community resources to grow and even flourish in responding to adversities. Her work also incorporates a family life course perspective, looking at how families “bounce forward” and re-organize so as to protect ongoing shared development.

Black and Lobo (2008) conducted a conceptual review of the family resilience construct within interdisciplinary social science and health literatures, recommending areas of assessment and intervention for family nursing practice. They note that the family resilience literature has not offered a measurement of the construct, in part because positive family adaptation draws from multiple levels of family ecology difficult to capture in a single scale. They distill a set of resilient family characteristics which include: positive outlook, with qualities of confidence, optimism, and humor; spirituality as a shared source of meaning for stressors; family member accord, with qualities of cohesion, nurturance, authoritative discipline, and avoidance of hostility and conflict; flexibility with stable family roles responsive to situational and developmental change; family communication, characterized by clear open emotional expression and collaborative problem solving; financial management, including both competence and family warmth in the face of financial problems; family time, making the most of togetherness with daily tasks; shared recreation, which reinforces cohesion, adaptability, and learning; routines and rituals, activities promoting close family relationships and stability during crises; and support networks for sharing resources outside the family. Their review emphasizes the importance of assessing tasks of everyday life to ensure they remain stable sources of family organization and provide opportunities for conveying positive emotions.

In her mixed-methods study of family resilience, Lietz (2006) interviewed six resilient families selected from a large survey who scored high on measures of risk and on positive family functioning. She used the qualitative method of narrative reconstruction to develop a model of family resilience, highlighting five evolving stages: (1) survival, (2) adaptation, (3) acceptance, (4) growing stronger, (5) helping others. In addition, she identified ten protective factors, including: (1) morality/spirituality, (2) taking charge, (3) external and internal social support, (4) communication, (5) boundary setting, (6) creativity/flexibility, (7) humor, (8) insight, (9) appraisal, and (10) giving social support.1

Complementing family resilience perspectives, Parke (2004) reviews family development research noting three areas of systematic study that demonstrate a significant impact on positive family adaptation: (1) family myths, (2) family stories, and (3) family routines and rituals. Parke describes myths as enduring stories and beliefs passed on relatively unchanged and influencing family processes through communication of deeply rooted cultural values, providing continuity across generations. Family stories, in contrast, offer foundations for collaborative problem solving, as family members participate in and contribute to story development. Kiser, Baumgardner, and Dorado (2010) underscore the healing power of collaborative family storytelling in overcoming legacies of trauma by encouraging multiple perspective taking and empathic listening and providing intergenerational support.

Decades of research on routines and rituals have suggested the important role these aspects of family life can have on family resilience (Fiese et al., 2002). Routines involve specific time commitments and are repeated over time, meeting primary needs while providing stability and conveying care and affection. Examples of family routines include activities such as dinnertime and bedtime practices. Rituals, on the other hand, involve rich symbolic communications and provide ceremony connecting the present to past legacies and future possibilities. Rituals provide meaning to family interactions and can come in the form of family gatherings or celebrations such as holidays, traditions such as birthdays, and transitions and rites of passage such as weddings and funerals. Fiese’s review highlights the health-promoting aspect of routines and rituals as indicators of family values, organization, and communication, preserving basic survival practices while conveying positive feelings of commitment and belonging vital to coping with hardships. Indeed, one focus of the literature on family resilience and chronic illness examines how families protect existing and create new routines and rituals to meet illness demands, creating new stabilities, opportunities for renewal, and images of the future in responding to both initial diagnosis and continuing disruptions and losses.

Family Resilience and Chronic Illness

While the broad research literatures on family resilience in response to stressors or crises yield valuable insights into family responses to crises of health, chronic illness as a family stressor presents highly specific demands and immediate challenges in creating a “new normal” while accommodating an evolving illness experience. In the family resilience and chronic illness literature, Rolland and Walsh (2006) offer a perspective on family resilience in response to childhood and adolescent chronic illness, synthesizing Rolland’s family systems-illness model (1994) and Walsh’s family resilience model (2006). In his family systems-illness model, Rolland argues that understanding family responses to chronic illness begins with what he terms the “psychosocial characteristics” of the illness, its medical qualities, and course—which can be progressive, constant, or relapsing/episodic, the degree of disability or impairment, and the specific treatment demands and prognosis as they impact on the individual and family. As a second dimension, psychosocial illness characteristics impinge on ongoing family life course and developmental processes. As a third dimension, Rolland suggests that family cultural and illness beliefs shape how families respond to the psychosocial demands of illness and integrate them into ongoing family development. In considering family responses to a chronic illness, the authors apply Walsh’s multidimensional family resilience framework, highlighting the three key domains of family belief systems, organizational patterns, and communication and problem solving. These domains can be usefully applied in identifying resources promoting family resilience when facing the highly specific stressors presented by psychosocial illness characteristics as they interface with family life cycle demands. Integrating these two models offers a valuable framework for understanding family responses to a chronic illness diagnosis and its evolving course, beginning with realistic illness demands and specific ways these may challenge and nurture family strengths and resilience resources. Rolland and Walsh’s useful synthesis highlights that family resilience in chronic illness care must begin with the best possible understanding of diagnosis and underlying medical condition, its impact and course, and its potential treatment.

Lee et al. (2004) present a conceptual framework for understanding family resilience in response to a chronically ill child, based on a review of characteristics identified in the family resilience literature, interviews with 11 parents of a chronically ill child in the pediatric oncology unit of a hospital in South Korea, studies of family resilience in maternal chronic illness, and synthesis of concepts from these sources. Their conceptual review suggests that chronic illness can be understood as a family stressor, with dimensions of family resilience buffering stress in ways that preserve critical domains of family functioning, including affective, structural, control, cognitive and external relationships. Their mapping of family resilience characteristics is congruent with the literature review in most instances, though some intriguing differences in emphasis emerge. Congruent areas of family resilience they identified included intrinsic family characteristics (coherence, faith, positive outlook, mature thinking, and family self-esteem); family responsiveness to stress (adaptability, desire to maintain normal states, patience for attainment of goals, ability to control stress, readiness to accept critical situations, and responsibility for causing trouble); and family member orientation (flexibility in reorganizing the family, attachment among family members, open communication and emotional expression among family members, mutual understanding, and maintaining balance in family member demands). Lee et al. (2004) highlighted a dimension termed externally directed as strongly represented in their interviews, but not emphasized in the published literature. The externally directed dimension included economic resources, pro-activeness toward information, maintaining cooperative relations with health care professionals, ability to maintain good social relations, and family member leadership in connecting to external resources. They proposed that for Korean families, extended family networks are especially important for family support as well as in mobilizing external resources. Because most of the published literature has focused on family responses to generalized stress rather than chronic illness coping, they suggest their family interviews may have elicited greater emphasis on the importance of externally directed family resources in illness settings. Other dimensions, such as recognizing the support and leadership of family elders as brokers to the outside world of resources, may be more salient for Korean and other collectivistic cultures yet also may illuminate the value of extended families and filial respect as resilience resources for all families.

Rosenthal et al. (2009) explored family resilience in adaptation to chronic illness and disability through the McCubbin et al. (1999) Resiliency Model of Family Stress, Adjustment and Adaptation reviewed earlier. In applying this model, these authors emphasized the importance of focusing on the configuration of stressors and resources contributing to longer term adaptation, rather than immediate, reactive adjustment to the demands of stressors and drawing on existing coping patterns without major change. Rosenthal and colleagues emphasize that while burdens of chronic illness and disability can lead to strains and maladaptation, successful coping with these challenges can lead to significant growth and maturation or “bonadaptation.” The risk factors they identify include characteristics of the illness such as diagnosis, visibility, and severity; functional independence; and psychological stress due to disability related problems or daily hassles associated with the illness and impairments. They identify resistance or protective factors including stress processing, appraisal, and coping strategies; individual factors including temperament, competencies, and self-efficacy; and socioecological factors including family environment, social supports, and practical resources. They also highlight the importance of family-based peer social support, that is, families sharing experiences, supportive resources, and coping strategies in struggling and coping with illness and disability.

Ungar (2005, 2010, 2011) presents a cultural perspective on family resilience emerging from work with youth at risk for mental health problems. His approach highlights experiences of oppression and discrimination experienced by African American and other families, and the important role played by families in protecting children from the destructive impacts of inequality by educating them to be critically aware ­navigators of their social environments to safely access resources. Further, he notes that culturally diverse groups have culturally meaningful preferences for valued resources, and clinicians working with diverse families need to learn to negotiate these worlds and become advocates for culturally meaningful resources, ensuring that social environments respect cultural preferences.2 In health care settings, culturally meaningful negotiation of resources can include strong preferences for family accompaniment and inclusion where Western norms would favor greater individual privacy or integration of culturally and spiritually based healing practices.

As noted throughout this review, multimethod family resilience research contributing to theoretical synthesis and practice applications requires assessment of variables including resilience processes and desired health and mental health outcomes. While the field of family resilience has not generated a psychometrically reliable and valid scale measuring this construct, useful psychometrically tested instruments can be found in the broader field of family health and mental health assessment. Alderfer et al. (2008) conducted a literature search and a Division of Pediatric Psychology expert review of observational and self-report family assessment tools relevant to pediatric chronic illness from general family assessment, dyadic assessment, and child chronic illness care. Scales measuring constructs found in the family resilience literature designated well established include Fiese et al.’s observational coding of narrative coherence and relationship beliefs (Pratt & Fiese, 2004) and McCubbin and McCubbin’s (1999) self-report Coping Inventory for Parents, with items measuring Family Integration, Maintaining Social Support, and Medical Communication and Consultation in responding to a child’s chronic illness. Additionally, key variables contributing to family resilience include measures of dyadic functioning in couples, parent child, and sibling relationships and may be useful in exploring research questions such as couple’s coping with chronic illness over time (Berg & Upchurch, 2007). In the adult resilience literature, Freiborg, Hjemda, Rosenvinge, and Martinussen (2006) have constructed an ecosystemic scale with individual characteristics such as optimism and self-efficacy, as well as key contextual variables of family cohesion and social support. Observational measures are time and resource intensive, but focus on family variables directly. Self-report measures of family functioning may ask individuals to report for the family as a unit, or collect this data from multiple family members, sometimes aggregating results or computing correlations indicating degree of agreement. Given these measurement challenges, and adding these to challenges of research design in studying dynamic, ecosystemic processes prospectively, qualitative research complements quantitative approaches with valuable insights into family experiences and adaptive coping.

Family Resilience and Specific Chronic Illnesses: Selected Review

The construct of family resilience is increasingly used to study specific illnesses in both child and adult literatures, arguing that attention to positive family processes promotes both positive health outcomes for affected individuals and positive mental health outcomes for families. While a full review is beyond the scope of this chapter, highlights from this literature suggest important future directions for research and practice. One pioneering family therapy work focusing on infected adults in the early HIV/AIDS epidemic was Gillian Walker’s In the Midst of Winter: Counseling Families, Couples and Individuals with AIDS infection (1991). She described her work with families in the Bronx experiencing adverse ecologies associated with specific pathways of infection, including men who had sex with men, intravenous drug users, and the incarcerated, relative to what at that time was a devastating stigmatized illness and death sentence. Walker used a compassionate systemic and narrative therapy approach emphasizing family perspectives on suffering and problem-solving strategies, identifying the considerable strengths clients brought to coping. Currently, HIV/AIDS has been transformed into a chronic illness for all those with access to treatment. With roots in advocacy for disproportionately affected sexual minorities and racial and ethnic minority communities, the HIV/AIDS field has used socially informed ecosystemic and participatory approaches to care. Swendeman, Ingram, and Rotheram-Borus (2009) synthesize literatures on chronic illness self-management in the three categories of physical health, psychological functioning, and family/social relationships, exploring specific themes in application to HIV/AIDS. They note that unique family issues include challenges of disclosure and secrecy regarding gender and sexualities, which can be especially sensitive for serodiscordant couples or those experiencing stigma due to racial or religious discrimination.

The study of family resilience in response to asthma has been the focus of a substantial family health literature. In a 2008 special issue of Family Process, editor Fiese (2008) suggests that the study of asthma highlights general systems topics such as integrating individual needs into the family group, developmental trajectories of risk and resilience, family interaction patterns that can be constructive and supportive or burdensome and destructive, and cultural adaptation required for effective family care. Since 2008, the national burden of asthma has increased, affecting 1 in 10 children and 1 in 12 adults, and disproportionately affecting children living in poverty and ethnic minority children, adults, and families. Asthma is a condition that often can be controlled with a combination of medication and avoidance of environmental triggers, requiring a high degree of cooperation and control and affecting the lives of family members. Asthma is also very sensitive to emotional stressors with a strong mind/body dimension, and historically literatures in family health psychology over-emphasized dysfunctional family patterns such as conflict or over-control. The literature on family-based responses to asthma offers good examples of transformation from decontextualized family blaming to an emphasis on family strengths and the need for systemic supports in coping with challenges, recognizing the unique burdens for families living in poverty or coping with racism and discrimination who are disproportionately affected. Fiese, whose research focuses on family rituals and routines (Fiese et al., 2002) and family narratives in everyday life and in family illness (Pratt & Fiese, 2004), has explored how asthma disrupts daily routines including sleep as well as family caretaking demands (Fiese et al., 2008). They found that the mother’s experience of caretaking burden in carrying out routines of everyday life demanded by asthma care could negatively affect family interactions, which in turn increased child anxiety and negatively affected child and family quality of life. Wamboldt et al. (2008) explored negotiations in families with an asthmatic child and an adult who smokes, noting the importance of realistic understanding of smoking as an asthma trigger. Recommendations for interventions emphasize family, school, and community-based psychoeducational approaches educating children and families about realistic illness and wellness management, while also improving family communication, protecting daily routines and rituals, and reducing conflicts along with promoting sharing of positive emotions.

Both child and adult chronic illness can disrupt family routines and rituals. Buchbinder, Longhofer, and McCue (2009) work with families where an adult has cancer, focusing on how this illness disrupts family routines and rituals. They conducted a qualitative study of families with young children and a diagnosis of cancer in one of the parents, requiring re-organization of family life to accommodate invasive, exhausting, and time-consuming treatments. Their study documented the extraordinary creativity and resilience with which adults as partners considered the needs of the cancer patient and the needs of their young children (ages 2–9). Despite significant upheavals in their family lives, these adults were sensitive to the impact of these disruptions on their children, and made meaningful choices such as timing chemotherapy to preserve family routines at meals and bedtimes, or including children in ritualizing medical milestones. Families were also creative in incorporating new family routines including hospital visits and recovery from surgery or chemotherapy, giving children opportunities to understand and contribute to care. The authors note that cancer can pull families apart, yet also offers experiences that can strengthen families and bring them together. This work illustrates how broad family resilience-building principles need to be specifically anchored in illness demands and family characteristics for unique individuals and families.

Retlaff (2007) explored resilience-related narratives of two-parent families with a child living with Rett’s syndrome, a neurogenetic disorder primarily affecting girls and resulting in severe neurological disability as well as chronic illness. Drawing from a quantitative survey sample of 50 families recruited through a parent self-help organization, they used scores on Antonovsky’s Family Sense of Coherence Scale (Antonovsky and Sourani, 1988) to select 6 families, 3 in the highest scoring and 3 in the lowest scoring quartiles, conducting home interviews with both parents. In the group reporting high coherence, narratives they termed “Story of the Refound Balance” emphasized the value and positive meaning of being able to rise to the demands of their special needs child. These families told stories of striving for balance in their family lives, finding ways to care for themselves and each other, feeling closer as a couple, and experiencing enhanced development as a person “with a big heart for people with disabilities.” In the second type, termed “Story of the Long Tedious Walk Uphill,” families told a story of a child-focused family experiencing significant burdens due to their child’s needs, but finding comfort and pride in rising to these challenges. This group conveyed a greater sense of personal deprivation, and wives described “being like a single mother.” Families who “refound balance” reported good support from friends as well as each other, whereas more burdened families described less support from both family and friends. Burdened families anticipated greater future problems, whereas “refound balance” families used the phrase “she is just my child” to signal greater acceptance. While five of the six families had other children, siblings were not mentioned in family themes. Bellin and Kovacs (2006) review the literature on siblings of youths with chronic illness, noting that siblings are overlooked in research and clinical interventions yet face unique stressors due to illness demands as well as growth in competencies. They recommend a multisystemic approach nurturing sibling disease knowledge and personal competencies, addressing common misconceptions and emotions including guilt and fears, and enhancing family and peer communication and support.

Although Rett’s syndrome is a rare illness, Retlaff’s (2007) work complements and illuminates family resilience processes for other families coping with a child’s disability, including autism and other developmental disorders. Levine (2009) describes resilience narratives and strategies of 15 single mothers coping with a child’s chronic disability. These included shifting from received social and medical information to empowered, authoritative knowledge, transforming definitions of themselves from inadequate to successful caretakers, and refusing to define their children as “disabled” in ways that were stigmatizing and obscured their humanity and strengths.

Implications for Theory, Research, Practice, and Policy

This chapter’s reflexive synthesis across multidisciplinary literatures suggests some exciting new developments furthering the field of family resilience and health, within both family systems and ecosystemic health promotion practice. Synthesizing ecosystemic family resilience frameworks using participatory and inclusive methods that incorporate ethical lenses on the consequences for shared development and on empowerment and resource rights offers a more multifaceted understanding of the family dialogues, social contexts, and cultural beliefs and practices permitting families to mobilize resilience resources when facing chronic illness. This integration suggests new directions for research/practice partnerships that recognize the continuum of ecosystemic stresses and frameworks for responsive health- and growth-promoting ­interventions. Kazak (2006) and colleagues propose a pediatric psychosocial preventative health approach to collaborations in pediatric family systems medicine, using a social ecological model with public health prevention to identify resilient and at-risk families facing specific challenges of pediatric illness. They suggest that most families confronting pediatric illness are “distressed but resilient,” meeting criteria for “universal” care including education and family-to-family parent and sibling support reinforcing competencies. At the same time, some families experiencing acute distress with some risk factors can be offered “targeted” or brief interventions addressing distress while also working to reduce identifiable risks within the pediatric care setting. The smallest group demonstrating highest distress with high risk factors considered a “treatment” group can be offered specialized behavioral health care. Kissane and Hough (2011) propose a similar intervention approach for families experiencing adult cancer based on research identifying risk and resilience factors. Their brief therapy program offers stepped interventions supporting family cohesion and communication while reducing conflict and isolation. These integrative health promotion/prevention/intervention models emphasize the importance of conducting multifaceted family assessments and individualized interventions to reduce distress, disruption, and conflicts while mobilizing positive resources including health care and community resources, family-based peer support and education, as well as more traditional family therapy when needed.

This review suggests an important role for ethical and social justice perspectives in supporting family resilience. The lens of intergenerational family ethics offered by contextual therapy (Boszormenyi-Nagy & Krasner, 1986) complements work in family systems and resilience by specifically addressing family fairness in chronic illness care as it impacts posterity. Contextual therapy uses philosopher Martin Buber’s principles of I/Thou relationships and dialogues of mutual empathy to explore the fairness of intergenerational give and take in light of historical and current contexts of suffering as well as their future consequences for all affected. This approach helps us evaluate fairness and balance in family responses to chronic illness and guides communication by recognizing differences and evaluating the consequences of family adaptations in the future. If a parent decides to keep a stigmatized illness secret, or to focus on a sick child at the expense of a partner or siblings, he or she can be helped to better understand histories and current circumstances as well as individual and family consequences. Siblings can be acknowledged as family helpers without having their own lives and needs completely consumed, and their relationships with their parents can be strengthened by more open communication and problem solving of divergent needs. Applying ethical and empowerment perspectives supporting family articulation of desired goals and resource navigation and advocacy, we can help families access social resources that create new contexts more conducive to experiencing and expressing positive emotions, addressing conflicts in culturally congruent, constructive ways, and affirming family intimacy. Mobilizing resources supporting desired goals, families can better co-create more positive and hope-filled family narratives, preserve family routines and rituals with energy and affection, and empathically attend to others in the family, offering more help to an exhausted, resentful overextended spouse, a frightened or burdened sibling, or a chronically ill member concerned with his or her growing dependence and family burden. Including family and social ethical perspectives also contributes to culturally sensitive assessments of shared understanding of the illness and its course, attention to shifts in family practices due to the realities of the illness, and attention to nurturing and strengthening ties with extended families and social networks.

Family experiences of chronic illness differ in impact depending on whether one or more children or adults are affected, their ages and family life cycle stages, and tasks of everyday life intertwined with chronic illness experiences and treatment demands, which may require complex medical management such as HAART protocols for HIV/AIDS or dietary restrictions for diabetes management to prevent disease progression. Restorative sleep and nutritious meals vital to health can be challenging to achieve when ­physical pain, disruptive medical procedures, and guilt or fear intrude on family routines. While multisystemic health approaches are well established in pediatric care literatures, the importance of relationship support and positive emotions in health is leading to greater recognition of family factors in adult health psychology literatures (Barskova & Oesterreich, 2009; Stanton, Revenson, & Tennen, 2007; Swendeman et al., 2009). Chronic illness self-management, based on a patient-centered perspective on resources supporting self-efficacy, has the potential for integration with a family systems and health perspective. A family-centered approach to disease management is emerging, primarily among family advocacy groups (Rosenthal, 2009). Intergenerational health promotion and resilience perspectives will become even more important as extended families share experiences of co-occurring disorders in multiple family members.

Further, it is important to evaluate how family cultural and spiritual illness beliefs complement or contradict provider understandings and recommendations for care, to conduct culturally and spiritually competent assessments, and to create meaningful partnerships for care both within and outside the health care system. The clash between diverse cultures and the “culture of medicine” is explored in Fadiman’s (1998) compelling account of a Hmong family’s experience seeking care for their young daughter Lia and the difficult attempts to control epilepsy. In The Spirit Catches You and You Fall Down she explores clashing cultural beliefs and miscommunications regarding the child’s illness, which tragically interfered with her health, while signaling places where bridges were possible. Fadiman recommends Arthur Kleinman’s cultural interview (Kleinman, 1988), exploring the family’s culturally based understanding of the illness as offering a very different starting point for culturally sensitive care. Encouragingly, this text has become required reading in provider training programs because it offers a multifaceted understanding of family cultural and spiritual beliefs as they clash with the “culture of medicine,” and ways providers can grow personally and professionally in learning from diverse families to offer sensitive chronic illness care.

In health care systems that emphasize individual illness and compliance with medical authority, implementing family resilience perspectives requires alliances and partnerships specific to the research and practice setting. This chapter’s reflexive synthesis offers a guide in evaluating the key components of the research approach or intervention perspective offered from within a particular discipline or setting. Does the approach focus specifically on family relationships, and does it consider meaningful subgroups such as couples, parents/children, and siblings? Does assessment include tools for sensitively eliciting perspectives of patients, family caretakers, and directly involved providers? Does the approach consider life-course developmental concerns in cultural context, their spiritual and sociopolitical components, and potential differences in acculturation within the family? Does the approach train practitioners to conduct cultural and spiritual inquiries through dialogues and personal reflection? Does it provide institutional support for interdisciplinary partnerships promoting access to needed resources? These questions facilitate use of ecosystemic and participatory approaches in developing interventions nurturing family resilience and wellness in chronic illness settings. Because both the families we encounter in diverse settings and the specific demands of chronic illness are complex and evolving, it becomes challenging to translate research into practice responsive to the family’s unique circumstances. Some practitioners work in specialized health settings such as pediatric cancer wards or adult pain clinics, while others work in primary care or community health and mental health practice settings. Implementing resilience-building recommendations in practice will always require individualized family-based assessments sensitive to settings, timing in the ­illness trajectory, timing in the family’s shared life course, and interdependent developmental consequences. This work is best conducted through interdisciplinary partnerships for referrals and follow-up.

Collaborative family-based assessment is foundational to nurturing family resilience. Regardless of family and practice contexts, the family assessment presents us with opportunities to explore family-centered quality of life in light of lived experience of the illness and its consequences. Falicov (2000) suggests that in culturally informed, multisystemic interventions, family therapists join with families in co-creating a new, more favorable “ecological niche” for shared development. Multifaceted assessments will include the family’s understanding of the illness and the resource demands the illness places on their everyday family lives. Assessments will require sensitive interviewing regarding the impact of the illness on individual family members, beginning with the biological demands of the illness itself for the suffering individual and for family caretaking.

Boszormenyi-Nagy’s intergenerational family ethics in contextual therapy (Boszormenyi-Nagy & Krasner, 1986) can be useful in working with families using “multidirected partiality,” that is, connecting empathically with all members while exploring issues of family fairness in family give and take as a result of both developmental and illness needs. Also useful at the evaluation phase is goal-oriented assessment, asking family members what they would like to accomplish individually and collectively, and using these goals for continuous evaluation of progress toward desired outcomes. Literatures reviewed in this chapter suggest that family narratives offer powerful tools in sustaining family connections and in navigating resources that transform illness into meaningful journeys filled with possibility and purpose even when facing enduring losses. From the moment we initiate conversations with families we co-create a new story, and the way we tell it together will have a powerful impact. Family therapy has rich, strengths-based narrative traditions showing us how to listen for family strengths that promote resilience from the beginning (Allison et al., 2003; Madsen, 2009; White, 2008). However, the illness-specific resilience literature also suggests that assessments must include what Rolland and Walsh (2006) term the “psychosocial characteristics” of the illness itself. It is especially important for assessments not to rush families toward a positive or strengths-based account at a point when they are grappling with fear and pain. Rather, we listen from the outset with our human as well as our professional recognition of suffering and its family challenges. At this phase we also become alert to differences and potential conflicts within the family. Strengths-based assessments help us evaluate family communication regarding the illness, its meanings, the challenges it presents as well as the opportunities for shared empathy, positive emotions, and mutual support. Exploring differences and arriving at mutual understandings can lead to negotiations of differences in ways that can lead to new problem-solving strategies, shifting family practices to better nurture family resilience. Promoting family resilience requires hearing from all affected, respecting culturally based gender and generational expectations, while giving all, including chronically ill members and young children, opportunities to both give and receive support. Finally, family resilience frameworks emphasize ways practitioners can assist families as they navigate and negotiate critical resources, recognizing that families with adequate material resources and extended family and social support can better mobilize resilient adaptive strategies within the family.

The importance of patient-family and community-centered health education promoting empowerment emerges across literatures, emphasizing the need to link knowledge to resource advocacy. Interventions can become spaces of mutual learning ensuring that families understand the illness, its individual and family impact, and available resources. The literature also guides us to use family-to-family supports in helping family members navigate illness demands and mobilize resources for hope and recovery. One exciting new resource emerges in increased access by chronically ill and their families to internet-assisted and social-networking based mutual help and advocacy (Bacigalupe, 2011; Fox & Purcell, 2010; Nicholas, 2010). Fox and Purcell (2010) found disproportionate barriers to internet access for the chronically ill, but note its growing use by this population and powerful ways to gain and share information while building connections. Bacigalupe and Nicholas both note that family peer-to-peer education, support, and advocacy can be enhanced as social networking tools help families progress from relatively passive though valuable health information navigation to family-centered, empowered mutual support and shared advocacy.

Conclusion

This review of research on family resilience as it contributes to chronic illness care suggests the need for interdisciplinary, mixed-methods research incorporating global perspectives on health promotion and including families themselves in creating and reviewing the knowledge base for care. With collaborative care partnerships and family-centered goal-oriented assessments, families themselves will identify areas of concern. Clinical practice promoting family resilience in chronic illness care is based on developmentally informed family systems and health perspectives, while integrating work from narrative, co-constructionist, and meaning-making approaches to individual, family, and community-based practice (Pare & Larner, 2004; White, 2008); from culturally and spiritually informed, ecosystemic treatment approaches in family therapy linking individuals, families, and communities (Bernal, 2006; Falicov, 2000; Landau, 2007; Lightburn & Sessions, 2005; Madsen, 2009); and from positive psychology and posttraumatic growth orientations (Chou, Lee, Datalano, Ditchman, & Wilson, 2009; Layne, Warren, Shalev, & Watson, 2008; Lindey & Joseph, 2008; Snyder & Lopez, 2009). Individualization of ecosystemic intervention principles helps resolve tensions between the use of specific empirically supported treatments and attention to meaningful common factors from positive development, health promotion, and treatment literatures (Shapiro, 2008a; Sprenkle, Davis, & Lebow, 2009). Henggeler’s Multi-Systemic Therapy, developed for home-based treatment of youth with conduct disorders, implements individualized ecological assessment for a diagnosed condition using evidence on the continuum of symptom specific as well as broad health and growth promotion processes. Emphasizing empowerment partnerships and linking of multisystemic resources, they use best available research to reduce youth symptoms such as anger management, resolve family problems such as parental substance abuse or discord, and enhance positive developmental resources including family support and school success (Henggeler et al., 2009).

Partnering with families requires that we become reflective practitioners rigorously exploring our own biases based on research and practice training as well as personal, social, and cultural perspectives (Shapiro, 2008b). Aware of our own dilemmas in living with illness, and barriers we confront even with professional prestige and knowledge, we can better understand and partner with diverse families, empathize with their considerable challenges, nurture their inspiring resourcefulness, and advocate for needed change in systems of care. We begin by listening deeply to multifaceted family experiences of illness and wellness, looking broadly at the knowledge base, addressing symptoms while promoting health, and sharing these in accessible ways, critically examining access barriers, and joining with others in advocating for universal access to care for illness and opportunities for wellness. This work also requires that we expand our roles, becoming teachers and advocates as well as researchers and providers. One important strategy for revisioning care will be education and training of all sectors of society. The public and policy makers, as well as health researchers and providers, will need to evaluate health information critically, assessing barriers to change. The Center for Advancing Health offers one example of a health information clearinghouse focused on behavioral health and promoting patient engagement, equity, and policy change through knowledge of the evidence base. The Center’s founder, Gruman (2007), has written about her own struggles with acute and chronic illness as inspirations for her work.

When we begin our work with what families know and what families need, we shift the way we ask questions and build knowledge. Using this lens, we can design interventions that offer comfort and reduce distress while also going ­further in building on strengths and expanding resources, relationship processes, and capacities that promote wellness and support growth. Family resilience in response to chronic illness recognizing our human interdependence and its consequences requires shared learning, emotionally based communication, and positive activities associated with sustaining everyday family lives and future plans. Treatment targeting illness symptoms and reducing suffering will be more effective with greater attention to family emotions, meanings, and goals, making chronic illness one factor among many rather than overwhelming family life. This approach to assessment and intervention makes the most of the “ordinary magic” promoting positive adaptation to change throughout the life cycle, while recognizing extraordinary capacities for health and growth in the face of challenges that can be nurtured by our family relationships.

Footnotes

  1. 1.

     For more on this topic, please see  Chap. 10 .

  2. 2.

     For more on this topic, please see  Chap. 9.

Notes

Acknowledgments

Work on this chapter was supported by the NIH Research Grant 5-P20-MD002290-05, HORIZON Center: Healthy options, research, interventions & community organizing funded by the National Institute of Minority Health and Disparities (NIMHD).

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© Springer Science+Business Media New York 2013

Authors and Affiliations

  1. 1.Department of PsychologyUniversity of MassachusettsBostonUSA

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