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Advancing the Family Management Style Framework: Incorporating Social Ecology


Lamia P. Barakat Journal of Family Nursing 2012 18: 5 DOI: 10.1177/1074840711430665 The online version of this article can be found at: http://jfn.sagepub.com/content/18/1/5

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30665BarakatJournal of Family Nursing The Author(s) 2012 Reprints and permission: http://www. sagepub.com/journalsPermissions.nav

JFN18110.1177/10748407114

Guest Editorial

Advancing the Family Management Style Framework:

Journal of Family Nursing 18(1) 510 The Author(s) 2012 Reprints and permission: http://www. sagepub.com/journalsPermissions.nav DOI: 10.1177/1074840711430665 http://jfn.sagepub.com

Incorporating Social Ecology


Lamia P. Barakat, PhD1

Keywords Family Management Style Framework, childhood chronic health conditions, social ecology theory Deatrick and Knafl are to be commended for supporting refinement of the Family Management Style Framework through their own review of the literature and putting forward the manuscripts in this special issue. Through this special issue, Deatrick and Knafl encourage application of the Family Management Style Framework to new populations and situations, identifying areas for future study. The research represented within these manuscripts in this succeeds in testing the Family Management Style Framework, underscoring the Frameworks adaptability across the lifespan and generalizability to new chronic health conditions (involving physical and cognitive areas of function) and situations in the course of treatment. Knafl, Deatrick, and Havill (2012), in their review of 64 studies using the Family Management Style Framework, summarize findings that support the Framework while pointing to the emerging contextualization of the

The Childrens Hospital of Philadelphia, Philadelphia, PA, USA

Corresponding Author: Lamia P. Barakat, PhD, Director of Psychosocial Services in Oncology, The Childrens Hospital of Philadelphia, Associate Professor, Perelman School of Medicine of the University of Pennsylvania, Division of Oncology, 3501 Civic Center Blvd., 10303 CTRB, USA Email: barakat@email.chop.edu

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Journal of Family Nursing 18(1)

Framework to include sociocultural influences on family management such as social and financial resources and health care and education professionals. The manuscripts in this special issue demonstrate the importance of considering contextual factors or the patient and familys social ecology (Kazak, 1997) in understanding family management components (definition of the situation, management approach, and perceived consequences), dimensions (e.g. child identity, view of condition, parental mutuality, parental philosophy, family focus), and family management styles. Social ecology theory conceptualizes multiple, reciprocal, positive and negative influences on child and family development and functioning and considers change over time. Themes identified across special issue are consistent with social ecology theory in terms of application of the Family Management Style Framework across the stages of development (i.e. the lifespan) and differing chronic health conditions and health care treatment decision points (e.g. management of children in palliative care, management of older adults with dementia, family management applied to end of life decision-making and grieving families). Consistent with social ecology, proximal contextual influences include the chronic health condition (Beeber & Zimmerman; Blythe, Rempel, Rogers, & Ravindran; Bousso, Misko, Mendes-Castillo, & Rosssato; Wiegand), family characteristics (Beeber & Zimmerman; Bousso et al.; Wiegand; Wollenhaupt, Rodgers, & Sawin), and treatment environments (Blythe et al.; Bousso et al.) while distal influences comprise social, school and workplace networks (Beeber & Zimmerman; Wiegand; Wollenhaupt et al.), socioeconomic resources and cultural factors (Bousso et al.). For example, Bousso and colleagues (2012) highlight aspects of Brazilian culture that complicate family management in the context of palliative care of children in the home including expectations that the mother is the primary and sole care provider. The demonstrated adaptability of the Family Management Style Framework through the research represented in these manuscripts addresses recent calls for family assessment approaches that are inclusive of the diverse contexts of chronic health conditions (Barakat & Alderfer, 2011). Understanding family management is enhanced by expanding perspectives on family management to encompass the patient and caregivers other than parents (Beeber & Zimmerman; Wollenhaupt et al.). Most frequently in prior literature, family management has been described from the perspective of the primary caregiver through qualitative interviews. Parent mutuality begins to address multiple caregivers acting in concert (or not) to manage their childs chronic health condition and has been assess through mother and

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Barakat

father reports (Knafl, Deatrick, Gallo, Dixon, Grey, Knafl et al., 2011). The manuscripts in the special issue raise the importance of identifying mutuality of multiple caregivers who may be in different types of relationships with the patient such as daughter and granddaughter (Beeber & Zimmerman) and siblings or spouses (Weigand) and considering the patient and caregiver in mutuality around family management (Wollenhaupt et al.). Also, professional caregivers become part of the familys management, which presents an expansion to the Framework. The manuscripts in this special issue highlight the importance of redefinition of mutuality to address multiple caregivers who come together to management a chronic health condition. Another consideration is inclusion of perspectives of older adults who are in early stages of dementia (and other patients who participate in their care such as adolescents) and can provide input into how the family manages current needs and prepares for future management as the chronic health condition progresses. Multiple perspectives on family management highlight variations in family roles and expectations, the ways in which family management may modify family roles from the expected caregiver relationships (such as a granddaughter caring for her grandmother) and influence difficulties or resiliencies in family management. Further, expanding the definition of mutuality points to role of developmental level of the patient and of the family (Beeber & Zimmerman; Wollenhaupt et al.), encompassing similarities and differences in family demands for newborns, young children, adolescents, or adults with chronic health conditions and family management variations based on developmental needs. Concepts and dimensions of family management will differ depending the need to negotiate patient autonomy and independence (i.e. self-care) with family care in order to maintain consistent care. For instance, the ability of adolescents to engage in self-care from a cognitive, emotional, and behavioral perspective is emerging while these same skills are declining among those with dementia, creating ambiguity in terms of self-management and challenges in terms of negotiating parent-child relationships and management in the family context. Similarly, family management may be particularly challenging when families are early in their family life cycle in terms of taking on caregiving roles (birth of children) or facing the death of the elder generation. Family management in context of life threatening illness and palliative care is another theme (Blythe et al.; Bousso et al.). Both of these manuscripts involve children--children with uncertain life expectancy and adolescents with life-threatening conditions in palliative care. One represents parents

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Journal of Family Nursing 18(1)

preparing for death of a child as the last phase of a chronic health condition (Bousso et al., 2012) and the other represents families grappling with management as they adjust to being new parents and create an attachment to a medically involved newborn (Blythe et al.); thus highlighting how family management may be influenced during early periods of both the child and familys development. These manuscripts also underscore the role of dimensions of the chronic health condition (in this case severe, lifespan shortening, and uncertain course). This theme is further explored in Wiegands (2012) study of grief after sudden illness and death of a family member, suggesting that preparation for death and grieving bring new dimensions to family management and family management styles under the Framework. Three papers in the special issue employ secondary analyses of data from parent studies to apply the Family Management Style Framework to new populations and situations (e.g. Beeber & Zimmerman; Blythe et al.; Wallenhaupt et al.). This approach has raised a number of intriguing questions regarding possible modifications to the Framework for populations or situation that differ from management of children with chronic health conditions. To further explore findings of these studies, it will be important to develop studies with specific aims of examining family management using the Family Management Style Framework and specifically examining contextual factors or the patient and familys social ecology. Using mixed methods by incorporating quantitative methods will further this line of inquiry. Development of the Family Management Measure (Knafl et al., 2011) facilitates advancement of the Framework using mixed methods approaches. Prospective designs allow identification of predictors of change and maintenance of family management style over the course of time, development, and the chronic health condition (such as change in severity, course, and treatment demands). Blythe and colleagues (2012), using a cross-sectional design sampling families at different points in an infants treatment for hypoplastic left heart syndrome, demonstrated consistent variations in family management depending on stage of treatment. Further, Wiegand (2012) followed up with families after death of a loved one due to an unexpected illness, having initially interviewed the family during the process of determine whether to maintain or remove life sustaining treatments; results of this study suggest modifications to family management styles to address maintenance and progress. As Bousso and colleagues (2012) point out, it is essential to identify and understand changes in family management style in preparing interventions to promote resilience. Thus, there is benefit to examining predictors of sustained resilience (thriving, accommodating), recovery (moving from enduring, struggling or floundering to more resilient styles), continued

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Barakat

distress (continuing difficulty or change across less resilient styles of enduring, struggling, and floundering), and erosion of resilience over time (moving from thriving or accommodating to enduring, struggling, or floundering). These predictors may include family management components and dimensions as well as contextual factors. Consider also prospective designs that identify predictors of maintenance and change in style as families engage in continued management or prepare for or experience death of a loved one or family management in the context of a foreshortened future. In conclusion, the manuscripts in this special issue underscore the adaptability of the Family Management Style Framework and represent important advancements for the Framework by incorporating social ecology and generalizing the Framework to new populations and situations. In addition to primary studies with mixed methods and/or prospective designs, a critical next step will be the translation of finding for the Framework to development and testing of interventions to encourage more resilient family management styles. Interventions developed on the foundation of the Family Management Style Framework have potential for implementation across health care providers and treatment settings. Studies presented in this special issue point to targets (e.g. beliefs about the chronic health condition) and approaches for intervention such as inclusion of multiple caregivers and problem-solving to negotiate patient and family roles in meeting treatment demands. Accounting for contextual factors in assessment and in intervention development will further promote translation of the Family Management Style Framework to effective clinical approaches. References
Barakat, L.P., & Alderfer, M.A. (2011). Introduction to the special issue: Advancing the science of family assessment in pediatric psychology. Journal of Pediatric Psychology, 36(5), 489-493. doi:10.1093/jpepsy/jsq110 Beeber, A.S., & Zimmerman, S. (2012). Adapting the Family Management Style Framework (FMSF) for families caring for older adults with dementia. Journal of Family Nursing, 18(1), 123-145. doi:10.1177/1074840711427144 Blythe, C., Rempel, G.R., Rogers, L.G., & Ravindran, V. (2012). The process of family management when a baby is diagnosed with a lethal congenital condition. Journal of Family Nursing, 18(1), 35-64. doi:10.1177/1074840711427143 Bousso, R.S., Misko, M.D., Mendes-Castillo, A.M.C., & Rossato, L.M. (2012). Family Management Framework and its use with families who have a child undergoing palliative care at home. Journal of Family Nursing, 18(1), 91-122. doi:10.1177/1074840711427038

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Kazak, A. E. (1997). A contextual family/systems approach to pediatric psychology: introduction to the special issue. Journal of Pediatric Psychology, 22(2), 141-148. doi:10.1093/jpepsy/22.2.141 Knafl, K., Deatrick, J.A., Gallo, A., Dixon, J., Grey, M., Knafl, G., & OMalley, J. (2011). Assessment of the psychometric properties of the Family Management Measure. Journal of Pediatric Psychology, 36(5), 494-505. doi:10.1093/jpepsy/ jsp034 Knafl, K.A., Deatrick, J.A., & Havill, N.L. (2012). Continued development of the Family Management Style Framework. Journal of Family Nursing, 18(1), 11-34. doi:10.1177/1074840711427294 Wiegand, D.L. (2012). Family management after sudden death of a family member. Journal of Family Nursing, 18(1), 146-163. doi:10.1177/1074840711428451 Wollenhaupt, J., Rodgers, B., & Sawin, K. (2012). Family management of a chronic health condition: Perspectives of adolescents. Journal of Family Nursing, 18(1), 65-90. doi: 10.1177/1074840711427545

Bio
Lamia P. Barakat, PhD, is Director of Psychosocial Services, Division of Oncology, at The Childrens Hospital of Philadelphia and associate professor, Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania. Dr. Barakats federally-funded research program focuses on examining risk-and-resistance models of adaptation to pediatric chronic conditions, particularly sociodemographic and family factors in quality of life and disease management in pediatric hematology and oncology. Another focus is on translating risk-and-resistance models into empirically supported interventions to improve disease management, school functioning, quality of life in pediatric samples. Within oncology, at present, Dr. Barakat has an active research program examining evidenced based assessment in clinical care and posttraumatic stress and posttraumatic growth in survivors of childhood cancer and their caregivers. Future projects involve understanding perceived benefits and barriers to participation in clinical trials and examining engagement of adolescents and young adults with cancer in this decision-making and implications for adherence to treatment and quality of life.

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