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Poster #102 - Family Resilience: Perspectives from Caregivers of Children with Sickle Cell Disease

Sat, March 23, 12:45 to 2:00pm, Baltimore Convention Center, Floor: Level 1, Exhibit Hall B

Integrative Statement

Introduction
The literature in pediatric Sickle Cell Disease (SCD) has focused on describing family psychosocial risks and stressors including increased risk for emotional distress and poorer quality of life in youth, caregiver illness-related stress (Barakat et al., 2007; Reader et al., 2017; Wonkam et al., 2014), and socio-ecological risk factors (Berry et al., 2010). When resilience and coping are discussed within the SCD literature, they are often conceptualized as individual rather than collective family processes. Walsh’s Family Resilience framework (Walsh, 2003, 2016) and Park’s (2010) meaning-making model align with the recent shift away from viewing resilience as an individual experience but rather as a shared, strengthening experience within a family that is dynamic and constantly evolving. The current study is the first application of these frameworks in families of children with SCD, and may help increase our understanding of resilience in the context of a chronic illness and heightened socio-ecological risk factors.
Methods
Data was collected from a larger study where caregivers of youth with SCD participated in qualitative interviews to provide feedback on the acceptability and utility of the Psychosocial Assessment Tool (PAT), a caregiver-report family psychosocial risk screener. Secondary data analysis conducted for this study used grounded-theory methods based on the Park Meaning-Making model. Initial open coding of the data by three independent team members revealed themes consistent with Walsh’s family resiliency framework. Qualitative analyses involved coding based on the Park and Walsh frameworks, organizing coding categories into themes, and systematically reintegrating these themes into an integrated conceptualization that reflected family resiliency.
Results
Caregivers (n = 22) of youth with SCD participated in qualitative interviews. Caregivers expressed their beliefs regarding their child’s SCD, including acceptance and embracing a positive attitude. Caregivers often cited their faith in God and participation in their religious community as being integral to coping with their child’s illness. Caregivers frequently discussed adaptations their families had to make to meet new challenges, and pointed specifically to the importance of social support. Many families described the importance of their child engaging in routine activities including school participation, physical activity, and family activities. Another common theme was the necessity of families being able to communicate their feelings effectively, facilitating the process of problem solving.
Discussion
Examining and framing the SCD experience through a family-centered lens is a strength of this study. It is important to examine the wider social contexts that play key roles in affecting how families cope with SCD and how they make sense of their illness experience. Themes that arose from the data reflected the resilience shown by many families coping with SCD, and aligned well with Walsh’s Family Resilience framework and Park’s Meaning-Making model. Study findings emphasize the importance of assessing resilience in families of youth with SCD, and suggest the potential clinical benefits of utilizing family strengths in developing psychosocial interventions.

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