Sickle Cell Disease in Children: An Exploration of Family Resilience through the Experiences of Family Caregivers

Abstract

Background: Sickle cell disease (SCD) is a chronic and potentially life-threatening genetic blood disorder with childhood onset. Caring for children with SCD can precipitate greater than average time demands, medical costs, employment constraints, and childcare challenges. Research has shown that family resilience is a key construct capable of enhancing family health and well-being, as well as neutralizing the burden of caring for an ill child. Aim: Applying the Family Resilience Model, this qualitative study involved exploring the phenomenon of family resilience through the perceptions and lived experiences of family caregivers of children with SCD. Methods: 10 self-identified primary SCD caregivers were recruited with the help of the Sickle Cell Association of New Jersey (SCANJ). Three researches and five open-ended interview questions elicited participants' descriptions of their lived experiences. Results: Using an Interpretive Phenomenological Approach and Donabedian's conceptual model to analyze data, three categories emerged from verbatim transcriptions of interviews: family experiences and caring for a child with SCD (Structure); family strengths (Process); and resilience & adaptation (Outcome). The emergent theme was Key Family Strengths Fosters Family Resilience and Adaptation. Conclusions: Findings from this study offered insight into the diverse experiences of caring for children with SCD in the framework of family resilience. Results can facilitate the enhancement of family resilience and adaptation for future families and in designing care specifically tailored for these family caregivers. Recognizing resilience processes utilized by family caregivers of children with SCD is important for future research and to render support by healthcare practitioners.

Family Resilience and Its Association with Psychosocial Adjustment of Children with Chronic Illness: A Latent Profile Analysis

“…As in previous studies (Herbell, Breitenstein, Melnyk, & Guo, 2020), parents with employment status and families with medical insurance coverage for treatment of children were more likely to belong to the high family resilience group compared to the low family resilience group; this partially supports the assertion that employment instability and financial constraints are risk factors for family resilience (Nwanonyiri et al, 2019). Families affected by unemployment tend to focus their energy on improving finances rather than on family relationships or parenting (Orthner et al, 2003); thus, family economic resources are an important protective factor of family resilience.…”