Family Resilience From the Perspective of Caregivers of Youth With Sickle Cell Disease

Overview

Journal J Pediatr Hematol Oncol

Specialty Pediatrics

Date 2019 Dec 10

PMID 31815887

Citations 5

Authors

Steven K Reader

Ashley Pantaleao

Colleen N Keeler

Nicole M Ruppe

Anne E Kazak

Diana L Rash-Ellis

Jean Wadman

Robin E Miller

Janet A Deatrick

Affiliations

Soon will be listed here.

Abstract

Families coping with sickle cell disease (SCD) often face heightened psychosocial risk factors, and research in pediatric SCD has often focused more on this area than resiliency factors. The aim of this study was to gain a better understanding of family resiliency in SCD based on caregiver perspectives. A secondary qualitative analysis was conducted with data from a mixed-methods study of caregivers of youth with SCD (n=22). Qualitative analyses involved coding based on 2 resiliency frameworks, organizing coding categories into themes, and systematically reintegrating these themes into a conceptualization that reflected family resiliency. Themes aligned well with the resiliency frameworks and related to family belief systems and meaning-making around SCD (acceptance of SCD, positive attitude, religious faith), family organization and adaptation (flexibility, stability, social supports), and the importance of communication and problem-solving. Study findings emphasize the importance of assessing resilience in families of youth with SCD and suggest the potential clinical benefits of developing psychosocial interventions based on family strengths.

Citing Articles

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