Coping With Family Stress After Reyes Syndrome

As noted earlier, it is possible that internal consistency was lower for this dimension because some approach-oriented disease management strategies for children with SCD are considered distraction for non-medical populations. Lastly, this study did not examine potential relationships between types of coping and psychosocial outcomes. Future research should incorporate assessments of coping as well as psychosocial and health-related outcomes to identify strategies that may be most adaptive for children and families.

Children with SCD and their families use a wide array of coping methods to manage disease-related challenges. Findings from this study extend previous research and demonstrate the complementary contributions of quantitative and qualitative assessments to the understanding of coping in the context of pediatric SCD at large. Considering the dynamic and multifaceted nature of coping, future research should consider applying mixed methods designs to obtain more systematic and comprehensive assessments and examining relationships between coping and adjustment.

A thorough understanding of coping has important implications for clinical practice, assessment development and refinement, and interventions to promote positive psychosocial outcomes for children with SCD. We would like to express our gratitude towards Nishi Mehta, Alyssa Jones, and Olivia Klingbeil for their assistance with this project.

No conflicts of interest are declared for the authors with regards to this manuscript. National Center for Biotechnology Information , U. J Pediatr Hematol Oncol. Author manuscript; available in PMC Jan 1. The publisher's final edited version of this article is available at J Pediatr Hematol Oncol. See other articles in PMC that cite the published article. Abstract The ways in which a family copes with the physical and psychosocial burdens of sickle cell disease SCD can influence child and family functioning.

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Introduction Sickle cell disease SCD is an inherited, multisystem blood disorder characterized by rigid, crescent-shaped red blood cells that are prone to aggregating and obstructing blood flow to organs and bones. Specific research questions addressed in this study include: What stressors related to SCD and its treatment do children experience? What unique and consistent contributions do quantitative and qualitative data provide to understanding child coping and parent coping assistance with SCD?

Materials and Methods Procedure Participants were recruited from a large pediatric hospital in the northeastern region of the United States. Participants Participants included 15 children with SCD 8 females and their parents. Measures Semi-structured Interview child and parent versions A semi-structured qualitative interview was adapted to assess SCD-related stressors as well as child coping and parent coping assistance strategies used to manage these challenges.

Data Analysis Qualitative coding Interviews were audio-recorded, transcribed, and coded. Quantitative data transformation Data from the HICUPS were used to classify children as to whether or not they endorsed each coping subscale. Merging qualitative and quantitative data Following initial thematic and descriptive analyses of qualitative and quantitative data, datasets were merged by mapping quantitative data onto qualitative codes using a procedure frequently utilized in mixed methods studies with triangulated or embedded designs.

Results Families reported a range of stressors that children with SCD face, which were categorized into seven domains: The process, the procedure, bad reactions. Probably only one of my friends knows about it. Open in a separate window. He understands my pains and I understand his. She draws pictures and she loves arts and crafts and she likes writing. We soak them in hot or warm water. We talk about how she feels, and how it makes her feel.

You can get through this. They all know what kinds of medicines to give her. Just advocating for her. My husband was going to be here, but she wanted me here, so I had to explain that I needed to go home and get some sleep and be here for her today wide-eyed. This is the reality of your situation right now. So you got to learn how to deal with it.

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  • Approach coping strategies Approach-oriented child coping strategies that emerged in both the qualitative and quantitative data included relaxation, emotional expression, practical disease management strategies, making plans and setting routines, seeking help from the medical team, taking control, seeking understanding, direct problem solving, acceptance, emotion-focused support, problem-focused support, and cognitive decision making.

    Avoidance coping strategies Avoidance strategies endorsed in both qualitative and quantitative data included distraction, cognitive avoidance, and behavioral avoidance. What unique contributions do quantitative and qualitative assessments provide to understanding child coping? Unique approach coping strategies Unique approach-oriented child coping strategies that emerged from qualitative data but were not reported quantitatively included maintaining normalcy, using comfort items, and social support see Table 2 for example responses.

    Unique avoidance coping strategies There were no avoidance-oriented child coping strategies reported in the interviews that were not endorsed on the HICUPS. Approach coping assistance strategies A range of approach coping assistance strategies were endorsed by parents both qualitatively and quantitatively, such as encouraging cognitive restructuring, emotional expression, direct problem solving, cognitive decision making, acceptance, practical disease management strategies, and religious or spiritual coping, as well as educating others about SCD, providing emotion and problem focused support, modeling self-advocacy, and coordinating with the school and medical team.

    Avoidance coping assistance strategies Among the avoidance-oriented coping assistance strategies, encouraging cognitive avoidance and distraction were endorsed in both qualitative and quantitative data see Table 3 for examples from qualitative data. What unique contributions do quantitative and qualitative assessments provide to understanding parent coping assistance?

    Unique avoidance coping assistance strategies There were no avoidance-oriented parent coping assistance strategies reported qualitatively that were not endorsed on the PSCQ. Discussion Findings indicate that children with SCD face a wide range of biomedical and psychosocial challenges that encompass but extend beyond pain. Limitations The small sample size precluded more sophisticated analyses and limited the scope of the quantitative component of this study.

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    Conclusion Children with SCD and their families use a wide array of coping methods to manage disease-related challenges. Acknowledgments Source of Funding: Footnotes Conflicts of Interest: Contributor Information Aimee K. Sickle cell disease; a general overview. Pain management in children and adolescents with sickle cell disease. American Journal of Hematology.

    Coping and coping assistance among children with sickle cell disease and their parents

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