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Tailored Psychoeducational Home Interventions for Children with a Chronic Illness: Families' Experiences
Michele Capurso1, Gaetano Catalano2, Anna Calvaruso3
1Department of Philosophy, Human and Social Sciences and Education, University of Perugia, IT.
Insights
Personalized home-based support significantly improves quality of life for children with chronic illnesses. Tailored interventions and professional listening are key to successful family-centered care.
Area of Science:
- Pediatric chronic illness care
- Family-centered psychosocial support
- Healthcare intervention research
Background:
- Childhood chronic illness impacts quality of life through biopsychosocial factors.
- Home-based care intensifies the need for integrated family support.
- Existing support models may lack personalization for home-care settings.
Purpose of the Study:
- To present and evaluate a personalized, family-focused support project for children with chronic illnesses receiving home care.
- To assess the effectiveness of educational, social, and psychological services delivered within families' homes and communities.
- To explore the impact of a tailored, stakeholder-involved approach on family well-being.
Main Methods:
- A personalized support project involving 40 Sicilian families.
- Utilized the Psychosocial Assessment Tool (PAT) and Functional Psychology framework.
- Qualitative interviews with eight families in Palermo, analyzed via consensual qualitative research.
Main Results:
- Families highly appreciated the personalized support project.
- The presence of a professional who listened and connected families with the medical team was crucial.
- Adaptable activities, tailored to individual needs and contexts, were vital for success.
Conclusions:
- Tailored, family-level interventions are effective and acceptable for children with chronic illnesses.
- An educator acting as a liaison between families and the medical team enhances care.
- Further development and investigation of such family-centered strategies are recommended.
Abstract:
The quality of life for a child with a chronic illness depends on various factors, including the illness's severity, medical treatments, psychosocial and educational support, resource availability, and community involvement. These biopsychosocial factors become significant when the child receives care at home. This article presents and evaluates a highly personalized support project offered to 40 Sicilian families, consisting of educational, social, and psychological services delivered at the families homes and in their communities. Guided by the Psychosocial Assessment Tool (PAT) and the Functional Psychology framework, the project employed a family-focused approach to healthcare and was based on a continuous dialogue between all stakeholders. The project was evaluated through a qualitative interview with eight families in the Palermo area, which was analyzed using consensual qualitative research. Results revealed families' appreciation of the project and the importance of a professional who listened to their needs, provided a connection with the medical team, and tailored activities inside and outside the home. The ability of professionals to listen and adapt activities to different contexts and needs was crucial for the project's success. We conclude that creating tailored family-level interventions with an educator acting as a liaison with the medical team is a widely acceptable strategy that should be further developed and investigated.
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