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Parent-to-parent peer support for children and youth with special health care needs: Preliminary evaluation of a family partner program in a healthcare system

      Highlights

      • The Family Partner model enhances patient- and family-centered care for CYSHCN
      • The Family Partner model can be implemented across health care settings
      • Family Partners provide support and information for patients and families
      • Family Partners communicate patient needs and service gaps to providers
      • Family Partner champions facilitate successful implementation of this novel role

      Abstract

      Purpose

      Children and youth with special health care needs (CYSHCN) have complex care and coordination needs that are often managed by parents or primary caregivers. This study describes a parent-to-parent peer support pilot program for parents of CYSHCN implemented in both outpatient and inpatient settings across a large health system.

      Design & methods

      Retrospective data from the Family Partner Program documentation in patient health records are described. Descriptions about the encounters and types of support provided are also reviewed using qualitative descriptive analysis.

      Results

      Three Family Partners conducted 203 encounters with parents of 90 CYSHCN over six months. Family Partners provided both emotional and tangible support. Primary themes discussed included the persistent care, coordination and management needs related to parenting a child with complex care needs, the subsequent worry and stress about their child and family, and the need for stress management and self-care.

      Conclusion

      This study provides early evidence that implementation of a parent-to-parent peer support program for parents of CYSHCN in a large, academic medical center is feasible. Family Partners enhanced their healthcare team's ability to provide patient- and family-centered support for pediatric patients and their families through the provision of emotional and tangible support.

      Practice implications

      Family Partners, who are trained in effective use of the shared experience, the health coach model, and healthcare systems, and who are supported by a strong supervisory team, are ideally suited to support families and patients as they address their concerns and unmet needs and navigate complex health circumstances.

      Keywords

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