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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Article info
Publication history
Published online: May 19, 2022
Accepted:
May 6,
2022
Received in revised form:
April 16,
2022
Received:
January 4,
2022
Identification
Copyright
© 2022 Elsevier Inc. All rights reserved.
