Caring for children and youth with special health care needs can be overwhelming for families. Higher levels of need often require more extensive and coordinated support. The burden of caring for children with complex health care needs can result in negative effects for parents and caregivers over time, thus increasing the risk of poor physical, emotional, and social well-being. Nursing care coordination is an evidence-based intervention that provides families with guidance and support by delivering safe and effective care. The quality of coordination, however, can profoundly shape families' experiences. The purpose of this study was to explore caregivers' perceptions of nursing care coordination provided by their child's public health plan through the lens of Kristen Swanson's Middle Range Caring Theory.
The study was conducted across three counties in Florida.
A descriptive qualitative design was used. A total sample of nine caregivers and parents were interviewed. Semistructured interviews were used, and data were analyzed utilizing Colaizzi's interpretive method. Categories, subthemes, and themes were created.
The findings of this study highlighted caregivers' experiences of successes and challenges with their child's nurse care coordinators. The exploration of caregivers' perceptions led to two major themes: Triumphs of Nursing Care Coordination and Pitfalls of Nursing Care Coordination. The two themes produced five subthemes: (a) It Takes a Village, (b) Being my Voice, (c) Third Class Citizen, (d) Being Out of Touch, and (e) Just a Title.
Strengths of care coordination include enhanced access to resources, clear guidance for navigating complex health care systems, and improved understanding of treatment options, all of which help alleviate caregiver strain. While nursing care coordination offers many benefits, challenges with the current infrastructure still exist. Nurses must advocate for policies that alleviate caseload pressures, strengthen continuity of care, and identify barriers like fragmented communication and inadequate staffing. Nurses can foster a sense of support by creating forums where parents and caregivers share experiences, while encouraging decision-makers to stay informed about the challenges these families face.
- Exploring Nursing Care Coordination Through Swanson's Theory of Caring: Perspectives of Families of Children and Youth With Special Health Care Needs
- Régine Placide Reaves - Defense Information Systems AgencyKate Lui - Universitas Respati IndonesiaInessa Manasyan - Defense Information Systems AgencyRuth Everett-Thomas - University of Miami
- Professional case management, Vol.31(4)
- LIPPINCOTT WILLIAMS & WILKINS; PHILADELPHIA
- 9
- Beta Tau Chapter of the University of Miami School of Nursing and Health Studies Florida Nurses Foundation Association of Black Nursing Faculty
This work was supported by the Beta Tau Chapter of the University of Miami School of Nursing and Health Studies, the Florida Nurses Foundation and the Association of Black Nursing Faculty.
- School of Nursing - Academic Programs; School of Nursing & Health Studies
- English
- Journal article
- 41535992
- 991032960927502976