Mother–nurse decision making practices for children with complex health care needs receiving homecare services: A qualitative descriptive study

Abstract

Background Many children with complex health care needs face chronic health and developmental issues that may include functional impairments, neurodevelopmental disabilities, and lifelong dependence on medical technology. Providing the necessary care and services for this unique group of children and youth places substantial demands on the health care system. Much of the focus on improvements has been in acute care settings even though homecare accounts for the largest proportion of health care utilization among children with complex health care needs. While parents assume great responsibility for their child's care at home, they indicate that the balance of power between themselves and their health care providers does not change when care shifts from the hospital to home. Given the expanding role of paediatric homecare and parents' concerns of their role in decisions related to their child's care, it is imperative to explore these practices in this unique setting. Purpose The purpose of this work is to explore mother–nurse decision making practices for children with complex health care needs receiving health care services in their home. Methods A qualitative descriptive study design was used. Five mothers and five nurses participated. Twenty‐six home observations with accompanying analytical memos and 10 semistructured interviews were conducted with five mothers and five homecare nurses. Thematic analysis of study data, using an iterative process, identified major themes. Findings Data revealed the complex and relational nature of mother–nurse decision making practices within the home setting. Three major themes were identified: (1) core areas of decision making, (2) a dynamic and collaborative process, and (3) centrality of relationships. Conclusions Study findings enhanced our understanding of how decision making and relational care practices take place in the home for children with complex health care needs receiving homecare services, which has implications for child and family health.

Exploration of the advanced preparation nurse‐mother role in care of children with chronic disease: A narrative inquiry

“…These findings indicate that professional experiences can transform the experience of motherhood for many nurses. Mothers of children with complex healthcare needs and their children's nurses have been studied in the literature to develop mutually supportive and respectful relationships, built over time upon a foundation of trust (LeGrow et al., 2022). Appropriate involvement of APN‐mothers in a child's circle of care should include equitable provision of nursing care for the patient.…”