Negotiating an unstable ladder: the experience of Maori families caring for a technology dependent child

Abstract

This research explores the perceptions and experiences of Maori families/whanau, caring for the technology dependent child, referred to the Kidz First Homecare Nursing Service in Counties Manukau, New Zealand. Objectives • To gather qualitative information from a selected group of Maori families relating to their experiences and perceptions of care coordination for their technology dependent child. • To provide an account of the perceptions of parents/caregiver/whanau, particularly in relation to the coordination of their care. • To provide an analysis of the themes identified by the participants. • To make recommendations relating to policy and planning for technology dependent children. Method This qualitative research uses an ethnographic inductive approach in the form of semi-structured interviews to gather data from eight participants. Each interview was taped and fully transcribed followed by line-by-line analysis, and patterns and themes extracted from the findings. Results Within the overarching themes of cultural values and care co-ordination two issues are constant regardless of the environment or setting where the family engages with health professionals: • Being heard; • Negotiating partnerships. These two themes take on particular significance for families at times when change occurs such as during transition in relation to entry and exit between services and developmental stages of childhood. Technology dependent children have significant needs and family/whanau health revolves around the responsiveness of services supporting families. Two further themes are identified: • Transition points; and • Family/whanau health. Conclusion Caring for a technology dependent child is not a normal parenting experience and has a significant impact on family/whanau health. Effective care coordination and partnership with health professionals is supportive and improves the quality of life for both child and family. Cultural support is really helpful for families and provides a platform for ongoing communication and helps parents gain resiliency particularly when health service systems provide barriers that conflict with personal values. The first discharge home is the most difficult. Planning for discharge is important and needs to include processes to provide funding and training for alternative care so parents can access acceptable options for support to protect the health of parents, particularly mothers who are most often the primary caregivers. Home visiting and care continuity provided by community-based specialist paediatric services enhance the experiences of families. Models of primary health care that promote a generic approach are unlikely to provide the expertise or the specialist community services needed to support technology dependent children and the families caring for these children.