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.