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Developing services to support parents caring for a technology-dependent child at home
1School of Nursing, Midwifery and Health Visiting, University of Manchester, UK. sue.kirk@man.ac.uk
Child: Care, Health and Development
|April 24, 2004
Summary
Families caring for technology-dependent children at home face significant unmet needs. Community services require better planning, coordination, and recognition of parental expertise to provide adequate support.
Area of Science:
- Pediatric Healthcare
- Family Support Services
- Home-Based Care Technology
Background:
- Medical advances and policy shifts have increased the number of technology-dependent children requiring home care.
- These children necessitate complex, intensive care managed by parents, often relying on medical technology.
Purpose of the Study:
- To explore the experiences of families caring for technology-dependent children at home.
- To identify their practical and other support needs.
- To assess the adequacy of current service provision.
Main Methods:
- In-depth interviews with parents of 24 technology-dependent children.
- Interviews with 44 health, social care, and other professionals.
Main Results:
- Community services are underdeveloped, with major gaps in short-term care, home support, specialist equipment, and therapies.
- Service planning and coordination are often poor, and few families have a designated key worker.
- Parents reported professionals often overlooked the emotional toll of caregiving and their expertise, with inadequate information transfer from hospitals.
Conclusions:
- Integrated and coordinated services are essential, requiring partnership between families and service providers at strategic and operational levels.
- Services must better meet the complex needs of families caring for technology-dependent children at home.