Quality-of-life in technology-dependent children receiving home care, and their families--a qualitative study

This qualitative study explored quality-of-life (QL) issues among Wisconsin's technology-dependent children and their families.

Five semi-structured focus groups were held with parents, siblings and health care workers of home-dwelling children dependent upon technology such as tracheostomy, ventilator support and gastrostomy tube feedings. Focus group transcripts were analyzed using an editing style format, with each author as an independent analyst.

QL for the child was seen as a relative term, defined within the family, dependent upon the availability of services; and expressed in terms of physical comfort and function, and integration of the child into the family and community. Positive QL aspects for families include: growth as individuals, intrinsic rewards from the child and appreciation of others with handicaps. Negative impacts on family QL include: physical and mental anguish (e.g., exhaustion, suicidal ideation, back injuries), inhibitions of normal family functions, and isolation. Home nursing was highly valued despite lack of privacy. A number of ethical issues emerged including ineffective communication and lack of QL discussions during the child's acute treatment, end-of-life decisions, and potential cuts in Medicaid services. The latter issue prompted fear of poverty and divorce among siblings.

Technology appears to exceed the sociological and ethical components of the care of these children, and QL is defined in terms of physical comfort, functional status, adequate services, and family/community integration. Parents assume an ambiguous medical role with their child, and need respite care and advocacy from their health care team.