Home and Community Care Digest

Home and Community Care Digest 6(2) May 2007 : 0-0

Mothers of children with complex health needs face barriers accessing and using home care services

Abstract

Due to advances in technology and treatment, many children with complex and continuing health care needs who were formerly institutionalized can now be cared for at home. This study examines the challenges mothers of these children face in attempting to leave the house, both with their children and without them. For mothers of children with complex health needs, the time, effort, and planning required to leave the house with their children often makes this task seem insurmountable, contributing to their feelings of stress and isolation. Respite services that enable mothers to leave their children at home should better address the needs of these women.
Background: Approximately 30,000 children in the province of Ontario live with severe disabilities. Due to advances in technology and treatment, many children with complex and continuing health care needs who were formerly institutionalized can now be cared for at home. The vast majority of these children are cared for by their mothers. Many of these women experience increased stress and isolation, and respite care has been emphasized as a way to assist these women. This study examines the challenges that these mothers face in attempting to leave their homes, both with their children and without them.

Methods: Eleven mothers of children receiving home care services from Community Care Access Centres (CCACs) were interviewed about their experiences leaving the house. Eight of these mothers lived in one urban area and three lived in a rural area. Three were single mothers. One mother was employed full-time, six were employed part-time and four were not employed. Children's conditions included cerebral palsy, muscular dystrophy, Down syndrome and a brain tumour. Nine children required technological intervention for mobility, eight for feeding, and one for breathing. Home care services included nursing, physio- and occupational therapy, personal support services, and additional funds to purchase services.

Findings: Mothers experienced many difficulties leaving the house with their child including physical, social, and service challenges. Physical challenges included packing medications and equipment, dressing the child, transferring the child from wheelchair to vehicle and back again, and navigating the wheelchair through uneven and inaccessible terrain. For all children fed by gastronomy tubes, at least one hour was needed between feeding and traveling by car in order to avoid choking and vomiting. Social challenges pertained to the limited availability of alternative care providers to provide respite for mothers. When mothers wanted to leave the house without their children, some were able to rely on family and friends to care for the child. However, few mothers were able to leave for more than a few hours as others did not possess the skills necessary to manage all of the medical tasks required. The delivery and organization of paid respite posed service challenges. Services offered via CCACs or other agencies were often not fully accessed for a variety of reasons. In some cases, the workers assigned to care for the children did not have the training required to offer all necessary interventions. Some women opted not to leave the house when their paid respite worker arrived, either because they felt the time allocated (often 2 hours) was too short to accomplish tasks outside of the house, or because they did not know the worker assigned to care for their child. Finally, many children had difficulty adjusting to the frequent turnover of paid respite workers. Out-of-home respite was an option for urban women, but lack of availability and distance made the use of such centres impractical for rurally-located women.

Conclusions: For mothers of children with complex health needs, the time, effort, and planning required to leave the house with the children often makes this task seem insurmountable, contributing to their feelings of stress and isolation. Service challenges related to respite can be best addressed by health policy changes. Respite services that enable mothers to leave their children at home should better reflect the needs of these women: workers should be qualified to conduct all tasks needed by the child, respite periods should be adequate to allow women to make practical use of the time allocated, and families should be visited by the same workers whenever possible to establish continuity and trust.

Reference: Yantzi NM, Rosenberg MW, McKeever P. "Getting out of the house: The challenges mothers face when their children have long-term care needs." Health & Social Care in the Community. 2006;15(1):45-55.

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