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Mothers’ views of the role of nursing respite in managing the stress and coping related to the home care of their children with medically fragile or complex conditions

University of British Columbia

This study used grounded theory to elicit mothers' views of the role of nursing respite in managing their stress and coping with children who are being cared for at home with medically fragile or complex health conditions. Respite services are required to provide families (in this case mothers) with a break from the condition, its management, and caregiving. This research was part of a larger quantitative and qualitative study designed to evaluate British Columbia's Nursing Respite Program through exploration of families' responses to beginning and continuing to receive pediatric respite care at home. This research used a subset of data from 10 families to discover theory related to the process of adapting to respite—from mothers' perspectives. Data collection involved in-depth unstructured interviews and observations in the families' homes at three set time periods: prior to the commencement of nursing respite and six and 12 months during the delivery of services. Data were coded from transcribed interviews and field notes and the constant comparative method of data collection and analysis. Mothers' experiences of caring for their special children and adjusting to respite were conceptualized as evolving through a four-stage social process of Learning to Manage the System: Taking In; Losing Control; Taking Charge; and Manage Effectively within the Constraints of Inflexible Rules. Influencing factors included whether services were in place at the time of their children's initial discharge from hospital, and the presence of significant degrees of uncertainty. Mothers simultaneously moved through four phases in their relationships with the health care professionals: Blindly Trusting, Becoming Enlightened, Seeking Effective Collegial Relationships and Establishing a Working Relationship. This report includes implications for ways nursing practice can be refocused to facilitate mothers' coping, to decrease uncertainty, and to foster stronger, more effectively relationships with families. Areas of further study are identified and implications for nursing education are discussed. This research generates knowledge about mothers' perceptions of the demands of caring for children with very special needs at home and the impact of in-home professional services, and provides direction for improvement of care by nurses, other professionals, and policy makers.

Thesis/Dissertation

application/pdf

2009-05-20

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http://hdl.handle.net/2429/7970

Nursing

University of British Columbia

UBCV

DSpace