Unsung heroes, flying blind-A metasynthesis of parents' experiences of caring for children with special health-care needs at home

Aims and objectives: To aggregate, synthesise and interpret qualitative research studies of parents' experiences of caring for a child with special health-care needs at home.

Background: Advances in the field of medical and nursing science have ensured better survival rates for children with chronic illnesses. Many of these children have significant special health-care needs. Today parents assume a caregiver role, undertaking tasks previously provided by nurses in hospitals. As the complexity of care delivered by parents continues to develop, synthesised knowledge can provide an evidence base that will support and guide nurses when caring for these families.

Design: Metasynthesis.

Methods: Based upon a systematic search protocol, a structured literature search, covering the years 2003-2016, was conducted in five electronic databases. Ten studies were included and appraised using the Critical Appraisal Skills Program assessment tool. A metasummary and a metasynthesis were undertaken guided by the metasynthesis methodology as described by Sandelowski and Barroso (Handbook for synthesizing qualitative research. New York, NY: Springer, 2007).

Results: The results were interpreted and integrated under the overarching theme "unsung heroes, flying blind," supported by eight elucidating categories that illustrate aspects of the parents' life world.

Conclusions: The enormous burden of care can weaken the parents' will to carry on and result in a decreased ability to provide care. This can have an impact on the parents' health, family functioning and the sick child's potential health outcomes. Nurses are in a unique position to help these families and should be better prepared for the role.

Relevance to clinical practice: Knowledge of how parents of children with special health-care needs experience their daily lives can promote trust in nurses and guide them in their efforts to support families with children living with chronic illness.