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Health Expect. 2019 Aug 29. doi: 10.1111/hex.12958. [Epub ahead of print]

'It would be much easier if we were just quiet and disappeared': Parents silenced in the experience of caring for children with rare diseases.

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1
School of Nursing and Midwifery, Faculty of Health, Community and Education, Mount Royal University, Calgary, Alberta, Canada.

Abstract

BACKGROUND:

Parent experiences of caring for children with neurodevelopmental disease have been silenced and constrained by social, political and health influences. There is a need to co-construct new meanings and interpretations of parenting a child with complex disabilities by having an increased understanding of the struggles and barriers for parents.

METHODS:

A hermeneutic phenomenology approach was applied in this inquiry. Fifteen parents of children with rare neurodevelopmental diseases participated in semi-structured interviews.

RESULTS:

Parents experienced silencing or being silenced within interactions with health-care and social care systems and providers. Interpretive thematic analysis revealed three insights: (a) parents experience a sense of disconnect and silencing as little is known or understood by health-care providers about the experience of caring for children at home; (b) parents make strong efforts to be heard and acquire services within health and social systems as fighters, saviours and navigators; and (c) parents sacrifice themselves to the caregiving role and become therapists and caregivers to their medically fragile children at the cost of losing themselves as parents.

CONCLUSION:

An understanding of parents' experiences in caring for a child with a rare neurodevelopmental disease may provide insight to systemic health and social support challenges faced by families and mitigate appropriate and supportive policies and services.

KEYWORDS:

caregivers; children; chronic disease; health-care system; neurodevelopmental disease; parents; rare disease; social care supports

PMID:
31466132
DOI:
10.1111/hex.12958

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