Living in the in-between: families caring for a child with a progressive neurodegenerative illness

Title

Living in the in-between: families caring for a child with a progressive neurodegenerative illness

Creator

Rallison LB; Raffin-Bouchal S

Publisher

Qualitative Health Research

Date

2013

Subject

adolescent; Child; Female; Humans; Male; Palliative Care; home care services; Pediatrics; Family; Adult; Canada; Emotions; caregivers; Neurodegenerative Diseases; Respite Care; Stress; Preschool; Adaptation; Psychological

Description

Medical advances in recent years have led to an increased life span for children with progressive, neurodegenerative illnesses. The purpose of this hermeneutic inquiry was to explore the experience of families caring for their child at home. In-depth, audiorecorded interviews with six families (13 interviews) living in western Canada were transcribed and analyzed. The illness journey was revealed to be complex and unpredictable. We discovered many metaphors that spoke to the child's/family's life and explored the paradox of duality, such as holding both joy and sorrow, and containing both suffering and love. We outline implications for policy development within the area of respite care and coordination of services for families. The voices of families must be a vital component to influence and guide education and service development within the emerging specialty of pediatric palliative care.
2013-02

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

194-206

Issue

2

Volume

23

Citation

Rallison LB; Raffin-Bouchal S, “Living in the in-between: families caring for a child with a progressive neurodegenerative illness,” Pediatric Palliative Care Library, accessed August 3, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14687.

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