Tracy Mithchell
‘I feel like my house was taken away from me’: Parents' experiences of having home adaptations for their medically complex, technology-dependent child
Mithchell, Tracy; Bray, Lucy; Blake, Lucy; Dickenson, Annette; Carter, Bernie
Authors
Lucy Bray
Dr Lucy Blake Lucy5.Blake@uwe.ac.uk
Senior Lecturer in Psychology
Annette Dickenson
Bernie Carter
Abstract
Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto-driven photo-elicitation interviews conducted between August 2017 and June 2018 with 12 parents (10 mothers and 2 fathers) who have a technology-dependent child (aged 5–25 years) living in England, Scotland and Wales and David Seamon's five concepts of at-homeness (appropriation, at-easeness, regeneration, rootedness and warmth) as a conceptual framework, this paper addresses how parents' experienced home adaptations. Thematic analysis generated a meta-theme of ‘Home needs to be a home for all family members' and the three key themes: (1) ‘You just get told’ and ‘you're not involved’; (2) It's just the ‘cheapest’, ‘quickest’, ‘short-term’ approach; (3) Having ‘control’ and ‘thinking things through.’ The need to involve parents in decision-making about adaptations that are made to their home (family-informed design) is clear, not only from a cost-saving perspective for the state, but for creating an aesthetic and functional home that optimises health, well-being and feelings of at-homeness for the entire family.
Journal Article Type | Article |
---|---|
Acceptance Date | May 28, 2022 |
Online Publication Date | Jun 17, 2022 |
Publication Date | 2022-11 |
Deposit Date | Jun 28, 2022 |
Publicly Available Date | Jun 29, 2022 |
Journal | Health and Social Care in the Community |
Print ISSN | 0966-0410 |
Electronic ISSN | 1365-2524 |
Publisher | Wiley |
Peer Reviewed | Peer Reviewed |
Volume | 30 |
Issue | 6 |
Pages | e4639-e4651 |
DOI | https://doi.org/10.1111/hsc.13870 |
Keywords | biotechnology, families with disabled and/or chronically Ill children/young people, home adaptations, home care, medical home, patient-centred care |
Public URL | https://uwe-repository.worktribe.com/output/9663800 |
Publisher URL | https://onlinelibrary.wiley.com |
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‘I feel like my house was taken away from me’: Parents' experiences of having home adaptations for their medically complex, technology-dependent child
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Copyright Statement
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.© 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.
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