‘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

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