Mitchell, Tracy Karen 
ORCID: 0000-0003-0014-8016, Bray, Lucy, Blake, Lucy, Dickinson, Annette and Carter, Bernie
(2022)
<i>'I feel like my house was taken away from me'</i>: Parents' experiences of having home adaptations for their medically complex, technology-dependent child.
HEALTH & SOCIAL CARE IN THE COMMUNITY, 30 (6).
E4639-E4651.
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Mitchell et al 2022 'I feel like my house was taken away from me' HSCC Accepted Manuscript 28.5.22 PDF.pdf - Author Accepted Manuscript Download (364kB) | Preview |
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.
| Item Type: | Article |
|---|---|
| Uncontrolled Keywords: | biotechnology, families with disabled and, or chronically Ill children, young people, home adaptations, home care, medical home, patient-centred care |
| Divisions: | Faculty of Health and Life Sciences Faculty of Health and Life Sciences > Institute of Population Health |
| Depositing User: | Symplectic Admin |
| Date Deposited: | 20 Jun 2022 14:00 |
| Last Modified: | 13 Oct 2023 04:01 |
| DOI: | 10.1111/hsc.13870 |
| Related URLs: | |
| URI: | https://livrepository.liverpool.ac.uk/id/eprint/3156821 |
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