'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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Journal Article
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Wiley
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.Description
Keywords
biotechnology, families with disabled and/or chronically Ill children/young people, home adaptations, home care, medical home, patient-centred care, 4203 Health Services and Systems, 42 Health Sciences, 44 Human Society, Pediatric, Behavioral and Social Science, 7 Management of diseases and conditions, 7.1 Individual care needs, Generic health relevance, 3 Good Health and Well Being, 1117 Public Health and Health Services, 1607 Social Work, Nursing, 4206 Public health, 4409 Social work
Source
Health and Social Care in the Community, ISSN: 0966-0410 (Print); 1365-2524 (Online), Wiley, 30(6), e4639-e4651. doi: 10.1111/hsc.13870
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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.