‘I feel like my house was taken away from me’: Parents’ experiences of having home adaptations for their medically complex, technology-dependent child

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 1980’s, 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 two 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; and, 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 the health, wellbeing and feelings of at-homeness for the entire family.