'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 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.

The Acceptability and Impact of the Xploro Digital Therapeutic Platform to Inform and Prepare Children for Planned Procedures in a Hospital: Before and After Evaluation Study.

BACKGROUND: There is increasing interest in finding novel approaches to improve the preparation of children for hospital procedures such as surgery, x-rays, and blood tests. Well-prepared and informed children have better outcomes (less procedural anxiety and higher satisfaction). A digital therapeutic (DTx) platform (Xploro) was developed with children to provide health information through gamification, serious games, a chatbot, and an augmented reality avatar. OBJECTIVE: This before and after evaluation study aims to assess the acceptability of the Xploro DTx and examine its impact on children and their parent's procedural knowledge, procedural anxiety, and reported experiences when attending a hospital for a planned procedure. METHODS: We used a mixed methods design with quantitative measures and qualitative data collected sequentially from a group of children who received standard hospital information (before group) and a group of children who received the DTx intervention (after group). Participants were children aged between 8 and 14 years and their parents who attended a hospital for a planned clinical procedure at a children's hospital in North West England. Children and their parents completed self-report measures (perceived knowledge, procedural anxiety, procedural satisfaction, and procedural involvement) at baseline, preprocedure, and postprocedure. RESULTS: A total of 80 children (n=40 standard care group and n=40 intervention group) and their parents participated in the study; the children were aged between 8 and 14 years (average 10.4, SD 2.27 years) and were attending a hospital for a range of procedures. The children in the intervention group reported significantly lower levels of procedural anxiety before the procedure than those in the standard group (two-tailed t63.64=2.740; P=.008). The children in the intervention group also felt more involved in their procedure than those in the standard group (t75=-2.238; P=.03). The children in the intervention group also reported significantly higher levels of perceived procedural knowledge preprocedure (t59.98=-4.892; P=.001) than those in the standard group. As for parents, those with access to the Xploro intervention reported significantly lower levels of procedural anxiety preprocedure than those who did not (t68.51=1.985; P=.05). During the semistructured write and tell interviews, children stated that they enjoyed using the intervention, it was fun and easy to use, and they felt that it had positively influenced their experiences of coming to the hospital for a procedure. CONCLUSIONS: This study has shown that the DTx platform, Xploro, has a positive impact on children attending a hospital for a procedure by reducing levels of procedural anxiety. The children and parents in the intervention group described Xploro as improving their experiences and being easy and fun to use.