I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child
child; England; female; male; adult; human; Scotland; home care; Wales; patient care; article; controlled study; interview; preschool child; human experiment; wellbeing; conceptual framework; adolescent; thinking; decision making; father; mother; thematic analysis; heat; disabled person; chronic patient; biotechnology; regeneration
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 5-25years) 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. Copyright © 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.
Mitchell TK; Bray L; Blake L; Dickinson A; Carter B
Health and social care in the community
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/hsc.13870" target="_blank" rel="noreferrer noopener">10.1111/hsc.13870</a>
Multi-agency working in services for disabled children: what impact does it have on professionals?
Communication; PedPal Lit; 'Every Child Matters' (DfES; 2003) and the Children Bill (DfES 2004) give a high priority to an integrated approach to service provision. This paper focuses on multi-agency working for disabled children with complex health-care needs; a group of children who; AdolescentAttitude of Health Personnel Child Child Health Services/organization & administration Child; and relationships with families with disabled children. However; collaboration with colleagues; multi-agency working is now a central feature of government policy. In relation to children's services; NewbornInterinstitutional Relations Interviews Job Satisfaction Professional Role Research Support; Non-U.S. Gov't Social Work/organization & administration%X Whilst agencies in many sectors have been encouraged to work together to better meet the needs of service users; perhaps even more than most; Preschool CommunicationCommunity Networks Disabled Children/rehabilitation Great Britain Health Services Needs and Demand Humans Infant Infant; require the many professionals who support them and their families; the English green paper; the National Service Framework; there was concern that the overall impact of multi-agency working on disabled children and their families would be limited.; to work more closely together. Drawing on the findings from a 3-year qualitative research study; whilst professionals felt that they were able to offer families a more efficient service
2005
Abbott D; Townsley R; Watson D
Health And Social Care In The Community
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2524.2005.00543.x" target="_blank" rel="noreferrer">10.1111/j.1365-2524.2005.00543.x</a>
Assessing structure, process and outcome in palliative day care: a pilot study for a multicentre trial
Palliative day care is an expanding service which remains under-researched. Study designs need to be developed to evaluate the costs and outcomes of the service in ways which are meaningful to patients, clinicians and policy-makers. At the same time, these must be open to the same criteria for rigour and reliability as techniques used elsewhere in health and social service evaluation. To this end, a developmental stage of exploratory research was undertaken at the start of a major multicentre trial of palliative day care to meet two clear aims: to understand more about the structure and processes of palliative day care, and to identify ways in which service outcomes could be evaluated and measured. In-depth observations at five palliative day care centres were undertaken across one health region. This provided a better understanding of the models, outcomes and processes of palliative day care in five different environments. Centres represented the spectrum of medical and social care models and findings were analysed using an organisational systems approach. The findings showed that, despite the lack of a national strategic approach to developing the service, the centres all provided a core set of services which were broadly similar. However, differences in philosophy, ownership, and organisation affected how the services were provided and may have an impact on the costs of the service. The study has provided a more in-depth understanding of palliative day care services in order to design an effective research strategy for evaluating a service which crosses the boundaries of health and social care.
2000
Douglas HR; Higginson IJ; Myers K; Normand C
Health And Social Care In The Community
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article