Article:Glendinning, Caroline, Clarke, Susan, Hare, Philippa et al. (2 more ReuseUnless indicated otherwise, fulltext items are protected by copyright with all rights reserved. The copyright exception in section 29 of the Copyright, Designs and Patents Act 1988 allows the making of a single copy solely for the purpose of non-commercial research or private study within the limits of fair dealing. The publisher or other rights-holder may allow further reproduction and re-use of this version -refer to the White Rose Research Online record for this item. Where records identify the publisher as the copyright holder, users can verify any specific terms of use on the publisher's website. TakedownIf you consider content in White Rose Research Online to be in breach of UK law, please notify us by emailing eprints@whiterose.ac.uk including the URL of the record and the reason for the withdrawal request. Progress and problems in developing outcomes-focused social care services for older people in EnglandCaroline Glendinning, Sue Clarke, Philippa Hare, Jane Maddison, Liz Newbronner
Background Therapy interventions emerged four times in the top 10 research priorities in a James Lind Alliance research prioritisation exercise for children with neurodisabilities (Morris C, Simkiss D, Busk M, Morris M, Allard A, Denness J, et al. Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership. BMJ Open 2015;5:e006233). The National Institute for Health Research (NIHR) commissioned this study as part of an information-gathering exercise in response to this. Objectives The objectives were to (1) describe the current practice, approaches and schools of thought in relation to physiotherapy, occupational therapy and speech and language therapy for children with neurodisability; (2) explore clinical decision-making; (3) investigate views on outcomes and their measurement, particularly participation as an outcome, that is, the child’s ability to have the opportunity to be involved in life situations and activities (e.g. communication, mobility, interpersonal interactions, self-care, learning and applying knowledge); (4) seek views on the aspects of therapy interventions that have an impact on outcomes; and (5) elicit stakeholder views on research needs and priorities. Design, setting and participants More than 70 professionals (therapists, service leads, paediatricians and education staff) and 25 parents participated in a qualitative interview (either individually or as part of a focus group). Results Professional thinking and models of service delivery are in a state of flux and development. There is a move towards goals-focused, family-centred approaches. Work tends to be highly individualised, with few protocols. Parents are certain of the value of therapies, although they may experience difficulties with provision and may seek (additional) private provision. Therapy interventions are conceived as three components: the therapist, the procedures/equipment, etc., and the wider therapeutic environment. They are believed to be highly complex and poorly understood. Although participation is widely endorsed as a core intervention objective of therapy interventions, its suitability, or appropriateness, as an outcome measure was questioned. Other child and/or parent outcomes were identified as more or equally important. Notions of intermediate outcomes – in terms of body structure/function, and the achievement of activities – were regarded as important and not counter to participation-focused approaches. Among therapists, research on intervention effectiveness was (cautiously) welcomed. A number of methodological challenges were identified. A portfolio of study designs – quantitative and qualitative, experimental and observational – was called for, and which included economic evaluation and clear pathways to impact. Limitations The study was not successful in recruiting children and young people. Further work is required to elucidate the views of this key stakeholder group. Conclusions Therapy interventions are poorly understood. There was strong support, tempered a little by concerns among some about the feasibility of demonstrating impact, for investment in research. Future work The identification of research priorities was a core study objective, and a wide-ranging research agenda was identified. It included ‘foundational’ research into neurodisability, the active components of therapy interventions and the concept of participation. Three areas of evaluation were identified: overall approaches to therapy, service organisation and delivery issues, and the evaluation of specific techniques. Parents regarded evaluations of approaches to therapy (e.g. goals-focused; supporting family-self management) as priorities, along with evaluations of models of service provision. Professionals’ views were broadly similar, with an additional emphasis on methodological research. In terms of specific techniques, there was no shared agreement regarding priorities, with views informed by personal interests and experiences. Funding The NIHR Health Technology Assessment programme.
Background:In planning high-quality research in any aspect of care for children and young people with life-limiting conditions, it is important to prioritise resources in the most appropriate areas.Aim:To map research priorities identified from existing research prioritisation exercises relevant to infants, children and young people with life-limiting conditions, in order to inform future research.Design:We undertook a systematic scoping review to identify existing research prioritisation exercises; the protocol is publicly available on the project website.Data sources:The bibliographic databases ASSIA, CINAHL, MEDLINE/MEDLINE In Process and Embase were searched from 2000. Relevant reference lists and websites were hand searched. Included were any consultations aimed at identifying research for the benefit of neonates, infants, children and/or young people (birth to age 25 years) with life-limiting, life-threatening or life-shortening conditions; their family, parents, carers; and/or the professional staff caring for them.Results:A total of 24 research prioritisation exercises met the inclusion criteria, from which 279 research questions or priority areas for health research were identified. The priorities were iteratively mapped onto an evolving framework, informed by World Health Organization classifications. This resulted in identification of 16 topic areas, 55 sub-topics and 12 sub-sub-topics.Conclusion:There are numerous similar and overlapping research prioritisation exercises related to children and young people with life-limiting conditions. By mapping existing research priorities in the context in which they were set, we highlight areas to focus research efforts on. Further priority setting is not required at this time unless devoted to ascertaining families’ perspectives.
Aim To identify child and parent outcomes relevant to having a gastrostomy, and to specify outcomes believed to be particularly salient to type of diet (formula vs blended food). Method Twenty parents, two children (both 12y), and 41 professionals (dietitians [n=10]; nurses [n=12]; paediatricians [n=12]; speech and language therapists [n=7)]) were recruited. Parents and children were interviewed; professionals participated in focus groups. Children (2–18y) represented included those on formula (n=11), blended‐food (n=7), and mixed (n=2) diets. All had been tube‐fed for at least 6 months. Neurological, genetic, and metabolic conditions were represented. Results Participants identified a range of children’s outcomes relevant to a gastrostomy, including physical health, gastrointestinal symptoms, sleep, and time spent feeding. The children described experiences of exclusion caused by being tube‐fed. Time, sleep, and emotional health were regarded as most salient to understanding parents’ gastrostomy outcomes. Participants believed type of diet would most likely effect gastrointestinal symptoms, time spent feeding, sleep, and physical health. Interpretation Findings indicate a number of refinements to, and allow further specification of, the current ‘initial’ core outcome set for tube‐fed children. Findings also have implications for choice of outcomes measures. Further qualitative research with children and young people is needed. Sleep is a key outcome for children and parents. Gastrointestinal symptoms and physical health were regarded as outcomes most likely to be affected by type of diet. Well‐being and participation were identified as key distal outcomes. Gastrostomies are complex interventions. Further specification of the core outcome set is possible.
IntroductionIncreasing numbers of children require having all, or part, of their nutritional intake via gastrostomy. More parents are using home-blended meals to feed their children, with many reporting beneficial effects such as improved gastro-oesophageal reflux, less constipation and less distress in their child.This study aims to identify the important outcomes of tube feeding in this population, compare the safety, outcomes and resource use of those on a home-blended diet compared with a formula diet and assess feasibility of long-term follow-up of children recruited to this study.Methods and analysesThis is a mixed methods study of children (aged 6 months to 18 years) who are gastrostomy feed dependent recruited via general, community and specialist paediatric and dietetic services. Workstream 1 (WS1): a qualitative study involving semistructured interviews with parents (n~20) and young people (n~5–10), and focus groups with health professionals (n~25), will provide evidence of appropriate outcome measures and the feasibility/acceptability of proposed data collection methods for WS2. It will gather data on: desired outcomes of gastrostomy feeding, variability in diets and reasons; use of oral feeding; perceived benefits of the alternative diets, resources associated with gastrostomy feeding and safety issues. Data will be analysed using thematic analysis. WS2: a cohort study of 300 children who are gastrostomy fed. Data will be collected at months 0, 9 and 18 from parents, children (if appropriate) and clinicians using standardised measures and questionnaires developed specifically for the study. Data collected will include gastrointestinal symptoms, health and other outcomes (child, parent), dietary intake, anthropometry, healthcare usage, safety outcomes and resource use. Outcomes in the home-blended and formula groups will be compared using appropriate multiple regression analyses.Ethics and disseminationThe study has been approved by a research ethics committee (REC reference: 19/YH/0028). Results will be disseminated through publications and presentations for professionals and families.Study registration number ISRCTN13977361.
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