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Homecare is generally understood to refer to services that support people to continue living in their own homes. Older people are the primary users and many countries report an increase in the number using homecare services and greater spending on such provision, driven in part by investment in 'ageing in place' policies. Despite this, and reflecting social care more generally, homecare is relatively under-researched. However, in the UK at least, there is growing interest and investment in social care research. In order that this investment is not wasted, it is essential that research addresses what stakeholders identify as research priorities. This study reports work undertaken in the UK during 2021/22 to identify research priorities for homecare for older people, and a broad scoping of existing evidence. A two-stage consultation process was used. First, topic areas for research were identified through consultations with stakeholders. Second, a survey ascertained agreement and differences between groups regarding the relative importance of topic areas as research priorities. Over 50 people participated including older people (n = 7), family members (n = 11), homecare workers (n = 16), homecare providers (n = 9) and national policy, evidence and advocacy leads (n = 13). Twenty discrete research topic areas were identified. Only one topic area (Joint working between homecare and health services) was a 'Top 5' research priority for all stakeholder groups. Timely engagement with homecare and Workforce: recruitment and retention were 'Top 5' priorities for three stakeholder groups. Scoping of existing research indicates that topic areas receiving the most research attention to date are not among those identified as being of high priority for research. To our knowledge, this is the first time research priorities for homecare have been generated. Findings will be of value to research funders, organisations using research evidence and the research community., (© 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Reablement - or restorative care - is a central feature of many western governments' approaches to supporting and enabling older people to stay in their own homes and minimise demand for social care. Existing evidence supports this approach although further research is required to strengthen the certainty of conclusions being drawn. In countries where reablement has been rolled out nationally, an additional research priority - to develop an evidence base on models of delivery - is emerging. This paper reports a prospective cohort study of individuals referred to three English social care reablement services, each representing a different model of service delivery. Outcomes included healthcare- and social care-related quality of life, functioning, mental health and resource use (service costs, informal carer time, out-of-pocket costs). In contrast with the majority of other studies, self-report measures were the predominant source of outcomes and resource use data. Furthermore, no previous evaluation has used a global measure of mental health. Outcomes data were collected on entry to the service, discharge and 6 months post discharge. A number of challenges were encountered during the study and insufficient individuals were recruited in two research sites to allow a comparison of service models. Findings from descriptive analyses of outcomes align with previous studies and positive changes were observed across all outcome domains. Improvements observed at discharge were, for most, retained at 6 months follow-up. Patterns of change in functional ability point to the importance of assessing functioning in terms of basic and extended activities of daily living. Findings from the economic evaluation highlight the importance of collecting data on informal carer time and also demonstrate the viability of collecting resource use data direct from service users. The study demonstrates challenges, and value, of including self-report outcome and resource use measures in evaluations of reablement., (© 2019 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.)

Patient or user engagement with health and social care interventions is receiving increased attention and interest within practice settings and research. An English evaluation of three reablement services wished to include a measure of user-engagement so as to explore its association with outcomes. As no measure of reablement engagement existed, an existing measure designed for use with physical rehabilitation patients (the Hopkins Rehabilitation Engagement Rating Scale) was adapted and its psychometric properties were tested. The adapted version was completed by reablement staff at the time an individual (n = 129) was discharged from one of the three reablement services. Outcomes data (Barthel Index, Nottingham Extended Activities of Daily Living Scale, General Health Questionnaire-12) collected by the evaluation study at baseline (that is, at entry into reablement), discharge and 6 months postdischarge was used for some psychometric testing. Internal consistency and construct, predictive and discriminant validity were investigated. The adapted scale measured a single construct and had good internal consistency. Tests of predictive and discriminant validity were positive. Findings from a separate, small-scale (n = 31) test-retest study offer an early indication that this is acceptable. There was, however, evidence of a ceiling effect and we consider ways this may be ameliorated. The Hopkins Rehabilitation Engagement Rating Scale - Reablement Version offers a means by which user engagement in reablement can be measured using a staff-completed instrument. The association between engagement and reablement outcomes, revealed when testing for predictive validity, supports the argument for greater attention and investment in research on user engagement in reablement. More broadly, researching engagement within the context of an intervention often delivered by multiple practitioners offers the opportunity to further understand this concept which, in the past, has particularly focused on interventions delivered by a single practitioner. In addition, future work should include developing a companion measure completed by service users., (© 2018 John Wiley & Sons Ltd.)

Little is known about the decision-making processes that take place within families when a disabled young person is moving on from full-time education and, particularly, parents' roles and experiences. This paper reports the analysis of data collected from a subsample of parents (representing seventeen families) participating in the Choice and Change Project who had discussed choices associated with their child leaving full-time education. (The Choice and Change Project is a longitudinal, qualitative study of choice-making by four different groups of service users including disabled young people with degenerative conditions and their parents.) The data were collected from parents during up to three semi-structured interviews conducted over a thirty-month period. Descriptive theories of decision-making informed the analysis. Parents differed in the extent to which they were actively involved in making choices about the 'destination' of their child after leaving full-time education. To some extent, the ability of the young person to make choices themselves influenced this. Parents who were assuming responsibility for making choices stressed the importance of having relevant information and felt professionals had a key role to play in supporting access to information. Parents used a number of criteria to guide their choice-making, including distance from home, perceived quality of the environment and staff and the young person's responses to the setting. Much of the information needed to make a choice required a visit to all the possible options. Ensuring such visits were positive and useful experiences for themselves and their child could be very difficult; support to achieve these visits was highly valued but not routinely provided. The study also highlights the lack of recognition given to the significant amount of work that many parents undertake to ensure that a choice is realised, and also to the emotional journey parents take when making or assisting in such decisions., (© 2012 Blackwell Publishing Ltd.)

Satisfaction with service-related choices has not received much research attention, especially beyond medical/health-related decisions. This paper reports findings from an analysis of parents' accounts of making service-related choices with, or on behalf of, a disabled son or daughter with a degenerative condition. It focuses particularly on factors and processes, which contribute to parents' satisfaction. This is particularly interesting given that sub-optimal outcomes or negative consequences are often experienced following a service-related choice being implemented. The data reported here were collected as part of a larger, longitudinal study (the Choice and Change project) of service users' experiences of choice-making, including the outcomes and consequences of those choices. Parents of disabled young people with degenerative conditions formed part of this sample. The accounts of 14 of these parents, collected over three interviews during a two and a half-year period, all of whom expressed satisfaction with the medium- to long-term outcomes of a service-related choice, were selected for specific analyses to understand what underlies satisfaction with service-related choices. Clarity of the desired outcome for the young person supported effective decision-making and led parents to feel confident that the best possible choice was being made. Evidence of desired outcomes being attained were used by parents to 'trade off' the negative consequences of a choice. These included the considerable demands placed on parents' personal, financial and practical resources to operationalise a choice, and the emotional impact incurred by significant changes such as the loss of the carer role. The passage of time was important in allowing evidence of positive outcomes to emerge, psychological or emotional adjustments to be made, and for parents to develop trust in new service providers. The findings suggest that practitioners can have an important role in both practical and emotional support for parents' choice-making for, or with, their disabled son/daughter., (© 2012 Blackwell Publishing Ltd.)

Within recent policies and initiatives, there is a growing emphasis on outcomes-focused practice and user-defined outcomes to ensure that the children and families most at risk of social exclusion have every opportunity to build successful and independent lives. However, we still know little about what children and young people with disabilities consider constitutes a good quality of life. The present paper reports the findings of a qualitative research project that aimed to identify the desires and aspirations of children and young people with complex health care needs (CHNs), as well as those who do not use speech for communication (NS) and their parents. Fifty families participated in this study; 26 families had a child with CHNs and 24 had a child with NS. Semistructured interviews were carried out with 50 parents, 18 children and 17 other informants (teachers and other non-parent carers who knew the child well). A range of visual or non-verbal techniques were used to facilitate interviews with children. The research found that, while children and their parents aspired to the same sort of outcomes as those of non-disabled children, such as to have friends, interests and future independence, the specific meaning they attached to certain outcomes and the way they prioritised aspirations differed. These findings have implications for the ways in which outcomes are defined and measured, and the role of services in achieving these outcomes.