Social Policy Research Unit Research Articles

Carer Needs Assessment Development - A Republic of Ireland led International Joint Working Project to Support Delivery of Integrated Health and Social Care

Despite an increasing share of societal income being used to deliver health and social care services, families accross the globe continue to provide upwards of 80% of the overall care delivered (Huber & Hennessy, 2005; Dieleman et al, 2016). Such carers often experience inadequate recognition of their unique and crucial role in keeping their care recipients well and at home, and in the wider scheme of sustaining national and international healthcare infrastructure. While family carers availability and willingness to provide care is crucial; stress, isolation and ill health are frequently experienced;all of which may impact on their quality of life and ability to care, and further may impact on the availability of this under resourced pool of caregivers into the future. Identifying the needs of family carers is increasingly being viewed as a key intervention in the development of fully integrated health and social care (Guberman et al, 2007). The positive impact of such assessments to carers is wide and varied, particularly in reducing their burden of stress and depressive symptoms (Guberman et al, 2003; Becker et al, 2005; Kwak et al, 2011). Internationally, Carer Needs Assessments (CNA's) have been enshrined in law in the UK for over 20 years and are significantly embedded in assessment processes; while in the US in particular- there has been some legislative initiatives to bring Family Carers closer to the centre of care. This paper discuses the Carer Needs Assessment Development Project and presents preliminary findings on Irish data from the Carer Needs Assesment international pilot study. In giving expression to the Irish National Carers Strategy which seeks to work with Family Carers as partners in care (Department of Health (IRL), 2012), the HSE Single Asessment Tool (SAT) Project established a collaborative Working Group to develop a Carer Needs Assessment for national and international use. This group comprised of HSE SAT national team members, not-for profit national Carer/Advocacy Organisations (NGOs),and the international not-for-profit organisation ‘interRAI™’ who specialise in evidence-based assessment systems development. The Working Group are developing a CNA, initially paper based, which is currently being piloted with adult family carers in a longitudinal study across 11 countries, including Ireland, in order to finalise the tool. Once the pilot is complete, the CNA will be available as part of the interRAI integrated suite of assessment tools which are in use Ireland and internationally in an electronic format across health care settings. The target population for the pilot study are adult family carers who are providing an ongoing and significant level of care to an older person person who is in need due to illness, disability, or frailty. A family carer can be a relative, friend or neighbour. Approximately 600 Family Carers will be recruited internationally. The final potential target population in Ireland is all Family Carers who provide significant levels of care. This initiative is innovate as it represents a first between a state health agency, a number of not-for profit agencies and a leading academic health care assessment systems design collaboration (interRAI), in developing, testing and (potentially) implementing a comprehensive standardised assessment tool. Current models of CNA have not been exposed to sufficiently comprehensive evaluation. This paper charts the progression and challenges of this initiative, using an Implementation Science Framework. There will be a discussion on the learnings from the process together with a wider assessment of the future potential for Carer Needs Assessments in general.

Updated meta-review of evidence on support for carers

BackgroundPolicy and research interest in carers continues to grow. A previous meta-review, published in 2010, by Parkeret al.(Parker G, Arksey H, Harden M.Meta-review of International Evidence on Interventions to Support Carers. York: Social Policy Research Unit, University of York; 2010) found little compelling evidence of effectiveness about specific interventions and costs.ObjectiveTo update what is known about effective interventions to support carers of ill, disabled or older adults.DesignRapid meta-review.SettingAny relevant to the UK health and social care system.ParticipantsCarers (who provide support on an unpaid basis) of adults who are ill, disabled or older.InterventionsAny intervention primarily aimed at carers.Main outcome measuresAny direct outcome for carers.Data sourcesDatabase searches (including Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, MEDLINE, Applied Social Sciences Index and Abstracts and Social Care Online) for systematic reviews published from January 2009 to 2016.Review methodsWe used EndNote X7.4 (Thomson Reuters, CA, USA) to screen titles and abstracts. Final decisions on the inclusion of papers were made by two reviewers independently, using a Microsoft Excel®2013 spreadsheet (Microsoft Corporation, Redmond, WA, USA). We carried out a narrative synthesis structured by patient condition and by seven outcomes of interest. We assessed the quality of the included systematic reviews using established criteria. We invited a user group of carers to give their views on the overall findings of our review.ResultsSixty-one systematic reviews were included (27 of high quality, 25 of medium quality and nine of low quality). Patterns in the literature were similar to those in earlier work. The quality of reviews had improved, but primary studies remained limited in quality and quantity. Of the high-quality reviews, 14 focused on carers of people with dementia, four focused on carers of those with cancer, four focused on carers of people with stroke, three focused on carers of those at the end of life with various conditions and two focused on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasising psychosocial or psychoeducational content, education and training. Multiple outcomes were explored, primarily in mental health, burden and stress, and well-being or quality of life. Negative effects following respite care were unsupported by our user group. As with earlier work, we found little evidence on intervention cost-effectiveness. No differences in review topics were found across high-, medium- and low-quality reviews.LimitationsThe nature of meta-reviews precludes definitive conclusions about intervention effectiveness, for whom and why. Many of the included reviews were small in size and authors generally relied on small numbers of studies to underpin their conclusions. The meta-review was restricted to English-language publications. Short timescales prevented any investigation of the overlap of primary studies, and growth in the evidence base since the original meta-review meant that post-protocol decisions were necessary.ConclusionsThere is no ‘one size fits all’ intervention to support carers. Potential exists for effective support in specific groups of carers. This includes shared learning, cognitive reframing, meditation and computer-delivered psychosocial support for carers of people with dementia, and psychosocial interventions, art therapy and counselling for carers of people with cancer. Counselling may also help carers of people with stroke. The effectiveness of respite care remains a paradox, given the apparent conflict between the empirical evidence and the views of carers.Future workMore good-quality, theory-based, primary research is warranted. Evidence is needed on the differential impact of interventions for various types of carers (including young carers and carers from minority groups), and on the effectiveness of constituent parts in multicomponent programmes. Further research triangulating qualitative and quantitative evidence on respite care is urgently required. The overlap of primary studies was not formally investigated in our review, and this warrants future evaluation.Study registrationThis study is registered as PROSPERO CRD42016033367.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Young people with high‐functioning autism and Asperger's syndrome planning for and anticipating the move to college: what supports a positive transition?

For many young people in England, the move into continuing education involves a transfer from the school where they were educated to a further education college. For those with high‐functioning autism or Asperger's syndrome, this can be a challenging process. Past research has demonstrated some of the problems that these young people can encounter. This article byWendyMitchell andBryonyBeresford, both based in the Social Policy Research Unit at the University ofYork, adds to the evidence base by describing how best to support these young people, focusing specifically on ‘young person endorsed’ practice. Data are gleaned from qualitative interviews with 18 young people with high‐functioning autism/Asperger's syndrome. Findings reveal that young people welcomed the involvement of practitioners; however, specific forms of help and knowledge were particularly valued. In addition, it was parents, as opposed to professionals, who typically emerged as the most significant and valued source of support. Implications for practice are discussed, including the support needs of parents.

The undeserving rich: American beliefs about inequality, opportunity, and redistribution

It is widely assumed that Americans care little about income inequality, believe opportunities abound, admire the rich, and dislike redistributive policies. In her talk, Leslie McCall shows how such assumptions are based on misleading survey data and economic conditions rooted in the past. Using data from the General Social Survey, a systematic analysis of media coverage from 1980 to 2010, and other sources, she provides evidence that Americans have long desired less inequality, becoming most concerned about it in times of inequitable growth, when they view the rich as prospering while opportunities for good jobs, fair pay, and high quality education are restricted for everyone else. This suggests that Americans do not pit equality of opportunity against equality of outcomes, favoring only the equality of opportunity, as is widely assumed, but see the two as interconnected. As a result, they favor policies to expand opportunity and redistribute earnings in the workplace, reducing inequality in the market rather than redistributing income after the fact with tax and spending policies. McCall helps to resolve the paradox of how Americans can express little enthusiasm for welfare state policies and yet still yearn for a more equitable society. She also forwards a new model of preferences about income inequality rooted in labor market opportunities rather than welfare state policies. Leslie McCall is Professor of Sociology and Political Science, as well as Faculty Fellow at the Institute for Policy Research, at Northwestern University. She is the author of Complex Inequality: Gender, Class, and Race in the New Economy (2001). The lecture is organized by David Brady, Head of the newly established Inequality and Social Policy research unit at the WZB.

Identifying the types of technology that are used by children with intellectual disabilities and associated complex needs living at home in Ireland

Accessible summary This research indentifies the types of technology children with complex needs use at home. Many types of equipment were identified. Parents need support in using this equipment. SummaryWithin the literature, there is evidence that caring for children with complex needs, however defined, includes the management of equipment and resources (Child Care Health Dev, 2001, 27, 321; Technology Dependent Children and Family Life. Research Works, University of York, UK, Social Policy Research Unit, 2003; Journal of Specialists in Pediatric Nursing, 2007, 12, 72; Caring for Children with Complex Needs in the Community, Oxford, Blackwell Publishing, 2008). The objectives of this mixed method study were to identify the range of technology used by children with complex needs and identify issues of concern for parents. Data were collected using a specifically designed questionnaire that was developed with experts. The questionnaire was subsequently administered by telephone survey and personal contact with parents of children with complex needs. Findings indicated that children with intellectual disabilities* and associated complex needs require the use of high levels of technology** to maintain their health and well‐being. On average, families identified that 22 pieces of equipment were used by their child. This study is significant in identifying technology used in the home for the care of children with intellectual disabilities and associated complex needs. Associated issues concerning the use and management of this technology have been highlighted. Areas in need of development include provision of supporting mechanisms for parents to meet the daily requirements of their child in the home.

Partnership working and outcomes: do health and social care partnerships deliver for users and carers?

Working in partnership, both across social care and health and with service users, has been a persistent theme of the health and social care modernisation agenda in the United Kingdom. Despite a relatively underdeveloped evidence base, the development of health and social care partnerships has continued to feature in recent policy and legislative initiatives in the United Kingdom. At the same time there has been a major shift in focus towards the outcomes that support services deliver. A central question remaining is whether the policy initiatives driving the development of health and social care partnerships are delivering improved outcomes, particularly the outcomes valued by people who use services. This article outlines research designed to explore this issue across 15 health and social care partnerships in England and Scotland, building from previous research by the Social Policy Research Unit based at the University of York. It sought to assess the extent to which health and social care partnerships deliver the outcomes that people who use services value, and to determine the features of partnership working associated with the delivery of these outcomes. A robust outcomes framework was defined, which provided the basis for interviews with those receiving support from partnerships. Working with three user-researcher organisations, interviews were completed with 230 individuals in 2006. On the basis of this, some service users were able to identify features of partnership that particularly contributed to improved outcomes. These included continuity of staff and sufficient staff and a range of resources, including the availability of long-term and preventative services. Given the definitional and methodological complexity surrounding partnership working, and the challenges of attribution, the study faced some limitations in its ability to make wider inferences about partnership and outcomes. A theory of change should be employed in future studies of this type.

A new dedicated mental health service for deaf children and adolescents

A National Deaf Child and Adolescent Mental Health Service (CAMHS) was launched in England in October 2009. This new service commissioned by the National Commissioning Group was centrally funded after a successful pilot between 2004 and 2009 that was evaluated positively by the Social Policy Research Unit at York University in England using both qualitative and quantitative research. The new service has four main centres in London, York, Dudley and Taunton. Staff from these centres work into six additional local CAMHS centres to give good geographical coverage. These are based in: Newcastle; Manchester; Cambridge; Maidstone; Oxford; and Nottingham. The service provides assessment and interventions for severe to profoundly deaf children and young people with serious child mental health problems. The service uses innovative communication technologies such as teleconferencing, texting and webcam as well as traditional provision of clinical services in clinics, home and school visits. Users and carers will have an ongoing say in service development.

The National Service Framework for children, young people and maternity services: developing the evidence base

Child: Care, Health and DevelopmentVolume 30, Issue 6 p. 567-570 The National Service Framework for children, young people and maternity services: developing the evidence base P. Sloper, Corresponding Author P. Sloper Social Policy Research Unit, University of York, Heslington, York, andProfessor Patricia Sloper, Social Policy Research Unit, University of York, Heslington, York YO10 5DD, UK E-mail: ps26@york.ac.ukSearch for more papers by this authorJ. Statham, J. Statham Thomas Coram Research Unit, Institute of Education, University of London, UKSearch for more papers by this author P. Sloper, Corresponding Author P. Sloper Social Policy Research Unit, University of York, Heslington, York, andProfessor Patricia Sloper, Social Policy Research Unit, University of York, Heslington, York YO10 5DD, UK E-mail: ps26@york.ac.ukSearch for more papers by this authorJ. Statham, J. Statham Thomas Coram Research Unit, Institute of Education, University of London, UKSearch for more papers by this author First published: 04 November 2004 https://doi.org/10.1111/j.1365-2214.2004.00484.xCitations: 8Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat Citing Literature Volume30, Issue6November 2004Pages 567-570 RelatedInformation

Understanding and Using Outcomes in Social Care, Elinor Nicholas, Hazel Qureshi and Claire Bamford, York, Social Policy Research Unit (University of York), 2003, pp. viii + 151, ISBN 1 8717 1362 5, part of the Outcomes into Practice training pack, priced at 90.00

Journal Article Understanding and Using Outcomes in Social Care, Elinor Nicholas, Hazel Qureshi and Claire Bamford, York, Social Policy Research Unit (University of York), 2003, pp. viii + 151, ISBN 1 8717 1362 5, part of the Outcomes into Practice training pack, priced at £90.00 Get access Neil Thompson Neil Thompson Director Avenue Consulting Ltd Search for other works by this author on: Oxford Academic Google Scholar The British Journal of Social Work, Volume 34, Issue 7, October 2004, Pages 1069–1070, https://doi.org/10.1093/bjsw/bch146 Published: 01 October 2004

Make Outcomes your Big Idea: Using Outcomes to Refocus Social Care Practice and Information

This paper explores how a research‐based understanding of outcomes in social care can be incorporated into practice. Drawing on research by the Social Policy Research Unit and the practical experience of North Lincolnshire Social Services Department, this paper highlights how culture change and the involvement of stakeholders are key to using outcomes ideas as a motivational framework for service improvement.

Morale and quality of life among frail older users of community care: Key issues for the success of community care

Many social services departments have successfully developed services which meet older people's physical survival needs so that they can continue living in their own homes despite serious disabilities. An emerging priority is to support the morale and quality of life of the same individuals.Assisted by the Social Policy Research Unit (SPRU), a team of social services managers conducted a programme of interviews designed to obtain the views of very old, frail home care clients about their services and their lives in general. A few interviewees expressed very low morale and this seemed to reduce substantially their ratings of satisfaction with the help they received. While it is well established that disability and isolation are linked to depression in older people, it is rare that service providers systematically address these problems. Some practical strategies for this purpose are proposed as a result of this survey.

Outcomes of social care for adults: attitudes towards collecting outcome information in practice.

This paper discusses the findings of three studies of perspectives on social care outcomes undertaken by the Social Policy Research Unit (SPRU) at the University of York. The findings are related to conceptual and policy issues relevant to the idea of using outcome information in assessing performance. Respondents were managers in social services, academics, and organizations of disabled people, older people and carers. People gave their views on why outcomes were important, and what they perceived as the obstacles to implementing ways of looking at outcomes in routine or regular practice in social care. In principle, attitudes towards the collection and use of outcome information were overwhelmingly positive: results for service users and carers were at the heart of 'authentic' ideas of effectiveness, and were potentially of value in improving accountability and informing the decisions and activities of both purchasers and providers. However, a number of obstacles to implementing practical systems were identified including conceptual and technical issues, professional and organizational culture, resource constraints and the emphasis on assessment at the expense of review.

Book Reviews

Book Reviews Get access Understanding Family Care: A Multidimensional Model of Caring and Coping, Mike Nolan, Gordon Grant, John Keady, Buckingham, Open University Press, 1996, pp. 194, ISBN 0 335 19574 1, £12.99. RAMPAUL CHAMBA RAMPAUL CHAMBA Ethnicity and Social Policy Research Unit, University of Bradford Search for other works by this author on: Oxford Academic Google Scholar The British Journal of Social Work, Volume 27, Issue 6, December 1997, Pages 981–983, https://doi.org/10.1093/oxfordjournals.bjsw.a011294 Published: 01 December 1997

Review Article

Review Article COMMUNITY CARE AND THE VOLUNTARY SECTOR, Paul Reading, Venture Press, 1995, 102pp. ENCOURAGING DIVERSITY: VOLUNTARY AND PRIVATE ORGANISATIONS IN COMMUNITY CARE, Marilyn Taylor, Joan Langan, Paul Hoggett, Arena, 1995, 103 pp. ORGANISATIONAL DEVELOPMENT IN THE COMMUNITY: APPLICATION, TOOLS AND DISCUSSION, Brian Batson and Jerry Smith, International Social Policy Research Unit, Leeds Metropolitan University, 1995, 71 pp. Mark Redmond Mark Redmond Mark Redmond is a youth and community work practitioner in Plymouth Search for other works by this author on: Oxford Academic Google Scholar Community Development Journal, Volume 32, Issue 1, January 1997, Pages 100–103, https://doi.org/10.1093/cdj/32.1.100 Published: 01 January 1997

Implementing the Children Act: The Regulation of Day-care Services for Young Children

This article presents the findings of the first stage of a study undertaken by the Thomas Coram Research Unit at the University of London for the Department of Health. The study aims to monitor and evaluate the implementation of Parts III and X of the Children Act, which relate to the provision of dhy-care and pre-school education for children under eight. The article reports the findings of the first stage of the study on the aspects of implementation involved in the regulation of children's services, which is one of the most significant of the changes heralded by the Act for under-eights' services. Based on the findings of a study in eighteen English authorities and eight Welsh counties, the article outlines the different approaches taken to regulation in terms of organizational structures, degree of consultation with providers, and overall approach to implementing the new system. The response of providers as reported by local authority staff is also discussed. The findings of the study are set in the context of the current policy debate about the role of regulation and the status of the recommendations in the Guidance accompanying the Act. As well as outlining the degree of vanation found among authorities and indicating some of the ‘pressure points’ in implementation, the article raises issues of critical concern about the role of regulation in the context of the private market of day-care provision.

Reviews Section

Journal Article Reviews Section Get access INVOLVING OLDER PEOPLE IN PLANNING AND EVALUATING COMMUNITY CARE: A REVIEW OF INITIATIVES, Patricia Thornton and Rosemary Tozer, Social Policy Research Unit, University of York, York, UK, 1994, 105pp., £7.50. OLD AGE AND THE SEARCH FOR SECURITY, Carole Haber and Brian Gratton, Indiana University Press, Bloomington and Indianapolis, 1994, 231pp., £27.50 (hb.), £13.99 (pb.). George Giarchi George Giarchi Emeritus Professor of Social Care, University of PlymouthUK Search for other works by this author on: Oxford Academic Google Scholar Community Development Journal, Volume 31, Issue 1, January 1996, Pages 94–95, https://doi.org/10.1093/cdj/31.1.94 Published: 01 January 1996

Editorial

It has been no secret that professional rivalries between the ‘traditional’ community nurse and the ‘new’ practice nurse intensified as the number of practice nurses increased in the first half of this decade. Despite major progress being made in this area, new research, ‘Nurses in practice: the role of the practice nurse in primary health care’ (1) from York University’s Social Policy Research Unit revealed that community nurse providers,commissioning agencies and FHSAs were concerned that the current GP management of practice nurses worked against a more strategic use of the whole primary care nursing resource.

The role of the continence adviser in England and Wales

Continence advice in England and Wales is a relatively new specialism within nursing and, over the past 20 years, the number of continence advisers has grown substantially. There are, however, no formal qualifications for the role and the service has grown up in a piecemeal fashion. A study carried out by the Social Policy Research Unit of the University of York sought to answer basic quantitative questions about: (1) the number of continence advisers in post, their professional backgrounds and so on; (2) the structures within which continence advisers work; and (3) the nature of their current practice; as well as more attitudinal and developmental questions about the history and future development of continence advisers' work.

Social Policy Digest

In November, the Secretary of State for Social Security announced that benefits would be uprated in line with inflation in April 1995. However, since 1979, there has been a widening gap between the incomes of poor and wealthier households (94—24/2—1.1). A report from the Social Policy Research Unit (SPRU) highlights government failure to uprate benefits in line with earnings as contributing to this growing inequality. Figures produced by the Government Statistical Service on the estimated take-up of incomerelated benefits for 1992 claim that more than four out of five of those eligible claim some £9 out of £10 of the available cash. The figures for family credit show a steady increase in take-up from 57 per cent of the caseload in 1988–9 to 66 per cent in 1991–2. Income support figures suggest that the take-up is now between 77 and 87 per cent.

A postal survey of continence advisers in England and Wales.

Improved continence services have been identified as a purchasing priority for 1994-1995. A key figure in the continence team is the nurse continence adviser. However, although the Association for Continence Advice in the United Kingdom offers a set of guidelines for the role of continence adviser, the extent to which these were implemented across the country was unknown. In 1991, the Department of Health commissioned the Social Policy Research Unit of the University of York, England, to carry out a postal survey of all known continence advisers in England and Wales in order to provide basic quantitative information about the number of advisers in post, their professional qualifications, the structures in which they worked, and the nature of current practice. In this paper a brief resumé of some of the main findings from the survey, which included both quantitative and qualitative data, is presented. The role of the continence adviser as a clinical nurse specialist and some of the implications for current practice are also discussed.