An Outcomes Focus in Carer Assessment and Review: Value and Challenge

Correspondence to Elinor Nicholas, Research Fellow, Social Policy Research Unit, University of York, Heslington, York YO10 5DD, UK. E-mail: en2{at}york.ac.uk Summary A focus on outcomes and a desire to improve assessment and supportto carers are central to government policy, crystallized inthe 2000 Carers and Disabled Children Act. This paper exploresthe benefits and challenges of implementing an outcomes approachto carer assessment and review, highlighted by a research anddevelopment project, undertaken in partnership with one localauthority. The project developed and tested research-based practicetools which aimed to promote carer-centred practice, togetherwith clarity in communication and recording of outcomes intendedand achieved. Findings indicated that practice could be enhancedwith the help of a clear conceptual framework and tools, flexiblyand sensitively used to assist discussion and decision-makingwith carers about outcomes. Information about outcomes, aggregatedfrom individual records, was perceived as potentially usefulfor informing service development. Some significant obstaclesand challenges also emerged; not least, the subtle but significantculture shift required, and the additional time needed to effectivelyidentify and address outcomes with carers. A number of factorswere highlighted as important in introducing such an approach:collaboration with, and between, all stakeholders; trainingand support for practitioners to include practice in recordingoutcomes, and opportunities for continuing discussion and reflectionduring implementation.     

A Model for the Comprehensive Assessment of Older People and Their Carers

Correspondence to Beverley Hughes, Department of Social Policy and Social Work, University of Manchester, Oxford Road, Manchester M13 9PL. Summary Although local authorities and social service departments arein the process of developing systems of assessment in relationto care management, there has been little debate about the principleswhich ought to underpin assessment processes, nor about thepurpose, scope, and content of comprehensive assessment witholder people. This article discusses these issues and proposesa framework for comprehensive assessment with older people andtheir carers, derived from development work with social workersin a number of local authorities. Of particular importance isthe need for comprehensive assessment to embody meaningful mechanismsfor user and carer participation and empowerment; to acknowledgenot only need and risk but strengths and resources; to regardthe older person as the centre of a network of personal, familial,and social factors which together determine her or his qualityof life and level of risk. The implications for practitionersare examined.     

Ambiguity and User Involvement: Issues Arising in Assessments for Young People and their Carers

Correspondence to Peter R. Day CRSP, Department of Social Sciences, Loughborough University of Technology, Loughborough, Leicestershire LE 11 3TU. Summary Issues for service users and professional staff arising fromcontemporary community care policies emphasizing user involvementare reviewed. Against the background of a key expression ofthese policies, the Disabled Persons' Act of 1986, methods ofproviding assessments involving young people with learning disabilitieswere analysed. Problems identified for further study includeddifficulties arising for young people due to lack of experienceand immaturity, the low expectations of their parents or carers,problems arising from the culture of services and how assessmentsmay be developed which provide seriously disabled users themselveswith ways of expressing their wants and needs.     

Carer Break or Carer‐blind? Policies for Informal Carers in the UK

This article examines three policy statements on informal carers published in the UK in 1999—the National Strategy for Carers, the report of the Royal Commission on Long Term Care and the note of dissent by two members of the Royal Commission. These three documents contain two rather different approaches to policy for carers. On the one hand, the National Strategy and note of dissent emphasize respite care or short-term breaks for carers, and are concerned with sustaining the well-being of carers as well as ensuring the continuation of caring itself. The Royal Commission, on the other hand, emphasizes support for the older or disabled person who is being cared for, as a means of supporting the carer, and advocates "carer-blind" services. It is argued that this policy contains within it the potential to substitute for or replace the carer and that this represents a radical new departure for social policy for carers in the UK. The advantages and disadvantages of the two policy approaches are explored. It is argued that policies for carers should include both services specifically for carers, like breaks from caring, and services provided for the cared-for person, like domestic and personal care services. Wider issues about the proper boundary between family and state care are explored.     

Assessing the Barriers to Achieving Genuine Housing Choice for Adults with a Learning Disability: The Views of Family Carers and Professionals

It has been reported that the capability of adults with a learningdisability to choose their housing is too often impeded by theviews and actions of their family carers and involved professionals(McGlaughlin and Gorfin, with Saul, in press). This study furtherexplores these apparent barriers to providing genuine housingchoice for adults with learning disabilities. It discusses findingsfrom a series of focus groups which explored family and professionalviews about housing and choice. The views expressed indicatethat risk is a fundamental concern for both professionals andfamilies when considering more independent housing for thisgroup. Although opportunities for choice were generally supported,many argued for the need to assess the ability to make informeddecisions. There were also examples of problematic relationshipsbetween professionals and carers, creating a barrier to choice.Carers need involvement, information and support during thedevelopment of housing plans if the needs of the primary serviceusersare to be met. The barriers identified have to be removed ifservice-users are to truly become the focus of decisions andbe enabled to make genuine informed choices.     

Matches and Mismatches: The Contribution of Carers and Children to the Success of Foster Placements

Correspondence to Professor Ian Sinclair, Social Work Research and Development Unit, University of York, York YO10 5DD. E-mail: acs5{at}york.ac.uk Summary Data were collected on 472 foster children at an interval of14 months. The children's social workers, the family placementsocial workers and the foster carers reported on disruptions,and the reasons for placement success or lack of it. These views,combined with comments from the children, led to hypothesesabout the origins of successful placements. Statistical testsof these hypotheses suggested that success depended on threeaspects of the placement. First of these was the children'scharacteristics. Children, who wanted to be fostered (had attractivecharacteristics and low levels of disturbance), did better.Second were the qualities of the foster carer. Placements withwarm, child-oriented carers were more successful. Third wasthe interaction between carer and child. The findings emphasizethe crucial importance of the foster carers to outcomes. Theyalso support the need to pay close attention to children's views,and the potential importance of early intervention to preventnegative spirals of interaction between carer and child.     

Man-made Care: Community Care and Older Male Carers

Correspondence to Mike Fisher, Department of Social Work, University of Bristol, 8 Woodland Road, Bristol BS8 1TN. Summary Recent evidence about the extent of caring for older peopleby older people themselves, and about the importance of spousecare, has challenged existing debates about gender and care.Male carers, particularly older husbands, have been ‘discovered’.This paper attempts to reconceptualize the debate about genderand caring to take account of these developments, particularlyto develop an understanding of the caring activities of oldermale carers and to elaborate the implications for communitycare policy. The evidence suggests there are circumstances where men acceptthe obligation to care, undertake intimate personal care, andderive identity and reward from their caring work, driven bysimilar motives and experiencing similar struggles as women.Rather than seeking maximum distinction between the motivesand experiences of women and men carers, the paper suggeststhat one important way to promote non-sexist community careis to explore the conditions where men's caring is undertakenand how it can be understood and developed.     

A Profile of Adult Placement Carers

Correspondence to Andrew Gage, Manchester City Council Social Services Department, Adult Homefinding Team, Fenham, 5 Moorfield Road, West Didsbury, Manchester M20 8UZ. Summary This study examines the social and personal characteristicsof the people providing support in their own homes (adult fostering)to people with severe learning disabilities. Comparisons aremade with the general population on social and personal areas.A typical carer is identified and the results lead into issuescurrently affecting carers. Links are drawn between carer characteristicsand service user quality of life which require further study.     

What is a person‐centred approach? Familiarity and understanding of individualised funding amongst carers in New South Wales

Person‐centred approaches place individuals with a disability at the centre of decision making, with their carers and family invited to be partners in the process. Rather than being required to fit within existing service programs, person‐centred approaches enable individuals to choose the support options that best meet their needs. In order to facilitate this, person‐centred approaches will be accompanied by the introduction of individualised funding. This means the individual will be provided with funding to purchase services of their choosing. Given these significant changes occurring in the disability sector, Carers NSW surveyed informal carers of people with a disability to identify what they knew about person‐centred approaches and how they felt about their introduction. Survey results indicate that there is a need to increase the capacity and willingness of carers significantly in order to engage with person‐centred approaches and individualised funding. Carers require targeted and comprehensive information about these concepts in order to understand fully the changes occurring within the disability sector. These findings also indicate specific areas that need to be addressed in order to increase carers' awareness of these concepts and also to address existing negativity and confusion.     

Asian Carers' Experiences of Medical and Social Care: The Case of Cerebral Palsy

Correspondence to Ghazala Mir, University of Leeds, Centre for Research in Primary Care, Nuffield Institute for Health, Hallas Wing, 71–75 Clarendon Road, Leeds LS2 9PL, UK. E-mail: g.mir{at}leeds.ac.uk Summary This paper discusses the experience of South Asian carers ofa person with cerebral palsy. Previous research in this areahas failed to explore carers' perceptions of causation or theirviews on the quality of service support. Qualitative interviewswere carried out with twenty carers in two localities in thenorth of England with the aim of providing in-depth contextualizeddata on their experiences over time, their attitudes towardscerebral palsy and their interactions with service provision.Results show that parents' views on causation differ markedlyfrom explanations based on a medical, genetic model of cause.Parental attitudes towards cerebral palsy are shown to be influencedboth by interactions with service professionals and by parents'ability to manage their situation. The absence of adequate materialand emotional resources may foster a negative construction ofdisability by parents that, in turn, has detrimental effectson the individual with cerebral palsy. Parents' religious beliefscan act as a source of emotional support that helps them developa constructive perspective on disability and deal with futureuncertainty. We conclude that developments in service provisionneed to build on the perspectives of South Asian individualsand communities to respond effectively to their needs.     

Informal Carers of Adolescents and Adults with Learning Difficulties from the South Asian Communities: Family Circumstances, Service Support and Carer Stress

Corrrespondence to Chris Hatton, Research Fellow, Hester Adrian Research Centre, University of Manchester, Manchester M13 9PL, UK. Summary On the basis of a total identification survey in two metropolitanboroughs, 54 people from the south Asian communities caringfor people with learning difficulties aged 14 or over were interviewedregarding family circumstances, service supports and levelsof stress. In general, families were living in circumstancesof material disadvantage and reported a high need for services,due to a lack of informal support and the considerable supportneeds of many of the people with learning difficulties. Carerawareness and receipt of specialist intellectual disabilityservices were, however, low. A lack of information and staffwith appropriate language skills, coupled with a general neglectof the cultural and religious needs of service users and carers,appeared to result in low service uptake and low levels of satisfactionwith services. Eight per cent of carers reported levels of stressindicative of psychiatric problems, and also reported high levelsof contact with health services. There was some evidence thatservices were not allocated according to need; carers with lowhousehold incomes reported higher levels of stress, but carerswith higher household incomes received a wider range of services.The implications of these findings for services are discussed.     

Responding to child sexual abuse: an evaluation of social work by children and their carers

This paper presents the views and perceptions of 35 children and their current carers regarding the social work response to child sexual abuse. Interviews with the children and carers, including foster carers and residential carers, were carried out 2–4 years following disclosure, thus the nature of social work support in the longer term, as well as the initial response, is assessed and described. Three evaluations of social work support are presented: the child-ren's evaluations of social workers known since disclosure, and two evaluations from the carers, one focusing on the child's needs, and one focusing on their own as carers. All three evaluations perceived the majority of social workers as having helped. Aspects of social work considered essential included providing emotional support and reassurance, providing information and explanation and arrang-ing and coordinating services, including counselling or therapy.
  Carers of children who were abused by someone outside the family were less likely to receive social work support. The frustra-tion and disappointment expressed by some of these carers reaffirms the importance of assessing needs even when the child is considered protected from further abuse. The findings of this study support the need to refocus responses to abused children and their families.     

Combining Work and Care: Carers' Decision-making in the Context of Competing Policy Pressures

Issues related to paid work and care are of global importance, reflecting the twin pressures of population ageing and efforts to increase labour market participation. Informal carers of sick, disabled or older people can experience tensions between policies aimed at support for care and support for employment. This article discusses a study of carers’ decision‐making around work and care, drawing on evidence from interviews with 80 working‐age carers in England. Carers are not homogeneous; their circumstances and needs differ reflecting age, gender, ethnicity, labour market participation, and the condition and/or needs of the person they support. This diversity is illustrated by contrasting rural and urban carers’ decisions and experiences about work and care. Key factors that impact on carers’ decisions are: current and anticipated financial need; the constraints arising from receipt of carers’ and other means‐tested income maintenance benefits; personal identity; job opportunities and scope for flexibility; social services provision; carers’ own health. Distance, travel times and transport are unique additional challenges for rural carers who (wish to) work. These difficulties are further intensified when they intersect with other factors such as the Carer's Allowance, the local labour market and social services provision. The findings are evaluated in terms of the adequacy of current government policy measures.     

Bridging the divide: elders and the assessment process

Summary At the heart of needs-based assessment is an uneasy tensionbetween agency-centred and user-centred objectives. Using casematerial from an ethnographic study of the process of assessmentfor older people, this paper looks at what happens when practitionerstry to understand the needs of individual elders through a processdominated by agency agendas. By marginalizing the older person'sinsights, the risk of unwelcome or inappropriate interventionmay increase. A user-centred approach, by contrast, requiresinformation gathering and provision that is meaningful to theolder person and sensitive to their efforts to analyse and managetheir situation. These efforts are often revealed in narrativeform as the person tells their story which, in an agency-centredassessment, is easily overlooked or even ignored.     

The Limits of Support in Foster Care

Correspondence to Stephen Nixon, School of Continuing Studies, The University of Birmingham, Edgbaston, Birmingham B15 2TT; E-mail: Continuing-Studies{at}bham.ac.uk Summary This study was designed to explore the support provided forfoster carers during crises. A sample of sixty-seven fostercarers who had experienced an allegation of abuse against amember of their immediate family were questioned, with a specificfocus on their support needs and experiences during the periodof investigation and its aftermath. Data were also gatheredfrom a smaller sample of twenty family placement social workerswho worked with a sub-sample of these foster carers in orderto establish their perceptions of the issues. Shock, anger,bitterness and a sense of isolation were the prevailing emotionsexperienced by foster carers. It was found that the formal supportoffered by the child-care agencies was not used by 76 per centof foster carers. For most carers there was a lack of congruencebetween the type of support they needed and the support providedby the child-care agency. A number of other useful findingsemerged which are discussed in relation to crises in fostercare. The implications for foster care practice are substantial andrelate to the optimum provision of support for foster carersin such crises. It is suggested that the key role of socialworkers is to encourage and enable foster carers to establishtheir own close network of personal support in anticipationof such events.     

Grounding Constructions of Carers: Exploring the Experiences of Carers through a Grounded Approach

Social and political constructions of carers have been criticizedfor undervaluing the complexities of the experiences of carers.However, relatively little research has attempted to generatemore meaningful constructions of carers by drawing these considerationstogether. The purpose of this article is to begin addressingthis need. To accomplish this, the article is presented in twosections. First, an overview is provided on the current constructionsof carers and suggested considerations for research. Second,with this overview as its context, a study, taken from the author’sacademic dissertation, is presented. The study sets out to generatemore meaningful constructions of the caring experience througha grounded approach. The findings are based on a focus groupand interviews with fourteen carers in total. A diverse rangeof participants were involved, in order to generate categoriesthat would hold more relevance across caring experiences. Fourcommon categories for carers emerged, along with propertiesthat explained differences in experiences. The categories ofwhen carers start to care, circumstances change over time, justifyingthe use of support and using support are subsequently discussedin relation to current constructions, practice and policy.     

Enabling Adults with Learning Disabilities to Articulate their Housing Needs

Correspondence to Dr Alex McGlaughlin, Department of Social Sciences, The Nottingham Trent University, Burton Street, Nottingham NG1 4BU, UK. E-mail: alex.mcglaughlin{at} ntu.ac.uk Summary This study is about involving adults with learning disabilitiesin service planning by asking them to articulate their own needsin relation to housing. It also identifies some of the barriersto meeting the housing needs of this group. The views expressedindicate that ordinary housing with small numbers is the preference,and that appropriate support is highly valued. This suggestsa need for housing of a supported living model or similar. Theservice users in this study were clearly able to verbalize theirpreferences as well as to think through potential options. However,there is also clear evidence that they feel powerless in makingchoices, with decisions being taken on their behalf by professionalsand carers. This demonstrates the need for a cultural shiftwhereby the voices of adults with learning disabilities areheard and acted upon.     

Quality Assurance, Pre-Sentence Reports and the Probation Service

Correspondence to Dr Peter Raynor, Applied Social Studies, University of Wales, Swansea, Wales SA2 8PP. Summary During the months immediately preceding the implementation ofthe 1991 Criminal Justice Act the Home Office commissioned astudy of quality assurance and quality control procedures usedby probation services in their work on social inquiry reportsand in their preparation for the change to pre-sentence reports.This paper summarizes the results of that study, which includeda survey of current practice in probation services and the developmentof a quality control instrument for assessing the quality ofpre-sentence reports. It is emphasized that the views expressedin this paper are those of the authors and not necessarily thoseof the Home Office.     

Children in Need and their Families: Outcomes of Referral to Social Services

Jane Gibbons. Social Work Development Unit. University of East Anglia. Norwich NR4 7TJ. Summary The Children Act provides a clear remit to local authoritiesfor the provision of services to children in need and theirfamilies. Increased service provision needs to be supportedby evaluation of effectiveness. The paper describes an attemptto develop instruments for this purpose. In a sample of 122families containing children under 14 who were referred to socialservices departments, indicators of family needs, services receivedand their outcomes were used to examine whether services werematched to needs; and whether they had any effect on familyproblems in the short term.     

Visitors' Views on Residental Homes

Correspondence should be addressed to Justine Schneider, Senior Lecturer, Centre for Applied Social Studies, University of Durham, 15 Old Elvet, Durham DH1 3HL, UK. Email: Justine.Schneider{at}durham.ac.uk Summary Relatives and other people who visit residential care homeshave an opportunity to formulate their own views about the qualityof care, often over a considerable period of time. They maybe experienced in providing care themselves, and many have beenthe principal carer before admission of the resident. They canbe decision makers in purchasing care, and their preferenceswill therefore influence the market. Finally, through theirfrequent attendance, they too form part of the environment ofa home. This paper reports the findings of a survey of 228 visitorsto 17 residential care homes throughout England. It shows whothe visitors were, what they did, their likes, dislikes andideas for improvements. It summarizes what aspects were mostimportant to visitors, many of whom were former carers; thishas implications for purchasers and providers of residentialcare. It closes with a methodological discussion about how thevaluable views of visitors may be tapped without encounteringreticence due to guilt or fear of retribution affecting theresident.