Outcomes Important to People With Intellectual Disabilities

Outcomes Important to People WithIntellectual DisabilitiesEmma Miller*, Sally-Ann Cooper†, Ailsa Cook‡, and Alison Petch§

*Independent Consultant, Edinburgh; †Department of Psychological Medicine, University of Glasgow, Glasgow; ‡Media andCommunications, Queen Margaret University, Edinburgh; and §Research in Practice for Families, University of Edinburgh,Edinburgh, UK

Abstract An emphasis on the outcomes of health and social care services has become increasingly apparent within public policy in theUnited Kingdom. Alongside this, working in partnership has been a key theme, despite a relatively underdeveloped evidence base. Ofcentral importance, however, must be whether directives toward partnership working are delivering improved outcomes, and inparticular, the outcomes that are valued by service users. The authors describe a project that sought to identify the outcomesimportant to people with intellectual disabilities, and where possible, whether partnerships delivered these outcomes. The researchwas primarily based on interviews with service users and carers, and involved people with intellectual disabilities as both researchersand research subjects. The project categorized key outcomes in two categories (quality of life and process) and identified ways inwhich health and social care partnerships can deliver the outcomes service users want. If agencies are to deliver good outcomes tousers, as increasingly emphasized in policy, this focus should accurately reflect the outcomes that users themselves define asimportant.

Keywords: intellectual disabilities, partnerships, quality of life, service user involvement, user-defined outcomes

INTRODUCTION

People with intellectual disabilities experience health andsocial inequalities compared with the general population(Horwicz, Kerker, Owens, & Zigler, 2001; NHS Health Scotland,2004; Scheepers et al., 2005). Across most of the developed world,there has been a shift in policy focus toward closure of long-stayhospitals, improving access to services, and training to reduce theinequalities that people with intellectual disabilities experience(Australian Health Minister, 1998; Department of Health, 2001a;Scottish Executive, 2000; Swedish National Committee for PublicHealth, 2000; U.S. Office of the Surgeon General, 2002; WelshAssembly, 2002).

Within the United Kingdom, health-related policies haveincreasingly placed an emphasis on the outcomes of health andsocial care services (Department of Health, 2006; Departmentof Health/Government Strategy Unit, 2005; Scottish Executive,2004). The concept of outcomes has been subject to much dis-cussion, with various outcome typologies identified (Petch,Cook, & Miller, 2005). Underlying these approaches is a shared

assumption that outcomes refer to impacts on users of services,with increasing emphasis on the importance of identifyingoutcomes “derived from what people have told us they want”(Department of Health/Government Strategy Unit, 2005).Quality of life is a core concept underpinning service delivery forpeople with intellectual disabilities, while at the same time pre-senting problems of definition, measurement, and implementa-tion (Schalock & Alonso, 2002).

Alongside the increased emphasis on outcomes, the process ofworking in partnership has been a key policy theme, despite arelatively underdeveloped evidence base. Divisions betweenhealth and social care services are familiar in Western countries,resulting in boundary disputes and lack of coordination.However, the different sources and methods of financing of thetwo sectors in the UK in particular have had critical implicationsin sustaining divisions between them (Lewis, 2001). Divisionsbetween health and social care have been identified as causinginequality and hardship for service users with intellectual dis-abilities and their unpaid carers (McGrother, Hauck, Bhaumik,Thorp, & Taub, 1996). The importance of both partnershipworking and of placing service users at the core has been reiter-ated in a recent English White Paper (Department of Health,2006). This document highlights the need for local authorities(responsible for the organization and delivery of social care) andNational Health Service organizations (responsible for healthcare) to operate with shared agendas and develop strong workingrelationships if they are to deliver the government’s vision ofmaximizing choice for service users, as well as providing more

Received April 30, 2007; accepted November 25, 2007Correspondence: Emma Miller, University of Edinburgh, Health in SocialScience Medical Quadrangle, Teviot Place, Edinburgh EH8 9AG, Scotland.Tel: +44 141 632 0200; Fax: +44 141 552 7857;E-mail: [email protected]

Journal of Policy and Practice in Intellectual DisabilitiesVolume 5 Number 3 pp 150–158 September 2008

© 2008 International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, Inc.

mailto:[email protected]

individualized packages of care and support.1 Of central impor-tance, however, must be whether the directives toward partner-ship working are delivering improved outcomes, and in particularthe outcomes that are valued by service users. As we have argued(Petch et al., 2005), few of the key policy documents in this areaare explicit as to intended outcomes.

AIMS OF THE STUDY

There were three key aims of this research: first, to identifythe outcomes important to service users, second, to determinewhether services delivered in partnership between health andsocial care deliver the outcomes that service users want, and third,to identify features of services that supported good outcomes forusers. The initial phase of the project sought to build on previouswork on outcomes by the Social Policy Research Unit (SPRU) atYork University, and to develop an outcomes-focused tool as abasis for interviewing service users. Although it was not our aimto argue that only partnerships could deliver the desired out-comes, the extent to which partnership features could be associ-ated with specific outcomes was a concern. Detail on this aspect ofthe project is available elsewhere (Petch et al., 2007).

The project included service users and a small number ofcarers from three distinct service user groups: people with intel-lectual disabilities, users of services for older people, and users ofmental health services. We will concentrate in this paper on thework undertaken with the first group, but will include referencesto similarities and differences from the two other groups ofservice users. The key focus of this paper is to report on the firstaim of the project—identifying the outcomes important topeople with intellectual disabilities.

METHODS AND APPROACH

Service-User Involvement

This project involved researchers from the University ofGlasgow working with service user researchers to developresearch tools and conduct interviews with service users. Userresearchers were not involved in shaping the research questions,but were variously involved in all stages of the research processsubsequent to funding being allocated. Researchers from theintellectual disabilities advocacy organization Central EnglandPeople First (CEPF) were very influential in shaping the originalinterview schedule and ensuring that our materials for workingwith people with intellectual disabilities were jargon-free andaccessible. User involvement in the definition and measurementof outcomes is emphasized in policy (Department of Health,2001b; Scottish Executive, 2001), and six CEPF researchers played

a key role in identifying outcomes in the early stages. In the nextstage of the project, CEPF researchers also conducted interviewsin four sites for people with intellectual disabilities. Service userswith and without intellectual disabilities provided advice duringthe development of the project and were involved as participantsin our reference network, which consisted of individuals withexpertise in various fields relating to the project, and which wasconsulted at regular intervals.

This collaboration was not without tensions, particularlyrelating to differing expectations and agendas associated with theemancipatory approach of the self-advocacy organization and thepolicy-oriented goals of the university researchers. However, fromthe perspective of the academic researchers, the collaborationsundoubtedly enhanced the research in many respects, particularlyin ensuring the relevance and appropriateness of our interviewschedule and in monitoring and advising on our generalapproach (Miller et al., 2006). Although all three user researchorganizations were paid for their involvement, the researchersfrom CEPF were not remunerated individually for their input,with funding being absorbed by the organization. This wasascribed to the benefits system in the United Kingdom, whichpresents a major barrier to individuals with disabilities beingdirectly paid for such work.

Initial Stage: Literature Review

This research was primarily based on qualitative semistruc-tured interviews with service users and carers. Prior to conduct-ing the interviews, considerable time was invested in developingthe interview schedule based on the outcomes important toservice users. The first step undertaken by the university research-ers was to review the literature on user-defined outcomes. Wesought to identify previous work involving service users in iden-tifying what mattered most to them in using services. Work doneby the SPRU at York University emerged as particularly relevantbecause of the extensive consultation with users themselves(Qureshi, 2001) and the emphasis on the promotion of evalua-tion based on these outcomes (Nicholas, Qureshi, & Bamford,2003). Three types of outcomes had been identified by SPRU—maintenance (support to quality of life), process (how servicesare delivered by staff), and change (making things better). To testthe salience of this work, we conducted focus groups basedaround the SPRU outcomes.

Focus Group

Two potential limitations of the SPRU outcomes for use as abasis for this research were, first, that they had been derivedprimarily through consultation with older service users, andsecond, they were focused on social care as opposed to thebroader range of services delivered by the health and social carepartnerships that were being evaluated in this study. We thereforeconsidered it was important to test the validity of this conceptualframework for evaluating the experiences of service users acrossthe three user groups and for those using a broader range ofservices. We organized focus groups with each service user group,followed by development of a draft interview schedule, and thenpiloting of the schedule in Scotland.

1We should note that eligibility criteria for accessing services were tighteningduring the period of this research. Currently, under Fair Access to Care Ser-vices, most areas in England are restricting social care provision to peopleassessed as having at least substantial needs (CSCI, 2006). This was explicitlyraised as a concern by staff in two areas where we interviewed, who com-mented that some current users would no longer be entitled to services.

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The focus group with adults with intellectual disabilities wasfacilitated by our user research partners, CEPF. They recruitedeight members of their local branch to participate. Prior to thefocus group, CEPF developed a series of questions about out-comes using accessible language. The questions were fairly broadto allow a range of concerns to emerge based around discussion of“What is important to you in life?” “What is the role of services?”and “What do good services look like?” The researchers con-ducted the focus group over 2 days, including 1 day to verify thefindings with participants. In order to ensure that all focus groupmembers were enabled to participate, the CEPF researchers askedindividuals to respond in turn rather than facilitating morefree-flowing discussion. While this meant that spontaneity waslimited, all participants were given opportunities to contribute tothe discussion, including individuals with communication diffi-culties, thus overcoming some of the limitations relating to theinclusiveness of group interviews (Fraser & Fraser, 2001).

In relation to general findings on outcomes, the focus groupsbroadly confirmed the salience of the SPRU outcomes and alsohighlighted that some were more central than others to the con-cerns of all service users than others. Taking the findings from thefocus groups into consideration, we modified the outcomesaccordingly using terms identified as relevant by CEPF (Table 1)(see Petch et al., 2007).

The Interview Schedule

Having tested out and modified the outcomes framework, thenext stage of our research involved developing this into an inter-view tool, in close consultation with our user research partnersand the reference network. We had originally considered the pos-sibility of three separate schedules, but found that differencesbetween user groups were more around the emphases placed onoutcomes rather than significant differences in the outcomesthemselves.

The interview schedule was divided into four sections: thehelp you get (questions about service inputs), how using theservice impacts on you and your life (quality of life and changeoutcomes), what happens when you use the service (process out-comes), and finally, your thoughts on the service overall. A finalquestion was added to allow those who understood that the

service was provided in partnership to reflect on any differencethat made. The interview schedule can be accessed online (Petchet al., 2007).

Second Stage: The Interviews

Having tested out the outcomes important to service usersand translated these into an interview schedule, the next stage wasto use this to identify whether partnerships were delivering out-comes to users. Interviews were conducted across five partner-ships supporting people with intellectual disabilities (referencedin this paper as Services One through Five), one in Scotland andfour in England.2 While a range of service types were included asresearch sites, the services were selected on the basis that healthand social care staff were working together to deliver an inte-grated service at the operational level. Table 2 describes the typeof the service and the number of participating users/carers fromeach.

In each partnership, we spoke to members of the staff aboutkey features of their services, including the extent to which healthand social services were integrated and about key policy influ-ences on the services. During some of these interviews, the staffalso raised concerns about resources, including staff shortages ordifficulties with recruitment. Although we did record this infor-mation, our primary data source was service users, with informa-tion from staff treated as supplementary.

Where interviewees had difficulties responding to a series ofquestions, interviews tended to consist of a general discussionwhere as much information as possible was obtained about theirquality of life and the role of services. In some cases (nineteeninterviews), individuals were interviewed with a carer (paid orunpaid) and information obtained from the service user wassupplemented by responses from the carer. So as not to excludepeople with more profound intellectual disabilities altogether, weinterviewed carers as proxies on 12 occasions. There were a totalof 48 female and 39 male service users included in our research.

2The partnerships included in this research were all well established, and hada history of joint working prior to formal structural integration. This issignificant because they tended not to experience many of the teething prob-lems and conflicts associated with the health and social care divide in theUnited Kingdom.

TABLE 1Outcomes forming the basis of the final interview schedule

Quality of life Process Change

Safety Being listened to Reducing symptomsHaving things to do Valued and treated with respect Improving mobilitySocial contact Having choice/having a say Restoring skills and confidenceStaying as well as you can be ReliabilityLiving where you want ResponsivenessLiving life as you want



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More than half of the interviews were conducted in the homes ofservice users: living independently in the community, or withfamily, or in supported living, with the remainder conductedwithin service premises. Most interviews lasted between 30 and90 minutes.

For each interview, consent was sought at the outset from theservice user or carer to ensure that the individual understood thepurpose of the interview, that the information would be treatedconfidentially, and that the interview would have no direct impacton their services. Consent was also sought to record the inter-views, and when it was refused in a minority of cases, handwrittennotes were taken. Once interviews with users and carers werecompleted, the recorded material was transcribed and codedusing the qualitative analysis package Nvivo. The coding framestarted with the initial outcomes and expanded to include issuesraised by interviewees and features of services identified as sig-nificant in relation to outcomes. This way, we were able to identifypatterns that emerged in outcomes delivered in each service andfeatures that supported or hindered outcome delivery.

RESULTS

We coded the data from 87 interviews across five services.While some outcomes were relevant to all three groups of serviceusers included in the research, we identified where issues wereparticularly important to people with intellectual disabilities. Amore detailed account of the differences between groups is avail-able (Petch et al., 2007). We also occasionally highlighted wherethe emphasis of carers differed from users. In the followingmatter, we will discuss quality of life outcomes first, followed byprocess outcomes. As it is not possible to discuss all the outcomesat length, particular attention will be paid to those that emergedas most important to people with intellectual disabilities.

Outcomes: Quality of Life

Quality of life outcomes were important to people with intel-lectual disabilities, with most emphasis placed on activity andsocial contact.

Having things to do In all five services for people with intellec-tual disabilities, interviewees emphasized the importance ofmeaningful activity. Many service users talked in detail about thestructure of their week, describing a range of activities. Effortswere being made by services to extend the range and choice ofactivities offered to people. Some areas had moved away com-pletely from traditional day-center provision, while others were intransition to provision of external activities. The link betweenactivity and physical and mental health was emphasized by inter-viewees across services, particularly in Service Three. One man inrural Scotland noted, “I do a lot of sports, like football, golf, horse-riding . . . So I’m enjoying all those sports and activities what I do,so it gives me, keeps me healthy.” A woman in rural Scotland toldus “We can go to things at night rather than be stuck at homeand feeling depressed.”

Employment had been emphasized as important in the focusgroup held by CEPF, and was also raised by interviewees in eacharea. At least one or two service users in each site expressed a wishfor “proper” paid employment. One service user who emphasizedlack of employment as his key concern said that this is having animpact on his health. He described feeling depressed as a resultand linked this with occasional bouts of drinking. Service Twoappeared to offer more employment opportunities for peoplewith intellectual disabilities than other areas due to strong linkswith local employers and an employment agency for people withdisabilities. Although paid employment was emphasized by some,others described participation in workshops run by ancillary ser-vices and projects as their job, or spoke very positively of volun-tary activity and hobbies as key activities. For some service users,the most valued activities were opportunities to learn life skillswith a view to increased independence, as noted by one woman inan urban area in the north of England: “I want help with mymoney, someone help with my money and crossing the road safely.”Another woman from a rural area in the north of England said“I’d like to do computing or filing . . . Education things that I’mdoing which I’ll get certificates for.”

Seeing people Opportunities to spend time with other peopleand socialize were emphasized as important by almost all inter-viewees. Many interviewees talked about the importance ofcontact with family. Some unpaid carers who reported thatservice users were reliant on them for social contact would have

TABLE 2Participating services and the number of participants

Type of service Geographical locationNumber ofinterviews

Number of interviewsby CEPF

1: “LD” (intellectual disabilities) team Urban north of England 17 132: Day services Urban south of England 13 83: “LD” (intellectual disabilities) team Rural Scotland 20 04: Day services Rural north of England 20 55: Supported living Urban south of England 17 9Total 87 35

CEPF, Central England People First; LD, learning disabilities.



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welcomed more provision of social activities from services,particularly in the evenings. Social contact was in some casesrestricted by geographical location, particularly in rural areas,where public transport was limited. However, nobody reportedbeing socially isolated.

Most detailed comments around seeing people were related toservices, with users speaking positively about seeing both staffand peers. Everybody we spoke to had contact with other serviceusers in either day services and/or in shared accommodation. Inall five sites, the opportunity to form romantic attachments withother people with intellectual disabilities through services wasvalued. This will be discussed further in the section on living lifeas you want.

Many service users emphasized contact with staff as beingmost important. It was not unusual for service users to refer tostaff as key friends. The role of staff in meeting service users’emotional needs was mentioned frequently. Apart from relation-ships with family, other service users, and staff, it was unusual forindividuals to describe other friendships, particularly with non-disabled people in their community. This was the case even wherethe use of community-based services was evident, such as inService One, where many users were attending the local college.One informant, a man in the urban south of England, noted, “Ilike associating with people. I like, eh . . . talking to people and that,getting involved with . . . like, social services and that. I get involvedwith them alright, talking and that and having a laugh and that, theladies who take me out.” At least one or two interviewees in eachsite related social contact to well-being (this excerpt came from awoman from the urban south of England):

I: Do you ever feel lonely?R: Em, [long pause] I do cry . . . But people know when

I’m going to . . . when it’s coming. I have horriblethoughts, you know, suffer from anxiety. I have to have mymedication to try and stop me, but that’s where comfortcomes in. I get comfort.

Another service user described significant improvements inher social skills and quality of life through support from theteam in Service Three. She explained that she had previouslybottled up her feelings and that she had “liked nobody,” butsupport from staff had meant she now had a network of peoplein her life.

Related to social contact with staff, two issues were raised asbarriers to good outcomes from services. The first issue wascontinuity of relationships with staff. Both users and carersidentified changes in staff as disruptive. In Service Four in par-ticular, where service managers acknowledged difficulties withstaff retention, several carers commented on the impact of highstaff turnover. One commented that when there was relativestability in staffing, her son’s confidence improved. “I do thinkshe needs continuity because if everything starts to alter and gohaywire that makes her agitated you see, so continuity is a greatthing I think,” noted one unpaid carer from the rural north ofEngland.

The second related issue was staff shortages. In two areaswhere staffing problems were identified, interviewees describedconflicts and jealousy between users. This excerpt was taken froma woman living in an urban area in the south of England:

R: My key worker will come here and talk, if I want to or theothers . . . if they’ve got five minutes.

I: Okay, so that’s good.R: Yeah. And I think that’s where the jealousy comes in (pre-

viously described jealousy from other users in the service).

Safety There were two types of response to the question ofsafety. The first related to concerns about physical safety in thehome, in the neighborhood, or in services. Issues relevant tosafety in the home included fear of falling and concerns about firerisks. Individuals gave examples of where services had intervenedwith pragmatic responses to such concerns. One or two individu-als in each of the urban areas of our sample described incidents ofcrime or bullying by other people in their communities, whichhad made them feel unsafe. A male interviewee in Service Twoexplained that he had felt unsafe at home for many months aftera brick had been thrown through his window. Safety within ser-vices was a concern of carers of individuals with more profoundintellectual disabilities. Carers described their need to know thatthe physical safety of their son or daughter would be attended toand that there would be no exposure to risk of harm. Reflectingrather modest expectations, one mother said that as long as sheknew that her daughter was physically safe, “anything else was abonus.”

Many users who commented on what made them feel safehighlighted the importance of social contact. Such responses wereoften expressed as a need for emotional support when required.Reflecting the importance placed on social contact with staff,users talked about the role of the service in relation to feeling safe.In Service Three, several interviewees specifically mentionedcontact with staff as significant in relation to feeling safe, with twocomments also highlighting responsiveness as important. Anexample is this excerpt from a woman in rural Scotland:

Q: Do you think having the services makes a difference to youin that way?

A: Yes.Q: Can you tell me a bit about that?A: It’s helped me to get over my stress . . . Somebody to turn to

when I go high. I’ve got a phone number down if I get anyproblems.

Where you live/living life as you want Service users were askedboth about whether they were happy with where they lived andwhether they were living life as they wanted to. Most peoplereported being at least reasonably happy where they were living,although some had experienced difficult relationships with rela-tives or with other residents in group accommodation. Inter-viewees described living in a variety of settings. For those insupported independent living, mainly following discharge fromhospital, there were dramatic differences in lifestyle, and thesesituations were particularly highly valued. CEPF researchers wereparticularly impressed that in Service Five, all the supportedliving houses that they visited were in pleasant and safe areas andusually had gardens. Many interviewees in supported indepen-dent living spoke about the impact of feeling in control over theirlives. One paid carer from the urban south in England describedthe effect on an individual with limited communication skills of



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living in a stable and settled situation: “. . . he was moved around afew times to different places and it must be so unnerving . . . he wasso unsettled and he was really frightened looking and wouldn’t sleepat nights or anything like that and now he’s been here for a couple ofyears he’s got used to, he’s more settled. I think it’s the longest timehe’s stayed in a place.”

Although there were limited opportunities for independentliving in Service Four, several interviewees appreciated opportu-nities to build their skills for independence in the day servicesthere. Three individuals said that they wished to continue livingin the family home. Other individuals with more complicatedneeds were living in the family home. We were reliant on familycarers for information in these circumstances, and it was notalways clear that families and services had discussed options forsupported independent living. This excerpt, taken from our inter-view with a man from the rural north of England, shows this:

R: . . . if I did have a choice I would leave home . . . I’d like toleave because I’ve been there too long now.

I: Has anyone asked you if you wanted to do that as yet?R: Not yet, they haven’t. No.

As well as discussing where they lived, many intervieweestalked about the importance of who they lived with as having animpact on their quality of life. In each area, there was at least onecouple who had met through services. One interviewee usingService Five had recently married another user and they had theirwedding reception at the center. In this way, services were facili-tating the aspirations of people with intellectual disabilities to“have a normal life.” However, although a small number of serviceusers discussed their aspirations to get married and have children,none had children living with them. Three who were parentstalked about their children being brought up in care or by otherrelatives.

Health and well-being It was notable that when people talkedabout health, most identified the role of their services in support-ing their health needs and that they spoke in holistic terms abouthow they were supported to stay healthy. Users and carers acrossthe five sites made connections between healthy eating and/orphysical activity and good health, reflecting the use of healthyliving plans or health passports in some services. Although con-tinuing concerns exist about the failure of services in the UnitedKingdom to meet the health needs of people with intellectualdisabilities, there were positive examples identified by users wherestaff from partnership services assisted communication and actedas advocates with medical staff outside of the partnership. Oneman from Scotland noted,“S takes me to the asthma clinics, Dr G’s,and she takes me to Dr M here. If I don’t understand what they’resaying, she’ll translate . . . so that I understand what they’re saying.”

Around half of the service users we spoke to experiencedhealth problems of various kinds. In most cases, interventionsfrom partnerships to address these problems were viewedpositively. There were limited references to untreated healthproblems, and these were usually related to staffing issues. Inparticular, shortages of physiotherapists and speech therapistswere identified in two areas. In every area where unpaid carerswere interviewed, at least one carer expressed doubts about the

ability of staff to monitor and manage the day-to-day healthcare of their son/daughter as well as they could, even wherethe carer was broadly satisfied with the care received by theirson/daughter.

Outcomes: How Service Users Were Treated in the Service

This section will focus on process outcomes or how individu-als are treated by services. We found less data on user views onprocess outcomes than on quality of life outcomes. This was truefor all three of the user groups, but the difference was morepronounced for people with intellectual disabilities. Althoughparticipants in the CEPF focus group had given many examples ofhow they were treated by services, relevant questions elicited one-word answers from many of the interviewees. This may bebecause of the more abstract nature of the process outcomes incomparison with quality of life outcomes. It may also be thatbecause CEPF is an advocacy organization, their members weremore used to speaking out about their experiences.

Valued and treated with respect Being valued and treated withrespect involves conveying a belief that someone has a legitimateright to services, that they are a valued person despite their diffi-culties or symptoms, and that their confidentiality and privacywill be maintained. For some individuals, the specialist servicesprovided by partnerships were viewed as treating them in a non-discriminatory fashion. A man living in the rural north ofEngland said, “I think it’s really good. Because, just because we’vegot learning disabilities doesn’t mean that we should be you know,taught differently, like a child or anything like that, you know.”

Being listened to Being listened to was important to many inter-viewees. This relates to the emphasis placed on relationships withstaff, with an emphasis on one-to-one time as important. Anunpaid carer using Service Three emphasized that listening initself played a valuable role, even if practical solutions to prob-lems could not be identified. The following quote from an unpaidcarer illustrates an example where staff made extra efforts toovercome communication difficulties: “They have a picture boardwhere they can point, either do you want to go out or do you want togo here, do this, that or the other. And he can point to which hewants.”

From users of Service Two, there were several commentsabout not being listened to, with half of the interviewees indicat-ing this was an issue for them, including the previous examplerelating to jealousy between users. Even where people felt theywere generally well treated by the service, being listened to was aconcern highlighted by many. This was related to staff shortagesin day care.

Choice For people with intellectual disabilities, choice was par-ticularly highly valued. During the focus group facilitated byCEPF, some individuals identified that they had had very littlecontrol over their lives in residential care, and therefore placedhigh value on choice and having a say. In interviews, opportuni-ties to try different activities were mentioned frequently. Therewere also examples of individuals valuing the space not to par-ticipate from time to time and to have a day at home instead.



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Choice and control were also frequently mentioned when peoplewere asked about where they live and whether they lived theirlives as they wanted.

Reflecting partnership between services and users, one of theinterviewees (a man from the urban south of England) usingService Two referred to the users’ parliament as a forum that givesusers a say and impacts on services: “The Parliament—you decidewhat’s good and what’s not good and then you tell the differentresource centres and all the places.”

Reliability Reliability was not discussed as much as some otherprocess outcomes by people with intellectual disabilities. Themajority of responses to the question on reliability were positive,though individuals generally did not give examples. For thosewho viewed services as less than fully reliable, most commentsrelated to turning up, or turning up on time. Again, where a lackof reliability was identified, this was sometimes related to staffshortages.

Responsiveness Interviewees were not specifically asked aboutservice responsiveness. However, this was something that wasrepeatedly raised as a valued aspect of services. This also relates topartnership working, as some references to service responsivenesswere about easier access, for example, through being able tocontact various staff through one telephone number. Responsive-ness was more often referred to by carers. This may explain why itwas raised in all areas by users except Service Five, where unpaidcarers were not interviewed. Responsiveness is understood here asknowing services will respond if required. Witness this exchangewith an unpaid carer in rural Scotland:

I: And what would you say is best about the service?R: Well I would just say . . . any problem, I could just phone E.

DISCUSSION

Through the variety of processes described in our methodssection, we worked with user researchers to identify key qualityof life outcomes important to people with intellectual disabili-ties. It was evident from data gathered in subsequent interviewswith users of health and social care services, supplemented withinformation from carers and staff, that changes in service deliv-ery, emanating from a variety of policy directives, were influenc-ing outcomes for service users with intellectual disabilities. Infour of five services, staff cited their main national policy docu-ment as influences. Both Valuing People (Department of Health,2001a) in England and The Same as You (Scottish Executive,2000) in Scotland stress the need for partnership working.Another change referenced by staff and exemplified by storiesfrom users was deinstitutionalization. Research literature on theeffects of the latter policy in the United Kingdom has shown thatsmaller community-based homes can be associated with someof the outcomes identified in this research, such as increasedcontact with staff, more activities, and more choice (Emerson &Hatton, 1996). We found that the extent to which partnershipworking played a role in supporting independent living variedaccording to the type of service and availability of resources ineach area. However, even where individuals had not been offered

opportunities for independent living, they still valued opportu-nities to learn skills and to prepare for living independently at alater date.

Against the context of various changes taking place in ser-vices for people with intellectual disabilities, establishing causal-ity in relationship to partnership working presents challenges.However, it was evident that both health and social care out-comes were being delivered by partnerships, including keyquality of life outcomes identified as important by people withintellectual disabilities. Service users with intellectual disabilitiesplaced most emphasis in interviews on quality of life outcomes,particularly activity and social contact. With regard to activity,users enjoyed describing the structure of their week, oftenemphasizing variety in their schedule as important. Some indi-viduals emphasized that employment was particularly impor-tant to them. However, employment opportunities for thispopulation remain undeveloped (Social Care Institute for Excel-lence, 2007), and individuals who placed particular value on thisoutcome expressed frustration and disappointment at the lackof opportunities. Although participants in this research tendednot to discuss their financial circumstances, consistent withother research in the area (Abbott & McConkey, 2006), substan-tial evidence exists around benefits being a major barrier topeople with intellectual disabilities getting a job (SCIE, 2007).Indeed, our user researcher partners at CEPF were not paidindividually for their considerable input to the project for thisreason. Other participants in this research were enthusiasticabout participation in projects and voluntary activity in theircommunities. In each partnership, opportunities for activitieswere supported by extended partnership working, and particu-larly, links to the voluntary sector. Wider partnership workinghas been identified elsewhere as important to create positivenew opportunities for people with intellectual disabilities(MENCAP, 2000; SCIE, 2007).

Social contact was very important to almost all of the inter-viewees who described relationships with family, peers, and staff.Although people with intellectual disabilities are less likely to seefriends than the general population (SCIE, 2007), our researchshowed that partnerships were facilitating relationships withpeers and staff. Relationships with staff in particular were high-lighted as having significant impact on the well-being of many ofthe people interviewed. With regard to building links with main-stream community activities, partnerships were also working toprovide such opportunities. However, taking part in activities andusing local facilities does not necessarily lead to meaningful socialcontact with others, particularly with reference to the nondis-abled population (Ager, Myers, Kerr, Myles, & Green, 2001). Thisraises the consideration of barriers to wider social inclusionresulting in users remaining dependent on services for socialcontact. While the goal of wider social inclusion must remain apriority, opportunities for social interaction within servicesremain important to users. As well as the importance of relation-ships with peers, staff are viewed as key players in the supportnetworks of people using intellectual disabilities services, as theyare valued for providing emotional support (if required) and forlistening. Ensuring that there are adequate numbers of staff andthat they are well trained and motivated to remain in post toensure continuity is critical to delivering the outcomes importantto users.



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Despite continuing disparities between the health needs ofpeople with intellectual disabilities, as compared with the generalpopulation (Cooper, Melville, & Morrison, 2004; Kerr, 2004;SCIE, 2007) and poor health care for this population (DisabilityRights Commission, 2006; MENCAP, 2007), the good healthoutcomes identified by users in this project are consistent withresearch showing that working across boundaries delivers effec-tive mental healthcare for people with intellectual disabilities(Hall, Parkes, Samuels, & Hassiotis, 2006). Partnerships, throughcombining a social model approach to service provision, withrecognition of the particular health needs of people with intel-lectual disabilities, are well placed for health promotion. Giventhat it is well known that many people with intellectual disabili-ties are among the most sedentary members of the population(Messent, Cooke, & Long, 2000), it is significant that manyinterviewees demonstrated understanding of the relationshipsbetween activity, social contact, and mental and physical health.There were also examples of users requesting support from staffwithin partnerships to act as advocates and “translators” withmainstream healthcare staff. The availability of staff who hadtime to listen was also identified as important in relation to emo-tional well-being, with staff shortages leading to tensions betweenusers. Access to ancillary healthcare staff, where limited, was iden-tified as impacting negatively on physical health.

This study was designed to focus on the views of service usersabout the outcomes most important to them and the role ofpartnerships in delivering these outcomes. Although we did nottherefore place emphasis on the views of staff, there is scope forfurther research that takes account of both sets of perspectives. Amore systematic approach to gathering information from staffwould have been helpful in identifying different perspectives onoutcomes and the role of partnership working and other keyinfluences on practice.

User researchers played a key role in identifying outcomes anddesigning research tools for this project, and the three organiza-tions were involved variously throughout the lifespan of theproject according to their interests. However, in retrospect, itwould have been more productive to involve user researchers indiscussing the approach to the research and particularly thedetails of the role they would play prior to the application stage.

CONCLUSION

There exists a very wide range of definitions and interpreta-tions of quality of life outcomes (Schalock & Alonso, 2002), withthe content and structure of quality of life measures oftendeveloped by top-down approaches by clinicians and academics(Dempster & Donnelly, 2002). From the literature, we identifiedthe approach taken by SPRU as important in emphasizing theoutcomes important to service users themselves, and the salienceof this approach to people with intellectual disabilities was con-firmed by peer research facilitated by user researchers. As pre-dicted, based on previous research with people with intellectualdisabilities (Cummins, 1997; Schalock & Alonso, 2002), quality oflife outcomes emerged as particularly important to people withintellectual disabilities, with emphasis placed on social contactand activity.

Using an outcomes-focused tool based on this work, weidentified that changes in the way services are delivered to peoplewith intellectual disabilities have resulted in improved outcomes,including opportunities for supported independent living, wherethey exist. Partnership also delivers both health and social careoutcomes, with health benefits particularly apparent through thedelivery of improved quality of life, a better understanding bystaff of the health needs of people with intellectual disabilities,and the role performed by staff in advocating for service userswith other healthcare providers. The key barrier to delivery ofoutcomes for people with intellectual disabilities by partnershipswas staff shortages. Based on the findings from our research, wewish to emphasize that if agencies are to deliver good outcomesto users, as policy increasingly emphasizes, this focus shouldaccurately reflect the outcomes that users themselves define asimportant.

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Outcomes Important to People With Intellectual Disabilities