Embed Size (px)
Citation preview
This article was downloaded by: [Universitat Politècnica de València]On: 26 October 2014, At: 05:35Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registeredoffice: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK
Disability & SocietyPublication details, including instructions for authors andsubscription information:http://www.tandfonline.com/loi/cdso20
Choice: what, when and why? Exploringthe importance of choice to disabledpeopleParvaneh Rabiee a & Caroline Glendinning aa Social Policy Research Unit (SPRU) , University of York , York, UKPublished online: 19 Nov 2010.
To cite this article: Parvaneh Rabiee & Caroline Glendinning (2010) Choice: what, when and why?Exploring the importance of choice to disabled people, Disability & Society, 25:7, 827-839, DOI:10.1080/09687599.2010.520896
To link to this article: http://dx.doi.org/10.1080/09687599.2010.520896
PLEASE SCROLL DOWN FOR ARTICLE
Taylor & Francis makes every effort to ensure the accuracy of all the information (the“Content”) contained in the publications on our platform. However, Taylor & Francis,our agents, and our licensors make no representations or warranties whatsoever as tothe accuracy, completeness, or suitability for any purpose of the Content. Any opinionsand views expressed in this publication are the opinions and views of the authors,and are not the views of or endorsed by Taylor & Francis. The accuracy of the Contentshould not be relied upon and should be independently verified with primary sourcesof information. Taylor and Francis shall not be liable for any losses, actions, claims,proceedings, demands, costs, expenses, damages, and other liabilities whatsoeveror howsoever caused arising directly or indirectly in connection with, in relation to orarising out of the use of the Content.
This article may be used for research, teaching, and private study purposes. Anysubstantial or systematic reproduction, redistribution, reselling, loan, sub-licensing,systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions
Disability & SocietyVol. 25, No. 7, December 2010, 827–839
ISSN 0968-7599 print/ISSN 1360-0508 online© 2010 Taylor & FrancisDOI: 10.1080/09687599.2010.520896http://www.informaworld.com
Choice: what, when and why? Exploring the importance of choice to disabled people
Parvaneh Rabiee* and Caroline Glendinning
Social Policy Research Unit (SPRU), University of York, York, UKTaylor and FrancisCDSO_A_520896.sgm(Received 22 September 2009; final version received 23 March 2010)10.1080/09687599.2010.520896Disability & Society0968-7599 (print)/1360-0508 (online)Original Article2010Taylor & Francis257000000December [email protected]
Extending choice and control over public services is central to current policies inEngland. Such policies have immense potential for independence and well-being.However, it is still not clear how disabled people conceptualise choices, whatchoices are important, for which groups of people, in what areas of life and why.This paper presents findings from the first phase of a longitudinal qualitative studyof choice and control over the life-course. Semi-structured interviews were carriedout with 111 participants including disabled young people with progressiveconditions; their parents; adults and older people with fluctuating support needsand those experiencing sudden deterioration in health. The findings suggest thatwhile most people across all study groups wanted to be able to make choices in allareas of their lives, there are significant differences in the importance they attachto specific choices. The findings have implications for service reforms andidentify some policy and practice issues that need to be addressed.
Keywords: disabled people; older people; choice and control; public services;independence and well-being
Points of interest
● The choices disabled people thought were important to them and the way theyprioritised choices in different service domains varied according to age, thenature and severity of conditions, previous experiences of services, personalpreferences, future expectations and family circumstances.
● Participants felt exercising choice was only meaningful if choices were ‘real’,i.e. they included the options that met individual preferences and that people hadaccess to information to make ‘informed’ choices.
● Most participants thought their desired options were still either not available, orlimited. Many felt they did not have access to information that could enablethem to make ‘informed’ choices.
● Not all participants felt making choices about health care was always a goodthing. In general, participants with fluctuating conditions felt their repeatedexperiences with services had made them ‘expert’ patients who knew how tomake treatment choices. In contrast, those with sudden onset of disabling condi-tions were less concerned about choice in health care.
*Corresponding author. Email: [email protected]
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
828 P. Rabiee and C. Glendinning
Introduction
Extending choice and control for disabled and older people over public services iscentral to current policies in England (HM Government 2007; Department of Health2008). To this effect, government proposals published in three policy documentsduring 2005 (Cabinet Office 2005; Department of Health 2005; Department of Workand Pensions 2005) and the White Paper ‘Our Health, Our Care, Our Say’ publishedin 2006 aimed to foster a major transformation in public services in the community.
The emphasis on personalisation and nurturing greater self-directed support is nota new idea. It is occurring in a policy context shaped by demands of the disabilitymovement for increased independence and control (Barnes 1993; Campbell andOliver 1996; Priestley 1999). The emphasis on choice is further influenced by long-term demographic factors, particularly population ageing; and economic pressures tomeet increased public expectations and contain the costs of long-term care by maxi-mising value for money from public expenditure on services.
Measures to increase choice in social care include extending take-up of directpayments and Individual Budgets, rolled out as personal budgets across all Englishlocal authorities between 2008 and 2011. In addition, personal health budgets arebeing piloted in the NHS from summer 2009. The principle underlying such policiesis that the greater the choice public service users have, the more empowered theybecome and that in turn encourages better quality services and maximises welfaregains.
There is a body of literature that criticises consumerist approaches to publicservices, as they may result in inequitable outcomes (Lent and Ardent 2004; Clark,Smith, and Vidler 2005; Schwartz 2004). Nevertheless, in relation to social care andpersonal support, there are strong arguments that giving people choice leads toenhanced well-being. Choice is important in enabling disabled people to achieve theirdesired outcomes from services (Vernon and Qureshi 2000); it is central to concep-tions of independence among older people (Parry et al. 2004); and it is intrinsicallylinked to other key principles of citizenship and human rights (Glendinning 2008). AsMorris (2006) points out, by increasing opportunities for individuals to exercisechoice, they will be able to exercise control over the services and support they need tolive independently – which may in turn facilitate the exercise of choice in other areasof daily life.
However, research shows that choice is a highly problematic concept with multiplechallenges for many disabled people. ‘Choice is the outcome of a process whichinvolves assessment and judgement; that is, the evaluation of different options andmaking a decision about which option to choose. In order for these processes to takeplace and a choice to be made, there need to be two or more alternatives from whichto choose’ (Beresford and Sloper 2008, 2). Within that process, choice making isstrongly influenced by the availability of options; access to information about allpossible options; the role of past experiences and future expectations; how peoplebalance short-term and longer-term considerations and what emotional support peopleneed/get when making the decision (Beresford and Sloper 2008). Furthermore,making complex decisions can be cognitively demanding and this has implications forindividual capacity to exercise choices (Dowse 2009).
Challenges in exercising choice may particularly arise where disabled and olderpeople have multiple or on-going support needs and their preferred options are notavailable. While there is some evidence to suggest that positive developments, such
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
Disability & Society 829
as person-centred planning, have resulted in enhanced possibilities for supportingdisabled people to extend control over their lives (Robertson et al. 2005), there is aconsiderable body of knowledge showing that there is little choice or diversity ofprovision within current service options for disabled people (Morris 2004, 2005;Williams et al. 2008; Beresford 2003; Hart et al. 2007). Lack of accessible informationmakes decision making more difficult (Baxter, Glendinning, and Clarke 2008). Thefragmentation between services can further complicate choice making processes, asprofessionals may be poorly informed about services outside their remit (Grewel et al.2004).
Moreover, choice may be problematic for disabled and older people whose condi-tions are unpredictable and fluctuating, as they may face uncertain outcomes or needto make repeated choices. Given the interdependency that characterises many disabledand older people’s lives (Morris 1991; Shakespeare 2000; Lloyd 2003; Fine andGlendinning 2005), one person’s choice may have implications for other peoplearound them (Arksey and Glendinning 2007).
Despite growing recognition that disabled people have similar aspirations to non-disabled people (Burchardt 2005), it is still not clear how disabled people conceptualisechoice and whether choice is as widely desired as current policies assume. Therefore,translating new opportunities for choice into reality requires a good understanding ofwhat choices are important, for which groups of people and in what areas of their lives.Without this knowledge such policies may not live up to their potential to achievewelfare gains.
This paper reports evidence from an ongoing qualitative longitudinal study into therealities of exercising choice about support and other related services in the context ofchanging circumstances, as experienced by disabled and older people and their fami-lies. The study involves three rounds of interviews. The paper presents findings fromthe first round of interviews, conducted in 2007–08, about the priorities and impor-tance that those participating in this study attached to choice in general and to specificchoices in different areas of their lives and the reasons why particular choices wereimportant.
Research methods
Ethics approval was obtained from an NHS research ethics committee. Three groupsof people with particular characteristics, all likely to experience changes over time intheir circumstances and/or support needs were recruited to the study. They included:27 young people (aged 13 to 21) with degenerative/progressive conditions (YP), 34 oftheir parents; 30 adults and older people with fluctuating support needs (AF & OF)and 20 who had recently experienced the sudden onset of a disabling condition (AS &OS). There was considerable diversity within each of these groups of participants interms of gender, ethnicity and household composition.
Participants were recruited from user-led specialist/condition-specific voluntaryorganisations and support groups; hospitals; social services; minority ethnic commu-nity groups; an independent recruitment agency; children’s’ hospices, the FamilyFund Trust and ‘snowballing’ from other study participants. Two advisory groupsrepresenting disabled young people and adults and older people were involved in thedevelopment of the topic guides and commented on the study findings.
The study used semi-structured interviews, which is considered to be the mostappropriate method for collecting qualitative data about respondents’ perceptions,
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
830 P. Rabiee and C. Glendinning
subjective feelings and lived experiences. To facilitate involvement of young peopleand other participants with learning and/or communication impairments, simplerversions of topic guides, consent and information sheets were developed using morefocused language and/or symbols-based information. Two participants were inter-viewed through interpreters. Interviews were tape recorded and transcribed. The datawere analysed by a process of data reduction and display, conclusion drawing, andverification (Miles and Huberman 1994). The research team read a subsample of tran-scripts to identify emergent themes and then agreed a framework for analysis. Acomputer-assisted qualitative package (MAXqda2) was used to code the data. A seriesof charts were used to draw the data together and identify overarching themes andconclusions. Conclusions were verified by checking transcripts and through ongoingdiscussions within the research team.
Key findings
We asked study participants whether or not exercising choice was important to them,in what areas of their life and why. While we had detailed responses from many adults,older people and parents, responses from some disabled children and adults with moreprofound impairments were more limited. Their responses showed that they tended tohave more limited experiences of alternative options on which they could draw.
Many interviewees across all groups felt, just like healthy people, disabled peopleshould be given the opportunity to make their own choices, rather than being presentedwith a fait accompli. However, interviewees felt there was an assumption that becausesomeone is disabled he/she is unable to make choices. A few interviewees felt moredisabled by lack of choice than by being unable to do everything for themselves.
A number of participants whose health had deteriorated suddenly said they wereshocked to find out how limited their choices had become since they first becameunwell. It seemed to them that there was an expectation that by becoming disabled,people had to give up choices and adjust constantly to fit into the services. A numberof parents of disabled children said the choices they were able to make over serviceswas often no more than ‘taking or leaving’ the only option available. Many inter-viewees said having choice made them feel healthier and more independent.
While many interviewees highlighted the importance of being able to makechoices in all areas of life, the way they prioritised choices differed between differentage groups and also depended on the nature and severity of their condition, theirprevious experiences with services, and their family circumstances. The followingsections summarise the areas where having a choice was considered particularlyimportant and why.
Healthcare
Healthcare was the most common service in which adults, older people and parents ofdisabled children identified that choice was important. Choice was particularly impor-tant in relation to where to have treatments and what treatments to have.
Where to have treatments
Ideally most study participants across all groups wanted to have a good hospital closeby, but they felt having good quality health care services was more important than
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
Disability & Society 831
having a choice about the location of their healthcare. However, with regards to somehealth services, most people wanted choice over facilities that were physically acces-sible not just to them but also to other people around them. For example, a few olderinterviewees said the choice of a local respite/rehabilitation unit was important for thebenefit of other people visiting them.
The choice of having healthcare delivered at home was important to a number ofinterviewees, although for different reasons. An Asian lady experienced language andcultural barriers in hospital. People who had to be hospitalised quite regularly becausetheir condition made it difficult for them to cope with infection did not like to go intohospital because of the fear of picking up more serious infections in the hospitalwards. Losing choices within a hospital environment was another reason why someinterviewees would choose to have health care delivered at home.
Interviewees who had experienced a sudden onset of a disabling condition, inparticular, prioritised good quality services and shorter waiting lists over hospitallocation. A few people said they would prefer to see a doctor more quickly eventhough it involved more travel. Interviewees’ personal experiences influenced theirchoice of hospital. A stroke patient, who was conscious when taken to hospital byambulance, was given a choice of two hospitals, the local general hospital or thespecialist hospital which was further away.
If I’d have been unconscious they’d have taken me to [local hospital] but because I wasconscious they took me to [specialist hospital further away] … I don’t think I would havegot as far as I have if it hadn’t have been for the places I went to … everybody there hadbeen trained specifically for stroke patients. (AS-130)
For parents of children with complex conditions who used multiple health services thepriority was having all the care delivered to their child in one place. They thought thisfacilitated communication between the health professionals and led to better qualityof care.
What treatments to have
In general, most interviewees with fluctuating conditions who had lived with theircondition for years felt that their experiences of making previous choices had madethem ‘expert’ patients who knew how to make treatment choices. While they allvalued having professional advice, they wanted to use their previous experiences inmaking similar choices about their health. For example, one person who hadsuffered from side effects of standard drugs for many years talked about howcomplementary therapies helped her to control these side effects and also substan-tially reduce the number of drugs she used to take. Another person who had experi-enced repeated operations said she would prefer, wherever possible, to have a localanaesthetic to a general one in order to minimise the after effects she had experi-enced in her previous operations. These findings suggest that people with longstanding conditions may acquire a wide range of personal and experiential informa-tion to support choice:
I had the choice of three medications to start with and … they told me which one wouldprobably be beneficial to me the most. … But no that wasn’t the way I saw it …it’s mybody, I’m going to decide what I’m going to do … So I did and I had a bad reaction tothe other two as well, so. (AF 101)
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
832 P. Rabiee and C. Glendinning
Evidence from this study also suggests that choice about treatments is conditional andcircumstance specific; a drug that is considered too risky at one time may be consid-ered a risk worth taking at another time if the condition becomes very uncomfortablefor the person to tolerate and/or if the person feels more informed about possible risks.For example, one parent delayed the decision to go on a drug which would relieve herpain but made her very drowsy until her children started full-time school. For someparticipants reducing the risk of ending up in hospital was the overriding factor thatled them to choose to take a drug which they would otherwise consider too risky.
As other research has also shown, the findings from this study reveal that choicemaking in health care can at times be unwanted (Barnett, Ogden, and Daniells 2008).Interviewees who had experienced a sudden deterioration of their health were morelikely to say that they simply wanted ‘the best’ and would be happy to accept lesschoice in areas they did not know enough about and/or when they were not wellenough to make decisions for themselves.
[I am] not in favour of all this choice business … when you’re ill you need people tomake choices for you … I simply want the best. I don’t want … to make choices whereI don’t have the information myself as to how to make a decision … that’s up to theexperts, to decide, not me. (OS-214)
Not many children and young people talked about the importance of choice in relationto their healthcare. Those who did said that the decisions about their healthcare weretaken by the hospital and their family members. They were happy with the decisionsmade for them but they wanted more say in their healthcare when they got older.
Equipment
As highlighted by other research, equipment was identified by participants as one ofthe most common area of services where choice was important (Williams et al. 2008).
Concerns for independence
Almost all adults and older study participants said that their illnesses removed manychoices from them but there were still choices they wanted to make with regards tothe type of equipment they used. First and foremost, they wanted equipment to be suit-able for them and responsive to their aspirations for independence. A number ofrespondents said their choices were constrained by eligibility criteria:
I’ve already had people just give me things that didn’t work or tell me I can’t have, theysaid, ‘You fit the criteria for a wheelchair so we’ll give you a self-propelled chair, butphysically you cannot self-propel a chair because it’s your thoracic spine, but you don’tmeet the criteria for an electric wheelchair which means we can’t give you one. So eventhough … you medically need it, you have to be a full time wheelchair user to get anelectric wheelchair, and … if you’re not using it in the house then you’re not a full timewheelchair user’. (AS-125)
Concerns for identity and self-esteem
The findings also showed a clear link between choices relating to equipment and iden-tity. Adults and older participants wanted to avoid stigma felt to be associated with
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
Disability & Society 833
being labelled ‘disabled’ and ‘old’. A number of people noted that occupational ther-apists were only concerned about what equipment people needed, with no regards forhow their lives would be affected by it. For example, one person said that she decidedto buy a commode from eBay because the ones provided by the NHS ‘make yourhouse look like a hospital’. Some preferred a stair lift to a ceiling lift, as they felt thelatter would make the house look like a ‘disability house’.
Adults whose support needs fluctuated particularly valued equipment-relatedchoices that enabled retention of their identity as a non-disabled person as long aspossible.
When she [OT] first mentioned me having a wheelchair I was absolutely furiousbecause, you know, I was saying to her, ‘Don’t you realise I’m trying to do as much asI can for myself, if I get a wheelchair I might as well give up’ … the important thing thatswayed me was her saying it was about choice … and this fits in with my fluctuatingcondition … when I’m fit and able I don’t have to use it. (AF-105)
For interviewees who had experienced a sudden onset of a condition the choice ofhaving equipment as and when they needed it was essential. Lack of choice, eitherbecause people could not have what they wanted when they needed it or they did notlike what statutory services offered them, often made people purchase equipmentprivately.
Housing and adaptations
Reinforcing other research, most adults and older participants in this study argued thatchoice was important in relation to their housing and home environment because itlessened their need for help from others (French and Swain 2006). Living in the centreof town where people could access facilities easily, or near relatives who could givethem extra support were desired options identified by some older interviewees. For anumber of parents, the choice of housing was limited to areas where their child couldhave access to a social life.
Planning ahead for future housing needs was particularly important to inter-viewees with fluctuating support needs, who wanted to be prepared before their condi-tion deteriorated. Many felt that housing choices were often constrained because ofprofessionals’ lack of understanding of the unusual way certain conditions presentthemselves. For example, one person with Multiple Sclerosis (MS) living in rentedaccommodation had asked for a ground floor flat as she knew she would soon findsteps difficult to manage. Her application was not accepted because at the time she didnot have problems managing the steps. She had to provide medical information abouther condition before her application was reconsidered.
Interviewees who owned their homes said that their choice of housing had beenaffected by their current or future anticipated needs. Other interviewees wanted to beable to make similar choices before they became frailer. Many people valued havingadaptations that took into account their personal preferences but felt that there was anexpectation that disabled people would compromise when using services. One inter-viewee needed a kitchen where she could get her wheelchair under the units. She saidsocial services had designed her a kitchen that was only suitable for someone wholived on pre-cooked food which only needed warming. She decided to have herkitchen converted privately in the way she wanted.
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
834 P. Rabiee and C. Glendinning
Education/training
Supporting evidence in other research, for parents the choice of education for theirdisabled child was not so much about mainstream versus special school but whetherthe school was best suited for the child in the long term (Priestley and Rabiee 2002).Concerns about safety and physical accessibility, access to health care support, inclu-sion in school activities and staff attitudes were among the key factors affectingparents’ choice of school for their disabled child/ren. Parents of children with deteri-orating physical conditions felt that their choice was often restricted to a specialschool because of child’s need for an adapted environment, even though it would notmeet the child’s academic potential. On the other hand a few parents felt they werepressurised to put their child in a mainstream setting. With hindsight, they regrettedthe decision because it appeared that it was not in the long term interest of the child.Most parents felt that limited choices in the education system for their disabled chil-dren made families either accept what they were offered, or pay for an alternative. Oneparent reported that bullying was a big issue in her child’s school and it could put himoff from going, but there was no alternative option.
Some disabled parents with dependent children felt that their own choice of train-ing was limited by the lack of affordable and appropriate child care for their disabledchild. A single mother suffering from MS, whose child also had an unpredictablecondition, said that she had to give up her training and with that her desired careerbecause she could not afford the specialised child care support she needed. Shethought her choice of training would only be meaningful if she had access to anetwork of support both for herself and for her son.
They say that university is adult learning so you’re going in there, you should have madeyour choice already, so if you forfeit whatever you’re supposed to do, that, that’s yourfault because you knew when you were coming in what was expected of you … therewas no support for adult learning … you’ll always need support as long as you’re learn-ing, but university doesn’t see it that way. (AF 122)
Social care
In relation to social care services the choices that were important for people were whodelivered the service, how flexible it was and timing of the support. A few peoplereported that these choices were only possible when social care was provided byprivate agencies rather than local authority in-house services:
They [social services] sent us a list of 10 people and said, ‘You can’t choose whether ornot you have a male or female carer’ … they had to send whoever came. They wouldn’tgive me the specific hours … there really was no choice, well there was a choice tomake … the choice was either take what you’re given, no matter what it is … or adapt.(AS 125)
A number of respondents said they were early risers and were up, dressed, and hadbreakfast (though with great difficulties) by the time their carers arrived. Others werenot ready to go to bed when their carers turned up, or the carers arrived a couple ofhours after they had gone to bed. The lack of choice had led some people to give upthe home care service allocated to them either entirely or for part of the day.
A few people who were not happy about their previous experience of services saidthey had turned to their partners for social care support. While this often gave people
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
Disability & Society 835
flexibility, a number of people said they made the choice unwillingly because theywere concerned about the likely impact this would have, both on their family life ingeneral (e.g. by the partner having to give up their job) and on their personal relation-ship with their partner. One person said she had lost certain choices since her husbandbecame her carer:
I used to take a shower every day … I had to amend those expectations … like he said,‘I like washing your hair but I don’t like going to work smelling like fruit salad, couldwe use a different shampoo?’ … so there were lots of things that we had to look at aspart of that decision making process. (AS 125)
For some people, having the same carer was more important than having a choiceabout who the carer was, particularly for interviewees who had acquired a suddenhealth condition, who were going through a new learning experience. They neededcontinuity to help them adjust to a situation they were not familiar with:
Everything is new to me and it’s adjusting, and for them, of course for them to adjust tomy needs. They don’t know what I need, I don’t know what I need. So it’s trial and error… I can’t, I’ll not say it’s been easy for either of us. (AS 117)
Maintaining continuity with the carer was also important for children and parents asit often took time for the child to feel comfortable with a carer:
It’s mainly my everyday cleansing and things like that, ’cos I’m very particular abouthow I do things and that’s why I only have carers that I’ve known for a while becausethey know how I do things, so obviously like my mum’s done me for like all my life andI’ve known my Carer No.1 [college] for, well she used to be at my High School as well,so I’ve known … her for about six years, so. But other than that I just tend to make deci-sions for myself, as many as I can, to give me independence, so. (YP 006)
Social care arrangements could generate tensions in choices involving a trade offbetween adapting to new circumstances and maintaining identity. For example, anadult with a fluctuating condition explained how difficult it was for her to wash herhair. She approached an OT for help:
‘My hair is heavy and thick, I struggle to wash it’ she [OT] said ‘well cut it, make itshort’, I said ‘I’ve always had long hair’ and she said, ‘Yeah, but it’ll be easy to take careof it if it’s short’ I said ‘Yeah, but that’s not me, why do I have to be somebody otherthan me?’ … it would just make me more depressed about what I’ve lost … I didn’t wantto be any more disabled than I already was, I didn’t want to feel like I need to cut myhair … I wanted to stay me. … Nobody said ‘Do you have trouble getting that done?’(AS 125)
Employment
The importance of having choice in relation to employment was raised by the workingage adults. They associated employment with financial security and were concernedthat having to take time off work would threaten that security. Ideally, they wanted achoice of flexible jobs and employers who understood their condition and weresympathetic to their needs. Interviewees with fluctuating conditions such as MS wereparticularly anxious about their employer’s lack of understanding of their conditionand how it affected them. A number of respondents reported they had to change their
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
836 P. Rabiee and C. Glendinning
hours from full time to part time or tried different jobs, but it was still not working forthem so they reluctantly ‘chose’ to give up work. Several participants felt that doingvoluntary work or a job ‘you would not dream of doing’ otherwise, were their onlyreal options.
Leisure and transport
The importance of having a choice over leisure facilities and destinations was raisedby the participants from all the study groups. Disabled parents with dependent chil-dren felt keeping up such activities would contribute to the well-being of their wholefamily. However, choices were often constrained by lack of accessible and affordablefacilities. People who had more recently started to use equipment felt they had lostchoices because they could not access the same facilities. For example, someone whohad recently started using a wheelchair reported:
We went to the theatre … the only disabled seating they had required the wheelchair toface the row rather than the stage. So I had to turn my body, which I don’t do well, towatch the show, which meant that by the time I got home I couldn’t move … so I justhad to be hurt, and when you face that all the time … you just cease to engage. (AS 125)
Participants’ leisure choices were restricted further by the availability of accessibletransport (e.g. Dial-a-Ride). Some transport services were reluctant to take them todistant locations that had more facilities. Older interviewees wanted to get out morebut this was only possible if they had access to door-to-door transport. Parents ofdisabled children felt restricted in where they could go and what they could do as afamily.
Discussion and conclusion
Reinforcing the argument for personalisation, the examples provided above give aclear picture of how important and complex ‘choice’ is. Almost all respondents inter-viewed in this study felt that having choice was important because it helped improvehealth and maintain independence. It also helped to retain chosen identities and lifestyles as well as maintain relationships within families. However, respondents felt itwas only possible to exercise choice if choices were ‘real’ – i.e. there were two ormore potentially acceptable options – and able to deliver desired outcomes. The find-ings show that despite the policy emphasis on ‘personalisation’ there were many situ-ations where there were no choices. The only options available were not necessarilydesired options that could meet individual preferences and circumstances. Many inter-viewees, therefore, felt that the only choice they could make was often no more thanaccepting the ‘least bad’ option (Boeije, Duijnstee, and Grypdonck 2003) and that didnot count as a ‘real’ choice.
The findings reveal that the choices people make and the priorities they give tochoices in different domains are shaped not only by their age and the nature and sever-ity of conditions but also by previous experiences of services, future expectations, theavailability of information, individual preferences, family responsibilities and the roleof others providing support.
The importance of learning over time and how this can shape experiences ofchoice making was also highlighted in the findings. People with fluctuating conditions
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
Disability & Society 837
tended to become better at making ‘informed’ choices as they acquired experience oftheir condition and knowledge of service options. In contrast, among intervieweeswith sudden onset of disabling conditions, some preferred to rely on ‘the experts’ tomake choices for them, because they did not have any opportunity to make ‘informed’choices (given the unexpected circumstances) and/or they were too ill at the time tomake their own decisions. Further rounds of interviews in this longitudinal study willenable us to track whether the priorities attached to choices in different domainschange over time and the factors that shape those changing priorities.
Since 2008, patients have had the right to choose hospitals for elective treat-ments. However, in terms of prioritising choices, the findings show that the choiceof hospital was not necessarily the most important choice that interviewees in thisstudy wanted to make about their health care. Some people wanted to be able tochoose complementary therapies instead of conventional medication. Among theolder interviewees, many prioritised receiving treatment at home over going tohospital. Parents of children with long-term conditions wanted to be more in controlof how their child’s healthcare was managed. Moreover, the choices people wantedto exercise were not just about their health care. For example, older people andparticipants with fluctuating conditions wanted to make choices over their futurehousing needs in anticipation of a possible time when their independence might befurther reduced.
The findings also show that, more often than not, choices were made in the contextof care giving and family relationships where the outcomes for more than one personwere considered. For example, participants with dependent children strongly felt thattheir choices were influenced by their family responsibilities. Adults and older inter-viewees were concerned about the long-term effect their circumstances might haveboth on their partners and on their relationships with their partners. Their choices weretherefore shaped by consideration of the needs of, and potential outcomes for, closefamily members.
The findings reported in this paper have important implications for policy andpractice and in particular the role of services in addressing the key factors constrainingchoices. They suggest that current policy mechanisms to increase choice (e.g. hospitalchoice or direct payments/personal budgets) are relatively limited and may not coverall the areas where choices are important such as housing, leisure, employment andequipment.
The study has shown that to enable people to exercise choice and control over awide range of everyday activities, there needs to be options that people can choosefrom. Those options need to be responsive to people’s needs, family obligations,personal preferences and future expectations. Examples provided show that what mostpeople interpreted as ‘choice’ was about having access to good services/availableoptions and these still appear limited for some people. Moreover, information is anessential precondition for the exercise of choice. Therefore, services need to ensurethat accessible information is available to enable people make ‘informed’ choices. Thefindings also show that people’s needs can change over time due to a range of circum-stances or can arise unexpectedly. This highlights the need for services to adopt a flex-ible approach to accommodate changing and unexpected needs as well as providingopportunities for planning ahead for anticipated needs. So, while the potential of thepersonalisation agenda is immense, evidence from this study suggests that for thechange to be effective, it will need nuanced understanding of ‘choice’ as experiencedby disabled and older people and their families.
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
838 P. Rabiee and C. Glendinning
AcknowledgementsThe research project reported in this paper was funded by the Department of Health. However,any views expressed are those of the authors alone. We would like to thank all of the peoplewho took part in this project and the agencies helping with recruitment of the participants. Wewould also like to thank the research team, K. Baxter, J. Heaton, H. Arksey, W. Mitchell andP. Sloper for their invaluable contribution to this project.
ReferencesArksey, H., and C. Glendinning. 2007. Choice in the context of informal care-giving. Health
and Social Care in the Community 15, no. 2: 165–75.Barnes, C., ed. 1993. Making our own choices: Independent living, personal assistance and
disabled people. Clay Cross: British Council of Organisations of Disabled People.Barnett, J., J. Ogden, and E. Daniells. 2008. The value of choice: A qualitative study. British
Journal of General Practice 58, no. 554: 609–13.Baxter, K., C. Glendinning, and S. Clarke. 2008. Making informed choices in social care: The
importance of accessible information. Health and Social Care in the Community 16, no. 2:197–207.
Beresford, B. 2003. The community equipment needs of disabled children and their families.Research Works, 2003–01. York: Social Policy research Unit, University of York.
Beresford, B., and P. Sloper. 2008. Understanding the dynamics of decision-making andchoice: A scoping study of key psychological theories to inform the design and analysis ofthe Panel Study. York: Social Policy Research Unit, University of York.
Boeije, H.R., M.S.H. Duijnstee, and M.H.F. Grypdonck. 2003. Continuation of care-givingamong partners who give total care to spouses with multiple sclerosis. Health and SocialCare in the Community 11, no. 3: 242–52.
Burchardt, T. 2005. The education and employment of young disabled people. Bristol: ThePolicy Press.
Cabinet Office. 2005. Improving the life chances of disabled people. London: Cabinet OfficeStrategy Unit.
Campbell, J., and M. Oliver. 1996. Disability politics: Understanding our past, changing ourfuture. London: Routledge.
Clark, J., N. Smith, and E. Vidler. 2005. Consumerism and the reform of public services;inequalities and instabilities. In Social policy review 17: Analysis and debate in socialpolicy 2005, ed. M. Powell, L. Bauld and K. Clarke. Bristol: The Policy Press.
Department of Health. 2005. Independence, well-being and choice. Our vision for the futureof social care for adults in England. Cm 6499. London: Department of Health.
Department of Health. 2008. Transforming social care. Local Authority Circular, LAC (DH)(2008) 1. http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_082139.pdf.
Department for Work and Pensions. 2005. Opportunity age. Meeting the challenges of ageingin the 21st century. London: Department for Work and Pensions.
Dowse, L. 2009. ‘Some people are never going to be able to do that’. Challenges forpeople with intellectual disability in the 21st century. Disability & Society 24, no. 5:571–84.
Fine, M., and C. Glendinning. 2005. Dependence, independence or inter-dependence? Revis-ing the concepts of ‘care’ and ‘dependency’. Ageing and Society 25, no. 4: 601–22.
French, S., and J. Swain. 2006. Housing: The users’ perspective. http://www.leeds.ac.uk/disability-studies/archiveuk/swain/housing%20chapter.pdf.
Glendinning, C. 2008. Increasing choice and control for older and disabled people: A criticalreview of new developments in England. Social Policy and Administration 42, no. 5: 451–69.
Grewel, I., S. McManus, S. Arthur, and L. Reith. 2004. Making the transition: Addressingbarriers in services for disabled people. Research Report 204. London: Department forWork and Pensions.
Hart, C., C. Shane, K. Spencer, and A. Still. 2007. Our lives, our communities: Promotingindependence and inclusion for people with learning difficulties. York: Joseph RowntreeFoundation.
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
Disability & Society 839
HM Government. 2007. Putting people first: A shared vision and commitment to the transfor-mation of adult social care. http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_081119.pdf.
Lent, A., and N. Ardent. 2004. Making choices. How can choice improve local publicservices? London: New Local Government Network.
Lloyd, L. 2003. Caring relationships: Looking beyond welfare categories of ‘carers’ and‘service users’. In Reconceptualising work with carers, research highlights in social work43, ed. K. Stalker. London: Jessica Kingsley.
Miles, M., and A. Huberman. 1994. Qualitative data analysis: An expanded source book, 2nded. Thousand Oaks, CA: Sage.
Morris, J. 1991. Pride against prejudice. London: Women’s Press.Morris, J. 2004. Independent living and community care: A disempowering framework.
Disability & Society 19, no. 5: 427–42.Morris, J. 2005. Citizenship and disabled people: A scoping paper prepared for the Disability
Rights Commission. Manchester: Disability Rights Commission.Morris, J. 2006. Independent living: The role of the disability movement in the development
of government policy. In Cash and care: Policy challenges in the welfare state, ed. C.Glendinning and P.A. Kemp, 235–48. Bristol: The Policy Press.
Parry, J., S. Vegeris, M. Hudson, H. Barnes, and R. Taylor. 2004. Independent living in laterlife: Report of research carried out by the Policy Studies Institute on behalf of the Depart-ment for Work and Pensions. London: Department of Work and Pensions.
Priestley, M. 1999. Disability politics and community care. London: Jessica Kingsley.Priestley, M., and P. Rabiee. 2002. Hopes and fears: Stakeholder views on the transfer of
special school resources towards inclusion. International Journal of Inclusive Education6, no. 4: 371–90.
Robertson, J., E. Emerson, C. Hatton, J. Elliot, B. McIntosh, P. Swift, E. Krinjen-Kemp, et al.2005. The impact of person centred planning. Lancaster: Institute for Health Research,Lancaster University.
Schwartz, B. 2004. The paradox of choice: Why more is less. New York: Harper Books.Shakespeare, T. 2000. The social relations of care. In Rethinking social policy, ed. G. Lewis,
S. Gewirtz and J. Clarke. London: Sage.Vernon, A., and H. Qureshi. 2000. Community care and independence: Self-sufficiency or
empowerment? Critical Social Policy 19, no. 5: 443–54.Williams, B., P. Copestake, J. Eversley, and B. Stafford. 2008. Experience and expectations
of disabled people: A research report for the Office for Disability Issues. http://www.odi.gov.uk/docs/res/eedp/eedp-full-report.pdf.
Dow
nloa
ded
by [
Uni
vers
itat P
olitè
cnic
a de
Val
ènci
a] a
t 05:
35 2
6 O
ctob
er 2
014
