Journal of Intellectual Disabilities

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Listening to the views of children with learning disabilities: An evaluation of a learning disability CAMHS service Paul Boyden, Michelle Muniz and Martha Laxton-Kane Journal of Intellectual Disabilities published online 20 December 2012 DOI: 10.1177/1744629512469923 The online version of this article can be found at: http://jid.sagepub.com/content/early/2012/12/20/1744629512469923

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Article

Listening to the views of children with learning disabilities: An evaluation of a learning disability CAMHS service

Journal of Intellectual Disabilities 1–13 ª The Author(s) 2012 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629512469923 jid.sagepub.com

Paul Boyden Sheffield Health and Social Care NHS Foundation Trust, UK

Michelle Muniz NHS Greater Glasgow and Clyde, UK

Martha Laxton-Kane Chesterfield Royal Hospital Foundation Trust, UK

Abstract In line with Valuing People Now: A New Three-year Strategy for People With Learning Disabilities (Department of Health, 2009), this article details a service evaluation for a learning disabilitychild and adolescent mental health service (LD-CAMHS) in Chesterfield, North Derbyshire. The aim of the project was to produce a set of quality standards in order to ensure service users’ needs are met. Semi-structured interviews were conducted with seven children between the ages of 11 and 17 years, with moderate to severe learning disabilities. Four themes were derived from a thematic analysis; the experience of the service, communication, impact of the work carried out, and difficulties encountered. It was recommended that staff working within the service should ensure communication is at a level appropriate for the client; offer a welcoming approach; provide an open approach; and offer a reasonable choice of location. This article provides suggestions for how other LD-CAMHS teams could use these standards for their own purposes. Keywords clinical psychology, intellectual disabilities, mental health, research, qualitative Date accepted: 12 November 2012

Corresponding author: Paul Boyden, Clinical Psychologist, Sheffield Health and Social Care NHS Foundation Trust, West CMHT, Wardsend Road North, Sheffield, S6 1LX, UK. Email: [email protected]


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Journal of Intellectual Disabilities

Introduction Little research has explored the experiences of the children with learning disabilities who have used a learning disability child and adolescent mental health service (LD-CAMHS) within the National Health Service (NHS). Valuing People: A New Strategy for Learning Disability for the 21st Century states that ‘it is no longer acceptable for organisations to view individuals with learning disabilities as passive recipients of services: they must instead be seen as active partners’ (Department of Health, 2001, p. 51). More recently, the transformation towards greater personalisation within social care holds important implications for NHS staff (Social Care Institute for Excellence, 2010). It is strongly suggested that processes are put in place to manage the expectations of service users and carers once NHS services are set up and running smoothly. Furthermore, to ensure personalised care planning is tailored for people with learning disabilities, service users should be actively engaged in the process rather than passive recipients. There are a number of implications from UK law that provide a rationale for the commissioning of this project. The Disability Discrimination Act (2005) and recent Equality Act (2010) advocate all service providers must make reasonable adjustments to ensure disabled people can access services. The Chesterfield LD-CAMHS was launched in January 2008. It was commissioned to meet the needs of children who present with moderate to severe learning disabilities by helping to alleviate mental health problems and challenging behaviours and to help improve relationships and quality of life. The service consists of a multidisciplinary team made up of clinical psychologists, consultant psychiatrist, learning disability nurses, support workers, speech and language therapist, and an occupational therapist. In line with the Chesterfield Royal Hospital NHS Foundation Trust’s Patient and Public Involvement Strategy (Chesterfield Royal Hospital Research Services, 2003), which emphasises the importance of listening to the views of patients in matters that concern them, this project endeavoured to involve and explore the experiences of children accessing the Chesterfield LD-CAMHS with a view to producing a set of service-user led ‘standards’ for future service provision.

Methodology Design More recently, there is a growing expectation that research in the field of learning disabilities should be inclusive and participatory in nature (Walmsley, 2001). It is well documented how people with learning disabilities are often excluded from research and that there are a number of inequalities in the provision of health services that must be addressed (Chappell, 2000; Emerson and Baines, 2010). Kiernan (1999) argues that cognitive and linguistic deficits may prevent the full involvement of all people with learning disabilities, but that it is important they participate in research by contributing their views. There is a small growing body of literature detailing the process of interviewing adults with learning disabilities around their views on service provision (Jones and Stenfert Kroese, 2006; Parkes et al., 2007; Preece and Jordan, 2009; Smyly and Elsworth, 1997; Whitehurst, 2006; Young and Chesson, 2006) but even less on the views of children with learning disabilities (Brown and Guvenir, 2008; Lewis and Porter, 2004; Mill et al., 2008). The use of surveys and questionnaires with individuals with communication difficulties contains a number of limitations such as acquiescence and recency effects (Sigelman et al., 1982). Questionnaires can also be ineffective research tools due to the reading and writing skills required (Malik et al., 1991). However, individuals with mild to moderate learning disabilities can


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contribute to research in other ways and are quite capable of being interviewed and to comment on their lifestyle (Sigelman et al., 1983). Therefore, this project adopted a semi-structured interview design to explore the participants’ thoughts and opinions of their experience with the service.

Participants A convenience sample of seven participants with a moderate learning disability, aged 11–17 years and living in the community was put forward by members of the team. These clients had received input from the service around mental health issues within the past 3 months. This may have involved work centred on a wide range of issues, for example, anger, puberty, and anxiety. In a typical 3-month period, the service has a caseload of around 25 clients. Thus, the sample represented nearly a third of the total number of individual clients seen by a professional in the past 3 months. Individuals with additional needs (such as epilepsy or sensory impairments) or a dual diagnosis of a pervasive developmental disorder were not excluded from this study in order to ensure the sample was representative of clients typically accessing this service. Participants were required to have suitable verbal skills in order to be able to engage in a semi-structured interview lasting 20–40 min, and the ability to contribute novel information and express their opinions. Therefore, the findings from this project may not generalise to children with profound learning disabilities. Table 1 provides a brief pen profile of the seven interviewees (each have been given pseudonyms) who participated in this study.

Ethical considerations As this was a clinical service evaluation, NHS ethics was not required. Instead, the Trust’s Research and Development department was informed and the routine ethical procedures when working with people with learning disabilities were followed. For instance, Cameron and Murphy (2006) emphasise the importance of accessible versions of consent forms and highlight that more time needs to be made available to gain consent. Thus, a short accessible typed consent form was provided to the participant and fully explained verbally. In some circumstances, there was a short time delay between obtaining consent and time of interviewing; thus, this procedure was repeated again on the day of the interview due to memory difficulties and to ensure participants were fully informed of the aims of the project. Due to lack of capacity to fully comprehend consenting to this study, parental/guardian consent was also obtained.

Interview schedule All interviews took place at the participant’s home, school, or within the clinic. The semistructured interview schedule was pilot tested with the first two participants, after which the questions changed slightly to ensure they were easy to understand and held good face validity. Jargon and double barrel questions were avoided, and simple language embedded in simple sentence constructions were used as much as possible. It was considered that each participant may not be able to answer all the questions listed on the schedule. Therefore, a selection of visual aids (e.g. photographs of professionals and pictures) was used to accompany the questions asked. In addition, all the questions from the interview schedule had alternative rephrased versions that were used if participants struggled to initially understand the questions asked. It has been reported that the use of visual rating scales within research with individuals with learning disabilities can provide those with limited communication skills further opportunity to


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11

12

17

13

12 14

Peter

Julie

Toby

Alfie

Lisa Kevin

Supported accommodation Family home

ERP: exposure and response prevention.

Female Family home Male Family home

Male

Male

Female Family home

Male

Learning disability Learning disability

Learning disability

Learning disability

Learning disability and Autistic Spectrum Disorder Learning disability

Learning disability

Supported accommodation Family home

14

John

Male

Diagnosis

Participant’s Age Living name (years) Gender arrangements

Table 1. Pen profile of the participants

Parental separation Sexuality/inappropriate behaviour

Psycho-education on sexuality and ERP Psycho-education on sexuality and ERP Narrative therapy and relaxation skills teaching Person-centred therapy Psycho-education on sexuality and ERP

Psycho-education on sexuality and ERP

Sexuality/inappropriate behaviour

Sexuality/inappropriate behaviour Social phobia and inappropriate behaviour Anger issues

Anger management

Type of intervention

Fire-setting/anger

Issues participant was struggling with/reason for referral

Psychologist Support worker and psychologist

Psychologist

Psychologist and support worker Support worker

Support worker

Psychologist

Clinician offering the intervention

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express their opinions and assist individuals with learning disabilities to facilitate decision making. For example, Fender et al. (2005) asked their focus group participants to choose from three verdicts: good (smiley face), unacceptable (frowning face), or neutral (neutral face). Therefore, each participant was asked to choose from these three verdicts represented with the words ‘good’, ‘bad’, or ‘could have improved’ and a facial expression to evaluate their experience with the service overall. A tick and a cross were also added for instances when clients with autism were unable to understand the facial expressions shown.

Analysis The transcripts were analysed using a thematic analysis following the standard procedure of data familiarisation, coding, and the identification of themes (as outlined by Howitt and Cramer, 2011). This enabled a number of higher order themes emerging from the data to be listed and described in a way that will highlight to the service the key areas that the participants described in their experience of receiving the service.

Results Four themes with evident subthemes emerged from the data: experience of the service, communication, impact of the work carried out, and difficulties encountered. Each of these has been described below with illustrative quotes.

Experience of the service Rapport with the service member. All participants could recall the first time they met with the professional from the service, and all participants reported feeling scared and anxious at this time. . . . I felt much better than I were. I was scared before. . . . I told her my name and [asked] what’s her name and then this made me feel ok.

There were a number of things the participant liked that put them at ease. These included handshakes, humour, what the staff wore, high fives, and smiles. People should be smiley and polite and nice to me. Shaking hands makes me feel happy.

The participants explained how this helped them build a good positive relationship with the professional. They also thought it was good to talk about their interests and involve these in some way, such as being shown favourite comics or talking about music. Talking about my interests. Things I am interested in. I talked about things I liked doing. That’s important isn’t it?

Practicalities of meeting with the service. Participants had varying preferences for where they met with the professional. I prefer my house . . . because it’s quiet, I don’t like a lot of noise.


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However, others preferred to meet at school or the clinic due to better privacy. . . . because my sister is at home, she wants to be nosy what we are talking about.

Other participants preferred to keep their family involved. Sometimes better to talk at home so mum can know what is being talked about.

One participant said it was important to have the choice of whether they would like the session to happen. . . . it is good to know when people are coming. . . . okay to call ahead and cancel if I want.

Communication The value of talking. Participants appeared to value the element of simply talking. The conversations with them have been good. I talked about when I sometimes got stressed and when I’m feeling worried about things. She talks really well and understands me very much. . . . because it helps me to understand . . . like, explained it much better. . . . just talked . . . to get a problem solved! I talked about problems at school. That’s important. Talked about what happened in the past.

A few participants struggled to explain why talking really helped. This may have been due to the nature of the question being quite abstract. It just changed things. . . . don’t know. It’s hard to describe.

Metaphors and creativity. Although participants valued talking, they explained the use of creative and interactive tools, such as books, pictures, play dough, and drawings that helped them to communicate their feelings and thoughts to the professional. Interviewer: Is it better to draw or talk or both? Participant: Both actually . . . drawing is good because it is relaxing.

Examples included the use of a traffic light system to understand when a behaviour was acceptable (green) or unacceptable (red). Other examples reported included games, drawings, pictures, books, and humour. This level of creativity seemed important for engaging with the participant. For


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example, the use of imagery and metaphors to understand feelings such as anger was useful to one participant: Participant: I used to get angry when the volcano came . . . it explodes when you’re angry. Interviewer: So when you get stressed you close your eyes and imagine a green field? Participant: Yeah, or imagine being under the sea.

Impact of the work carried out Insight and recollection of the work. Participants talked about the problems they were addressing with the service and showed good insight as to why the professional was supporting them. So I don’t talk to strangers. I remember my college lessons caused anxiety. Because me and my mum had a big fallout.

Soft outcomes as a result of the work carried out. Participants were also able to state what has changed as a result of accessing support from the service. I know the dangers now. I know not to mess with fires anymore. I know what to do and what not to do. I know what is bad behaviour. . . . better understanding. . . . to explain feelings. I don’t get angry lots. I used to. . . . has made me more confident.

Difficulties encountered There were only a few things that could have improved the participants’ experience of accessing the service. In relation to communication, one participant expressed their disappointment that the professional was writing a lot in front of them. Erm, I didn’t like that she writes it quick because I didn’t understand very well.

The client was unsure who the professional was writing things down for, and that they had used long words to do so. A number of clients wished for more sessions. I wanted to talk more about the problems I had.

However, it is unclear whether this reflected the social element of the contact the clients had with the professional and that they wanted this to continue.


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Table 2. Opinions of the service (overall satisfaction)

Number of participants

Good

Could have improved

Bad

5

2

0

Table 3. Recommendations Standard

How standard is met

Communication should be at a level appropriate to the client

1. 2. 3.

How standard is measured

Clinician introduces self Clinician talks to client Clinician communicates with client appropriate to level of ability

Welcoming approach

1. 2. 3.

Openness of approach

1. 2.

Offer a reasonable choice of 1. location 2.

Leaflet sent out with initial appointment Clinician introduces self and explains role Clinician listening to the client and responding to what the client says/ does Clinician communicates with client appropriate to level of ability Clinician discusses and explains formulation/intervention as is appropriate for client Offer initial home visit. Offer reasonable choice of location

Observation by another clinician—for clinician communicating appropriately Reference to conversations and how adapted in notes Reference to appropriate communication in notes Check if leaflet sent out with initial appointment (noted on assessment form) Reference to introducing self in notes (or on assessment form) Observation by another clinician—for clinician listening Observation Reference to conversation in notes Reference to appropriate communication in notes Reference to conversation in notes

Client satisfaction Each participant was asked to choose from three options (with accompanying pictures) to rate their overall satisfaction following their experience of the service. Table 2 shows the majority of participants rated the service positively. A set of four service standards have been derived from the results of the interviews (Table 3). The standards have formed the above protocol which the service will endeavour to meet to ensure future clients have their needs met. It would be worthwhile replicating this project at a later date in order to ensure the service is up to date in meeting the needs of the clients it serves and to conduct a similar qualitative project with the parents and carers of clients accessing this service to explore how their needs can also be satisfied.

Dissemination The findings of this study were disseminated throughout the team, the Trust’s clinical governance structure, and placed on the service web page. The findings were also disseminated throughout the


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local generic CAMHS team, as there are often occasions where children with mild learning disabilities access their service in-line with social inclusion. The white paper ‘Making written information easier to understand for people with learning disabilities’ (Department of Health, 2010) advocates all written information should be accessible to individuals with learning disabilities to help enable informed choices on the health care they receive and provide a more equal role in society. Thus, an ‘easy-to-read’ version of the report was produced for future service users and is available on request from the authors.

Discussion Previously, the service had commissioned quantitative projects distributing questionnaires to carers of children with learning disabilities. However, no formal evaluation of the clients’ experiences had ever been conducted. Thus, a qualitative design was utilised to conduct a meaningful and in-depth evaluation aiming to explore the clients’ experiences of accessing the service. The project’s secondary aim was to produce a set of standards for performance evaluation and future audits. As part of the services’ drive towards delivering a quality service and achieving high standards, there was a strong rationale behind this project to ensure that future care is clientcentred. In addition, there are a number of government initiatives that underpin this project. For instance, Valuing People: A New Strategy for Learning Disability for the 21st Century (Department of Health, 2001) emphasises that the experiences of service users should be at the centre of service planning and delivery in the NHS. Furthermore, the Trust’s Public Involvement Strategy also states there are no good reasons why service users should not participate in the research that may inform service delivery.

Methodological issues A merit of this project was the inclusion of children with learning disabilities as this population is typically excluded in evaluative research (Chappell, 2000). The authors initially considered setting up a focus group to allow discussions that capture a wide range of views and to provide opportunities for an exchange of differing opinions (Boyden et al., 2009). However, some literature highlights that acquiescence and vulnerability to suggestion from dominant members within this client group can hinder the richness of information contributed (Martin et al., 1997). Although a relatively small sample of seven participants was recruited, the sample represented a third of the size of a typical 3monthly caseload. The sample included participants with a dual diagnosis (e.g. autism) and with a range of mental health difficulties (e.g. anger, bereavement). However, the sample was not entirely representative of the clinical group accessing this service, as a large proportion of clients have profound learning disabilities and little or no verbal skills. Thus, it may have been useful to have included people with little or no speech by using techniques, such as Talking Mats (Brewster, 2004), to support the interviews. In addition, the participants’ ages were 11 and 17 years; thus, the results were not representative of younger children accessing the service. A merit of this study includes the carefully designed interview schedule, which took into account the importance of language used. Consideration was given that some participants would have shorter concentration spans, thus the interviews varied between 30 and 45 min. Given that the researcher was meeting with the participant for the first time and with little knowledge of their communication needs, it was important to ensure that quality accessible material was provided to


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supplement the questions asked in order to support participants’ understanding. In addition, an alternative, rephrased, version of each question was made available for instances where the participant appeared to struggle to understand. The first two interviews helped shape the schedule, allowing the opportunity for any minor changes to be made. However, the questions were generally well understood. The use of visual stimuli (such as photographs of the staff members and smiley/sad faces) also aided participants’ understanding of questions. However, it was important not to assume the addition of these alternative modes of communication was sufficient to make the questions meaningful to all participants (Lewis and Porter, 2004). This was the rationale for asking a support worker to accompany the researcher so that they could facilitate the interview with the use of additional drawings or use of Makaton to help the participant understand. The production of an easy-read version of the final report is a key merit of the project. There is increasing recognition of the importance of disseminating the findings of a study in a format, that is, accessible to those who have participated and their peer group (Goodley and Moore, 2000). The speech and language therapist and support worker both read through the accessible version of the report to help ensure the appropriate use of language and illustrations. However, this could have been further strengthened by involving service users in designing or reviewing these materials at the beginning of the project. The transcripts of the interviews were analysed according to the principles of thematic analysis (Braun and Clarke, 2006). Although thematic analysis is a widely used analytic method in psychology, it is also demarcated and rarely acknowledged (Boyatzis, 1998). However, this methodology was adopted as the small scale nature of this project meant that a complex analysis was not deemed necessary, and it is commonly used when analysing transcripts of people with communication deficits expressing their views in words (Bond and Hurst, 2010; Brown and Guvenir, 2008; Jones and Stenfert Kroese, 2006; Parkes et al., 2007). The analysis of the transcripts proved difficult at some stages. Aside from the short responses, the transcripts also showed much repetition in the answers provided. The researcher noticed there was a lack of emotions described by participants and some provided fairly unusual answers. For instance, one participant became fixated on the clothes worn by the researcher and began to request that staff from the service wear superhero costumes. Given the limited responses provided, the researcher had to be aware of poor or limited communication skills that could have led to ambiguity in the interpretation of their response, and difficulty with clarifying the meaning conveyed. It may have been beneficial to call upon a second clinician to analyse the meaning or message behind the participants’ responses and to validate the researcher’s identification of themes. It was also hoped that a quantitative measure could be administered following the interview. However, a quantitative and scientific investigation underpinning this project was not achieved due to the low number of participants and the lack of standardised measures appropriate for people with severe learning disabilities. Furthermore, triangulation of the data could have supported the design of the study and ensured that parents’ and carers’ viewpoints were incorporated into the service standards.

Clinical and organisational implications A key implication of this study is the development of four standards for future clinical service delivery and future audits. It is suggested that this project is replicated at a later date in order to ensure the service is up to date in meeting the needs of its clients. These standards formed a protocol that the service will endeavour to meet to ensure a high-quality service is delivered that


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ensures clients have their needs met. The authors hope that this framework could be used and adapted for other LD-CAMHS NHS.

Conclusions This article has described an innovative clinical service evaluation within an LD-CAMHS NHS service. Given there is scarce literature detailing procedures around obtaining the views of children with learning disabilities within specialist health services. There are clearly numerous factors to consider when carrying out research projects. For instance, the ethical considerations of adapting consent forms and accessible information sheets. Furthermore, the limitations of qualitative analyses of adults with language difficulties must be kept in mind. However, in line with similar research carried out with adults with learning disabilities (Boyden et al., 2009), this can be overcome and utilised to inform future clinical practice. Finally, this article has highlighted the importance of how although it may be a standard practice in specialist organisations to offer a welcoming and open approach, use clear communication, and provide choice, it is clear that this is valued by children with learning disabilities and services may benefit from a routine check that these requirements are being met effectively. Acknowledgements We are grateful to the service users’ who participated in this study and to the LD-CAMHS team for their support and help with this project.

Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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