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Background: There is relatively little published data that report the experiences and views of family carers of people with intellectual disabilities who display challenging behaviour who are prescribed psychotropic medication. / Materials and methods: An online structured questionnaire was created by the Challenging Behaviour Foundation, a UK charity, and family carers of people with intellectual disability. Questions concerned the management of challenging behaviour and asked family carers about their experiences and views on the use of psychotropic medication. Responses were gathered between August and October 2016. Results are summarised using descriptive and inferential statistics and descriptive analysis of free‐text comments. / Findings: Ninety‐nine family carers completed the survey. Family carers reported gaps in the holistic and proactive management of challenging behaviour. Whilst some felt involved in decisions around psychotropic medication prescribing, others described feeling marginalised and lacking information and influence. The decision to prescribe psychotropic medication evoked complex emotions in family carers and medication use was associated with mixed outcomes in those prescribed. Family carers identified areas of good practice and those areas where they believe improvements are needed. / Conclusions: Psychotropic medication should be only one option in a multimodal approach to challenging behaviour, but this may not always be reflected in current practice. Greater effort needs to be made to ensure that services are equipped to provide optimum care and to embed shared decision‐making into routine practice.

Accessible Summary Lots of people with intellectual disabilities in the UK are given medication to manage their behaviours and the NHS wants this to stop. In Cornwall, we wanted to see how often we give medication to people instead of other health care such as communication or occupational assessments etc. We found that around half the people we work with because of their behaviours get medication to manage their feelings and many do not get other assessments. We want to change this in Cornwall and stop over medicating people by learning from this study. AbstractBackground The use of psychotropic medication to manage challenging behaviours of people with intellectual disabilities is a contentious issue which NHS England has now focused on. This paper looks to evaluate this within the multidisciplinary context. Method Records of clients (n = 106) open to a Community Intellectual Disabilities team for care relating to challenging behaviours were examined. Those recommended psychotropic medications in the absence of a mental health diagnosis were scrutinised for supporting MDT assessments. Results Over half the clients with challenging behaviours were being prescribed psychotropic medications and many of those had very few MDT assessments to inform care. Conclusions This study demonstrates the extent psychotropics are used in the absence of MDT informed support for people with intellectual disabilities and behaviours that challenge. A vision to simply withdraw such medication might be simplistic. Local MDT plans are in development to systematically reduce reliance on this type of restrictive practice.

Accessible summary Some people who find it hard to manage their emotions can be helped by a therapy called Dialectic Behaviour Therapy (DBT). Some studies show that DBT might help people with an intellectual disability. We ran a group to see if DBT helped people coming to the group to feel better and manage their difficult feelings more easily. Group members brought their support staff to the group. We asked people what they thought about the group and asked them to fill in some questionnaires to see whether they felt better. The group seemed to help people, even after the group ended. We think DBT might be a useful treatment for people with intellectual disabilities. AbstractBackground A growing body of evidence supports the use of Dialectic Behaviour Therapy with people with an intellectual disability. Various adaptation have been used in studies exploring the efficacy of this intervention. Method A Dialectic Behaviour Therapy DBT skills training group was attended by people with an intellectual disability and their support staff. Standardised measures of psychological well-being, overall functioning and psychological distress were taken before and after the group and at 4 months follow-up. Qualitative interviews were conducted and analysed using thematic analysis. Results Results suggested an improvement in all areas for three of the four participants, which were largely maintained at follow-up. Conclusions This study adds to the growing literature supporting the use of DBT with people with an intellectual disability. The role of support workers in supporting generalisation of skills is considered. Ideas for improving the quality of future studies are considered.

Accessible summary Both good and bad things can happen when people use the Internet, and people with learning disabilities are not using the Internet as much as other people. Worry about the bad things that can happen online might be one reason people with learning disabilities are not supported to access the Internet as much as other people. We wanted to find out what people without learning disabilities believe about these good and bad things for people with learning disabilities. We wanted to find this out because the way people without disabilities think about the good and bad things online might affect how people with learning disabilities are treated. We found out that people without learning disabilities think that both the good and bad things are more likely to happen to people with learning disabilities when they use the Internet. Abstract Background: Information and communication technologies, with the Internet at the forefront, have the potential to enhance the knowledge, service, employment, development and social interactional opportunities available to people with intellectual disabilities. Despite this, people with intellectual disabilities are not accessing the Internet to the same degree as people without intellectual disabilities. Issues of safety, risk and protection online for people with intellectual disabilities have yet to be adequately investigated, and these currently serve as reasons given for hindering people from gaining online access. Materials and Method: This survey aimed to gauge the views people without intellectual disabilities have of risks and benefits of using the Internet for themselves and for people with intellectual disabilities and to compare self-ratings of risk and benefits to ratings for people with intellectual disabilities. Results: The survey findings indicate that, with only a small number of exceptions, both the risks and benefits of being online were believed to be greater for people with intellectual disabilities compared with those without intellectual disabilities. Greater use of the Internet was associated with increased perception of benefits to being online for both people with intellectual disabilities and for participants. Conclusions: Perceptions of increased benefits suggest more needs to be performed to improve online access whilst a perception of increased risk may help to explain the reduced inclusion of people with intellectual disabilities in the online world.

Accessible summary • People with intellectual disabilities are living for longer than ever before and are experiencing the deaths of their friends and other service users. • This study describes the experiences of people with intellectual disabilities who have lived through the death of a friend or service user from the point of view of staff from intellectual disability and palliative care services. • It is important to understand the experiences of people with intellectual disabilities to try and help people cope with the deaths of their friends. • The study shows that it helps to include people with intellectual disabilities when their friends become unwell and to talk openly with them about what is happening. Summary Research is lacking on the effect of the deaths of fellow service users on people with intellectual disabilities. This qualitative study formed part of a project which aimed to describe the provision of palliative care to people with intellectual disabilities in Ireland and to assess the population’s palliative care needs. We report on findings from 16 focus groups held with staff in which participants described their perception of the experiences of people with intellectual disabilities when other service users die. Interviews were analysed using Framework Analysis. The findings highlight the emotional impact of the death of a friend on people with intellectual disabilities. Situations where staff facilitated the involvement of services users are described, and the study points to the benefits of this approach. Possible barriers to involvement are highlighted. The findings affirm the importance of ensuring that people with intellectual disabilities have a good understanding of the concept of death to alleviate the bereavement experience.

Accessible summary • People with intellectual disabilities are still not being listened to by services. • When upset, people with intellectual disabilities are often seen as mentally ill. • This paper describes a procedure [repertory grid] for understanding how people with intellectual disabilities make sense of their experiences. Summary Many people with intellectual disabilities are still not being listened to by the services providing them with care and support, and when they become upset and frustrated, they are all too readily regarded as being mentally ill. To help people with intellectual disabilities describe and make sense of their experiences and feelings in a non-judgemental manner, and without the need for these experiences to be interpreted and explained, this paper describes the use of an adapted repertory grid procedure developed from George Kelley’s personal construct psychology. Although such an approach has been identified as being particularly suitable for working with people with intellectual disabilities in a person-centred manner, little information has been presented and to remedy this, this paper presents an outline of PCP, its application with people with intellectual disabilities and two case reports to illustrate its use in clinical practice.

i?½ Older people with intellectual disabilities have been telling their life-stories in Ireland. – People remember being taken away from their family and community. People talk about sad memories of times in institutions. – People talk about the kindness of friends and family. – These stories tell staff that older people want to talk about their past and need help to do this. Doing life-story work will help staff to find out what older people who are in services in Ireland need to make their lives meaningful and comfortable. This article draws on life-stories told by older people with intellectual disabilities for a research study in the Republic of Ireland. Research participants recalled their experiences of confinement, coercion and exclusion that resulted from their being labelled as having intellectual disabilities. Participants also recalled the positive interactions with workers and family members that sustained them during these difficult times. Extracts from these narratives show how past medical and social processes interlinked to classify members of this group as 'deficient' or 'lacking' in some way. Life-stories collected in this project illustrate the value of a narrative approach to exploring how services might begin to enhance the quality of support currently provided to older people with intellectual disabilities. However, life-story work in a service setting is far from straightforward, and support is needed for staff involved in this process.

This paper demonstrates the effectiveness of the multi-element behaviour support (MEBS) model in meeting the rights of persons with intellectual disabilities and behaviours that challenge. It does this through explicitly linking the multi-element model to the guiding principles of a human rights based approach (HRBA) using a vignette to demonstrate the link. The guiding principles of a HRBA are express link to rights, participation, empowerment, nondiscrimination and accountability. The background assessment and functional assessment phase of the MEBS process enables the identification of rights infringements while the MEBS plan addresses those rights. The accountability tool in the MEBS model, which is the periodic service review, is then used as a measure of implementation of the MEBS plan and consequently the enabling of rights. Implications in relation to the rights of those supporting persons in receipt of MEBS and those living with the person receiving MEBS are also highlighted: 'In each situation we confront, a rights based approach requires us to ask: What is the content of the right? Who are the rights claim-holders? Who are the corresponding duty-bearers? Are claim holders and duty bearers able to claim their rights and fulfil them? If not how can we help them to do so? This is the heart of a human rights based approach.' (Robinson 2003:1)

Accessible summary Going online is important because we can learn, meet people and get information. But some actions by others or by ourselves can be harmful. We wanted to find out how people with intellectual disabilities in Spain go online and the problems they have using the Web. We asked 77 adults with intellectual disabilities and 68 caregivers to answer questions about how people with intellectual disabilities use the Web. We found that people with intellectual disabilities prefer smartphones to go online and that they listen to music, watch videos or chat with friends online. We also found out that sometimes they have problems such as receiving insults or being blocked. AbstractBackground Internet offers opportunities to people with intellectual disabilities, but it also involves some risks. The aim of this study was to explore these issues considering caregivers and people with intellectual disabilities’ perspectives. Materials and Methods A descriptive, cross-sectional study was conducted. The sample consisted of 77 adults with intellectual disabilities and 68 caregivers from a Spanish service provider organisation. Results Compared to previous research, findings show an increasing use of electronic devices such as smartphones and the Internet by people with intellectual disabilities. Some online risks (e.g., being insulted, being threatened, someone using their personal information) and undesirable behaviours of this group (e.g., insulting, threatening or flirting with someone who did not want to) were also identified. Differences between the responses of people with intellectual disabilities and their caregivers were found with regard to people with intellectual disabilities’ online behaviour. Conclusions It is important to design, validate and implement strategies to promote risk management and positive risk-taking actions for people with intellectual disabilities.

Accessible summary Siblings often play important roles in the lives of people with intellectual disabilities. This study suggests that young adults who have siblings in residential care can feel isolated in their experience. Adolescence appears to be a turning point and a time when siblings become aware of future caretaking responsibilities. There is a need for support for siblings of children and adults with intellectual disabilities who live in residential care. Abstract Background: Siblings often play significant roles in the lives of people with intellectual disabilities. This study aimed to give voice to young adults whose siblings have an intellectual disability and are in residential care. Materials and Methods: Six participants were interviewed, with interpretative phenomenological analysis methodology employed. Results: Emergent themes included family and sibling relationships and concerns for the future. However, ambivalence, in terms of conflicting feelings within participants themselves, was striking. Dissonances within narratives included identifying as ‘one family’ whilst living apart, experiencing guilt while being supportive of the residential placement, and emphasising the normality of the sibling experience whilst also feeling different and isolated. Conclusion: These findings reflect the particular complexity of sibling relationships when the person with an intellectual disability lives in residential care. There is a need to understand more about the perspectives of siblings, and the influence that residential care may have upon these.

Accessible summary •Self-Directed Support is the latest system of social care giving vulnerable people in the UK a budget instead of a service provided by local authorities. •There is a lack of evidence to demonstrate how people with intellectual disabilities access information and make choices about Self-Directed Support. •Self-Directed Support is not yet available to all individuals with an intellectual disability. •There is a need for further education and training for professionals and support staff to ensure that people who have intellectual disabilities are assisted to make informed choices about care provision. Summary A systematic literature review was conducted between September 2010 and April 2011 and published earlier in this journal, paper 1. The findings indicated that few studies of Self-Directed Support focused specifically on people with intellectual disabilities. The range of individuals' ability and distinction between adults with or without legal capacity have not been addressed. It is clear that Self-Directed Support is not, as yet, a viable option for all individuals with an intellectual disability. However, some who have accessed it reported an improvement in their quality of life. For Self-Directed Support to succeed for people with a wide range of intellectual disabilities, the level of awareness of its existence, and the potential barriers in relation to uptake, must be identified and addressed. This paper suggests possible strategies to maximise access to Self-Directed Support and identifies areas in which further research is required.

Accessible summary We wanted to show how we try to give the voice of persons with learning disabilities. We have used video as the means by which we can collect and show what people with intellectual disabilities say. We learnt • Video is a tool that offers persons with learning difficulties the opportunity to express their experiences. • Video can help make people with intellectual disabilities more visible and can help us listen to what they have to say. Summary Our work, based on two pieces of research, aims to show how we try to get the voice of persons with learning disabilities. In both pieces of work, the second of which is still under progress, we have used video as the means by which we can collect and show what people are saying in the context and situation in which they find themselves. As we seek to defend, the video is a tool that can help make certain people more visible (as well as those with learning disabilities) and can help us listen to what they have to say, broadening our knowledge as to the circumstances in which they find themselves or the kinds of relationships we establish with them.

Accessible summary • Many people want to make sure that all people with intellectual disability are safe from harm. • This report shows that some staff find it hard to say why they feel people with intellectual disabilities need to be protected. • Sometimes care staff feel they can stop people with intellectual disabilities doing the things they want to because the staff are frightened those people may be harmed or hurt. Summary Protection of those deemed vulnerable has received increasing attention since 2000. This article reports on care staff views of vulnerability using original data from a research study (Parley. Vulnerability and abuse: an exploration of views of care staff working with people who have learning disabilities, PhD Thesis, 2007) in which care staff views relating to vulnerability and abuse of adults with learning disability were explored. Using semi-structured interview informants perspectives were explored. The results revealed that most informants felt that people with learning disabilities are all vulnerable and that this definition allows staff the authority to take protective measures to ensure their safety. This desire to introduce protective measures however may result in people with learning disabilities being denied the right to self-determination, thereby limiting their enjoyment of some life experiences and lessening the excitement of life that others take for granted.

Accessible summary • In this study we asked six young people with intellectual disabilities what they thought about becoming independent in their families. • One person wanted more independence within her family and sometimes this caused fights. Three people were happy with the independence they had in their families and did not want things to change. Two people, with the help and support of their families, were trying to be more independent. • Families play an important part in young people becoming more independent. It was important for this group of young people for their families to understand and support their points of view. Summary There is a small but expanding literature about the transition to adulthood for young people with intellectual disabilities. However, voices of young people with intellectual disabilities are under-represented. This study explored the perspectives of young people with intellectual disabilities on their transition to adulthood, focusing particularly on the process of negotiating autonomy within the family. This exploratory study employed a life history approach, involving six young people with mild intellectual disabilities, aged 18–25 years, and two waves of responsive interviews. First interviews explored participants’ life roles, relationships and goals. Second interviews focused on the process of negotiating autonomy within the family. Three approaches to negotiating autonomy within the family were identified: defiant, passive and proactive. The particular approach taken by each participant was associated with the level of congruence between their perceived and desired levels of autonomy and parental support. The study suggests that the transition to adulthood for young people with intellectual disabilities and their parents is not inevitably conflict-ridden. Parents and professionals may support young people with intellectual disabilities through this life stage by including them in family and service decision-making, and by supporting them to take on varied and valued roles and responsibilities within the family and community.

Accessible summary • Two-hundred-and-fifty-six people with intellectual disabilities in Ireland were asked about their lives. What is important to them? Do they get the help they need from staff? • We found that very few people exercised their rights. Very few people choose the work they do. Very few people live, work and have fun in ordinary places. People said they want to choose their own goals. • People want to choose the work they do. People want to take part in their own community. People with severe communication difficulties can be supported to say what is important to them. • This report tells staff about things people want help with. Summary A growing consensus exists regarding Quality of Life measures and their use to support person-centred planning and organisational development. A survey designed to assess current Quality of Life of 256 adults with intellectual disabilities was conducted across a range of 22 service providers in the Republic of Ireland using Personal Outcome Measures (Council on Quality & Leadership 2000). The aim of the survey was to gauge whether organisational processes are in place to support the achievement of personal outcomes of people with intellectual disabilities and to identify people’s unmet priority outcomes. Results reveal that, on average, participants had less than half their personal outcomes fully present at the time of the survey. However, the number of personal outcomes present varied with the severity of the disability. Findings highlight the need to develop more integrated services, to maintain people in their local communities rather than remove them into special settings and develop more reciprocal relationships with communities. The results provide a baseline for Irish services against which to benchmark further progress. Newer models of service such as individualised service design, supported employment and supported living offer this potential.

Accessible summary People with intellectual disabilities can find it hard to understand what behaviours are ok in what situations and with what people. These rules change all the time, and so it is important to be able to work out how to behave for each new situation. If people with intellectual disability behave inappropriately, they may be judged as rude. They may put themselves at risk and be unsafe if they do not understand what information is ok to share with others and how to say no if someone is behaving inappropriately with them. This paper describes a training programme that was developed to help people with intellectual disabilities to work out if a behaviour is ok or not ok. The programme also shows that it is important to think about the person we are with and the place we are in so we can work out if a behaviour is ok or not. Summary This paper outlines a programme Safe and Social that has been implemented with adults with intellectual disability across multiple contexts in a service based in Ireland. The emphasis within the programme is on providing service users and staff with a framework and the necessary language to discuss social behaviours and boundaries, moving away from an emphasis on rules and regulations. The programme draws on visual supports of three nested circles, red indicating ‘not ok’, green indicating ‘ok’ and a central circle that is used to set the topic of discussion. Over a series of seven modules, adults with intellectual disabilities and their support staff are encouraged to collaboratively problem solve some of the behaviours and understandings that can undermine social acceptability and compromise personal safety. Based on positive outcomes over a five-year period, we highlight the need for further research to explore the effectiveness of the programme.

Accessible Summary People who get paid to support people with intellectual disabilities need to understand what is important to people with intellectual disabilities and how to help them get what they want. We asked people with intellectual disabilities and people paid to support them about what is important to people with disabilities and how people with disabilities can get what they want. We learned that: The people with intellectual disabilities whom we talked to knew what they wanted. The support people that we talked to had a hard time figuring out what people with intellectual disabilities wanted and how they could help them get what they wanted. The support people that we talked to said that some of the rules at their jobs made it hard to help people with intellectual disabilities to do what they wanted. Nearly everyone we talked to said that it was important to support people with intellectual disabilities in a caring way. Summary This study from the south-western United States investigated the perceptions of persons with intellectual disability receiving support and of persons providing support regarding the autonomy of people with intellectual disability. The participants included 10 people with intellectual disability and 10 support workers. Through interviews, this qualitative investigation examined issues related to autonomy in support services. Analysis of participant interviews revealed that support workers and people with intellectual disability faced challenges that restricted the promotion of the autonomy of people with intellectual disability. Both groups of participants noted that support workers had to care about their work with individuals with intellectual disability to effectively promote their autonomy.

Accessible summary Many services use carer questionnaires to decide whether people with Down's syndrome are developing dementia. Using one of these questionnaires (the DLD), we looked at how well carers agreed with each other. Only 15% of carers achieved ‘good’ agreement. Carers agreed more with each other when rating people who are less able. This backs up recommendations not to rely only on carer interviews when assessing for dementia. Summary Because of difficulties with neuropsychological assessments for dementia in people with learning disabilities, professionals in clinical practice have relied heavily on carer interviews, one of the most widely used being the Dementia Questionnaire for People with Learning Disabilities (DLD – Evenhuis et al. 2006 Dementia questionnaire for people with intellectual disabilities manual (second edition). Amsterdam, Netherlands, Harcourt Test Publishers). Because dementia is indicated by the magnitude of changes in scores between longitudinal assessments, interinformant agreement is paramount. We carried out the DLD interview independently with two carers for each of 26 people with Down's syndrome. Only 15% of pairs of carers achieved ‘good’ agreement. Levels of agreement varied widely across the DLD subscales and individual questions. Interinformant agreement was better for less able people with Down's syndrome than for more able individuals.

A phenomenological methodology was used to explore the lived experiences of belonging to a self-advocacy group for people with intellectual disabilities. Thirteen persons with intellectual disabilities who attend three self-advocacy day centrebased groups in a city in the west of Ireland were the sample identified for the study. Changes affected by self-advocacy group membership occurred in the day centres the self-advocating participants attended. In addition being a member of a self advocate group was found to enhance the personal lives of the participants. Empowerment occurred for the participants’ both at an individual and collective basis. The evidence produced suggests that opportunities should be provided for adults with an intellectual disability who are not attending day services to join selfadvocacy groups in a community setting as there were clear benefits identified in this study from group membership. A recognition that service providers need to take on board the value that can result from self-advocacy groups was apparent. Theneed to conduct larger scale studies over larger geographical areas and longitudinal research in this area is highlighted.

Accessible summary • Mothers had many different explanations of why their children with intellectual disabilities hurt themselves and often weren’t hopeful that it would stop. • Some of the mothers felt they could sometimes help with their children’s behaviour and this helped with feelings of stress. • Professionals helping people with intellectual disabilities who hurt themselves need to listen more to what their families think and feel. Summary Mothers’ attributions of self injurious behaviour (SIB) in their children with intellectual disability have been largely ignored. However, attributions may predict maternal well-being and engagement in treatment. Thirteen mothers of people who self-injured were recruited. A qualitative design was employed, the data being subjected to thematic analysis according to Braun & Clarke’s (2006) guidelines. Weiner’s (1980) attributional model informed development of semi-structured interviews, to explore the nature and content of their views about SIB. The mothers’ attributions were consistent with dimensions of locus of cause, stability and controllability. They held different, sometimes contradictory views about causes of SIB. Although pessimistic regarding long-term improvement and often uncomfortable with interventions suggested by professionals, some felt able to exercise limited control over their offsprings’ SIB. Control was also linked to stress, and a sense of responsibility when there was inadequate support. Sensitive, effective professional support for individuals engaging in SIB requires collaboration with carers, and understanding carers’ views and feelings.