How do people with intellectual disabilities view abuse and abusers? Journal of Intellectual Disabilities 17(4) 361–375 ª The Author(s) 2013 Reprints and permission: DOI: 10.1177/1744629513509565

Ruth Northway University of South Wales, UK

Melissa Melsome Rhondda Cynon Taff People First, UK

Samantha Flood Rhondda Cynon Taff People First, UK

Davey Bennett Rhondda Cynon Taff People First, UK

Joyce Howarth University of South Wales, UK

Becki Thomas Rhondda Cynon Taff People First, UK

Abstract People with intellectual disabilities have a higher risk of being abused than other people, but to date research has not explored their views regarding abuse. This article reports the findings relating to one question within a participatory research study concerning the abuse of people with intellectual disabilities. This question asked what people with intellectual disabilities’ views are concerning abuse. Data were gathered via individual interviews (n ¼ 14) and focus groups (7 groups involving 47 people in total), which were then analysed via a process of sorting statements into themes followed by group discussion and analysis of these themes. Participants expressed a range of views regarding abuse, some of which revealed strong emotions: a number of participants indicated that abuse could make people feel as though their lives are not worth living. People with intellectual disabilities can discuss their feelings around abuse and recognise the impact this has on their lives.

Corresponding author: Ruth Northway, School of Care Sciences, Faculty of Life Science and Education, University of South Wales, Pontypridd, Wales, CF37 1DL UK. Email: [email protected]

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There is, however, a need for improved responses to disclosures of abuse and the provision of ongoing support to address psychological issues. Keywords abuse, focus groups, interviews, participatory research

Introduction This article reports some of the findings from a 3-year participatory research study that focussed on the abuse of people with intellectual disabilities. The need for this study was identified by people with intellectual disabilities themselves. Three people with intellectual disabilities were employed to work part time on the project as co-researchers and a Research Advisory Group (RAG) of whom more than 50% were men and women with intellectual disabilities provided advice and guidance throughout the project. The questions addressed by the project were: 1. 2. 3. 4.

What do people with intellectual disabilities understand by abuse? What are their views about abuse? What help and support do they need to keep safe? When someone has been abused what are the best ways to keep safe?

This article focuses on question 2, but information regarding the other questions, and more detailed discussion concerning the participatory methods used, can be accessed via the project report (Looking into Abuse Research Team, 2013).

Background Determining the extent to which people with intellectual disabilities are abused is difficult for a number of reasons. Definitions of abuse can differ both within and between countries, methods of recording vary or may be non-existent, and different thresholds may be used to determine what is and isn’t considered to be abuse. In addition, not all abuse is reported by those who are abused and, if they do report, action is not always taken. Nonetheless, work undertaken by the World Health Organization (WHO) suggests that globally both disabled children (Jones et al., 2012) and adults (Hughes et al., 2012) have a greater risk of being abused than do non-disabled peers. An earlier review undertaken by Horner-Johnson and Drum (2006) also came to the same conclusion but, in addition, suggested that people with intellectual disabilities may be at greater risk than other disabled people. Unfortunately, it is not difficult to find examples of such abuse. During the lifetime of the project reported here, an expose´ of ‘care’ at Winterbourne View (a private hospital within England) occurred and extreme physical and emotional abuse of people with intellectual disabilities was found to be occurring. This subsequently led to a serious case review (Flynn, 2012), a government response (Department of Health, 2012) and the trial and imprisonment of a number of staff. There is a danger of course that an example such as this could be dismissed as a consequence of institutionalised patterns of care provision but also within the lifetime of this project, another report was published detailing the experiences of abuse amongst people with intellectual

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disabilities living within community settings (Gravell, 2012). Sixty-seven people were interviewed and the most frequent types of attack experienced were verbal abuse (27%), attacks on property, uninvited entry, burglary or destroying possessions (23%), borrowing or stealing money or being made to buy things (20%) and physical abuse, threats or assaults (18%). An earlier study undertaken by Mencap (1999) had found that two-thirds of the people who participated were bullied at least once a month and just under one-third were bullied on a weekly or daily basis. Some studies have used data that are routinely collected, where there are allegations of abuse to explore the types of abuse committed and the extent of such abuse. Beadle-Brown et al. (2010) analysed the adult protection data from two English local authorities, where one-third of all referrals received related to people with intellectual disabilities. The most commonly reported form of abuse was physical abuse, but sexual abuse was also found to be more prevalent than in other client groups. A similar pattern of abuse had been reported earlier by Cambridge et al. (2006) who found that within one local authority area one-third of adult protection referrals related to people with intellectual disabilities and sexual abuse was reported more frequently than amongst other client groups. However, this study also found that approximately one-third of the referrals relating to people with intellectual disabilities were concerned with multiple forms of abuse with physical and psychological abuse being the most common combination. Whilst acknowledging the limitations of such data, it does provide an indication of the extent of abuse, the types of abuse and other useful information such as settings in which abuse occurs and who the abusers are. However, it does not seek to provide an insight into how people with intellectual disabilities view abuse or their feelings about abuse. Both of these factors have potential significance in terms of supporting people with intellectual disabilities to protect themselves from abuse and, if they are abused, to provide them with appropriate support. Such information is also important since the views that people hold regarding abuse are likely to affect the likelihood of them reporting abuse and, without reporting abuse, support is unlikely to be given. Historically, people with intellectual disabilities have generally been assigned a very passive role in research that has been limited to being subjects of other people’s research (Northway, 2003). Over recent decades, however, there has been growing recognition and acceptance that they are experts in their own lives and experiences (Chappell, 2000), and they have increasingly taken an active role as both participants and sometimes as researchers. Despite such developments, research concerning abuse and people with intellectual disabilities has remained largely focused on the nature and extent of abuse, as previously discussed or on the development of safety courses and the subsequent assessment of skills and knowledge gained (e.g. Khemka et al., 2005; Eastgate et al., 2011; Egemo-Helm et al., 2007). A different approach to providing such education has been developed in Australia, where people with intellectual disabilities play an active role as peer educators in a programme that aims to counter violence and abuse (Frawley et al., 2012). That programme was both developed and delivered by people with intellectual disabilities. Few studies have been undertaken that have specifically discussed abuse with people with intellectual disabilities. This might in part be explained by the fact that people with intellectual disabilities are often viewed as a ‘vulnerable’ group within the context of research (Iacono, 2006; Juritzen et al., 2011) and abuse is deemed to be a ‘sensitive’ subject (McGarry, 2010). Ethical challenges are therefore apparent, but it is important to acknowledge that not undertaking such research also gives rise to ethical issues. For example, failure to research areas such as abuse increases the vulnerability of people since the care and support they receive remains unexplored and unchallenged (Juritzen et al., 2011). A failure to enable the voices of people with intellectual disabilities to be heard about issues such as abuse can also become a further form of oppression and abuse.

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Some researchers have begun to develop research that seeks to hear and understand the experiences of people with intellectual disabilities concerning abuse. For example, Ward et al. (2010) explored interpersonal violence with 47 people with intellectual disabilities. One-third of participants said that they had experienced abuse from one partner and the other two-thirds with multiple partners. Emotional abuse was reported as being the most common form followed by physical abuse. Importantly, however, 24 participants disclosed abuse that had not been reported at the time of occurrence, thus reinforcing the point made earlier regarding non-reporting. Hollomotz (2012) also explored issues relating to violence and abuse through the use of vignettes as a basis for discussion with people with learning disabilities. Half of those who agreed to take part in the study recalled experiences of violence and abuse and some had sought assistance from others to address this. However, it was also noted that sometimes incidents were reported to, but not acted upon by, others. Indeed, some reports were dismissed as overreaction by the individual who felt they had been abused. In the study undertaken by Gravell (2012), participants reported a range of feelings that arose from experiences of abuse. These included being afraid, angry, upset, ashamed and humiliated. They also expressed disappointment and concern that they would be lonely if they lost ‘friends’. Such responses suggest that people with intellectual disabilities experience a range of emotions and feelings as a result of abuse and that they are able to discuss these, if given the opportunity. The study reported here therefore sought to provide such an opportunity by exploring the views that people with intellectual disabilities hold concerning abuse and abusers.

Materials and methods This 3-year study was funded by the Big Lottery and involved a partnership between the University of South Wales, Rhondda Cynon Taff People First (self-advocacy organisation) and New Pathways (an organisation providing post-sexual abuse counselling). People with intellectual disabilities were actively involved at all stages of the project from identifying the research questions, applying for funding, undertaking the research through to disseminating and acting on the findings. At each stage of the process, training was provided to ensure that all of the team had an understanding of what was required and this included both formal teaching sessions and the opportunity to practice skills and apply knowledge. Each of the three co-researchers working on the project had their own personal assistant to support them in undertaking their work.

Data collection The data reported in this article were collected via two methods. Focus groups had been found to be a useful approach to data collection in previous studies involving people with intellectual disabilities (e.g. Barr et al., 2003; Gates and Waight, 2007), although they can exclude those with limited verbal communication (Barr et al., 2003; Cambridge and McCarthy, 2001). Despite this limitation, it was felt that within the context of this study they would provide the opportunity for differing views to be explored in a way that would not be possible using individual interviews alone. The group nature of such a discussion does, however, give rise to particular ethical concerns arising from the nature of the subject being explored both in terms of confidentiality and in relation to the impact upon participants. Each focus group therefore involved introductions, consent, and setting ground rules before moving into large and small group discussion, closing discussion and reminders regarding availability of support. A focus group schedule was used to structure discussion and to assist participants in focusing on issues photographs and objects of reference were

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used. Seven focus groups were held, each facilitated by a co-researcher and research assistant. Six of the focus groups were digitally recorded; but in the seventh, one participant indicated that he did not wish the recorder to be used. In this instance, key points of the discussion were noted and included in the analysis. Individual interviews were also held and these were conducted by one of the co-researchers and another member of the research team. It was felt that the inclusion of individual interviews as well as focus groups would be useful since they would provide an opportunity for participants to discuss issues in a more private setting. Those participants who were interviewed also took part in the focus groups but within the context of the interview the questions were approached in a different way and other areas were explored. As with the focus group, consent was sought at the beginning of the interview and then an interview schedule was used to structure the discussion. In addition, some photographs were also used to support the discussion. At the end of the interview, participants were reminded about the availability of support and help to access this support was offered, if appropriate. All of the interviews were digitally recorded for later transcription. Both the focus groups and the interviews were piloted with people with intellectual disabilities from elsewhere in the UK. Some minor amendments were made as a result of feedback from participants and also as a result of the research team reflecting on their experience of this pilot. One aspect of this project that was particularly innovative was that both the interviews and the focus groups were conducted during a 3-day residential event held in a hotel. The rationale for this was that it was felt important that participants should not be asked to discuss abuse and then just left alone at the end of the interview or focus group without support. Having a residential event meant that general support and specialist counselling services could be available on-site. Between data collection activities, a programme of activities was arranged for participants so that they had the opportunity to relax between sessions that could be quite challenging.

Participants Participants in this study were recruited via People First Advocacy Groups and other organisations of people with intellectual disabilities. No specific inclusion criteria were provided for the People First Groups other than the fact that participants should be over the age of 18. Information packs containing information leaflets about both the residential event and the research were sent out, and people were asked to express an interest in attending and taking part. Forty-seven people with intellectual disabilities took part in 1 of 7 focus groups ; and of this group, 14 also participated in individual interviews. In all, 19 of these participants were women and 27 were men (1 person did not indicate gender on the form). Ages ranged from 18 to 65, with men outnumbering women 2:1 in the under 45 age group, but women slightly outnumbering men 9:7 in the 46 and above age range. Within the participant group, differences were also evident in terms of ethnic background, additional physical impairments and living arrangements (some living independently, some with partners, some with family and some in supported living settings). Formal assessments of the degree of intellectual disability were not undertaken, but the nature of the data collection methods used meant that participants would probably be considered to have either mild or moderate intellectual disabilities.

Data analysis Prior to undertaking data analysis, training sessions were provided to ensure that all the team understood what was required and how we might achieve it. To assist with understanding, the

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analogy of completing a jigsaw puzzle in which you first sort the pieces according to shape and colour before trying to put them together to reveal the picture was used. In the same way, data analysis requires us to sort the information we have and then to look for how it fits together to give us a picture of what people have said. The focus groups and the interviews were analysed separately initially with a two-stage process being followed. First, one of the co-researchers (supported by their personal assistant) took responsibility for one data set and sorted it so that responses to questions across the interviews or focus groups were brought together. They also highlighted any issues they thought were particularly important. Another member of the research team (R.N.) then reviewed the sorted data and noted the key themes. These themes were then transferred on to a PowerPoint presentation that was shared with the group. A further level of analysis therefore took place as the implications of what we had learnt were discussed. As the key themes were identified in the presentation, they were supplemented by R.N. providing examples of what participants had actually said from the transcripts. At this stage, the benefits of participatory research were particularly evident as the co-researchers were able to relate the comments made by participants to the lived reality of having an intellectual disability: a level of understanding that other members of the research team did not possess.

Ethics Approval to undertake this study was obtained from the Faculty of Health, Sport and Science Ethics Committee at the University of South Wales. As has already been noted, both the subject of the research and the fact that people with intellectual disabilities are considered to be a ‘vulnerable’ group in research meant that potential ethical issues needed to be identified, carefully considered and appropriate strategies put in place. Ensuring valid consent was one such issue and here information for potential participants was developed in an easy read format and was reviewed by people with intellectual disabilities who were members of the Research Advisory Group before submission to the ethics committee. Information was also produced in DVD format for participants who preferred this means of gaining information. This information was sent out to People First groups and consent to attend the residential was sought from interested group members. Consent was also viewed as a process rather than an event and hence continued consent was checked at regular intervals during the residential and the right to stop/ withdraw at any stage was stressed with participants being provided with a ‘stop card’ that they could just hold up rather than having to verbally state that they wished to stop. When discussing sensitive topics, it is important that confidentiality is assured but in this instance we had a responsibility to act if anyone disclosed abuse that had not been previously investigated. The information provided for participants thus made it clear that we would keep information confidential except if they told us that they or someone else was being hurt. If this occurred then we stated that we would have to report it, but that we would only do so having discussed it with the participant. A further issue was that discussing abuse could obviously be traumatic and hence, in addition to gathering data in the context of a residential event, we had counsellors available at all times and participants were regularly reminded of this facility.

Findings This study did not ask participants about their experiences of abuse, and we stressed that we were not enquiring about personal experiences. However, it soon became apparent that abuse is a

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common feature in the lives of people with intellectual disabilities and therefore it is a personal issue. A number of participants did, therefore, discuss their personal experiences and it is important to note that where abuse had not previously been disclosed, this was acted upon in keeping with the protection of vulnerable adults policy. In addition, full use was made of the counselling service and in some instances this has led to the provision of ongoing support. Within the following sections, quotes are identified either by the number of the focus group (FG) within which the comments were made (e.g. FG1) or by a pseudonym given to each of the interview participants.

Severity of abuse Within the focus groups participants were asked to consider whether they felt one form of abuse was worse than another. Not everyone felt able to answer this question but those who did raised some important issues and also provided a rationale for their response. The form of abuse most commonly viewed as being the ‘worst’ was sexual abuse: I was thinking about sexual abuse, ‘cos they might feel dirty inside or they might be afraid to tell somebody that they, that it’s happened and they’re just too afraid to speak out. (FG6) Sexual . . . because you can be forced into sex and you could turn out and have a baby or something and then it’s not your fault because you don’t want it anyway. (FG7) I think rape is worst to me. (FG4) Another participant, however, provided their rationale for why emotional abuse is the worst: I’d say emotional abuse is worse than any of them because you’re showing, you’re hiding signs away in your head and you’re not sharing them and that to me seems . . . really, really, hard. (FG5)

This participant obviously feels that emotional abuse is something that is difficult to share with other people but also recognises that not sharing is also problematic. Perhaps the differing responses, as well as the difficulties participants experienced in answering this question, are partially explained by the response of another participant who said: Well, that depends on the individual because what can be abuse to you might not be abuse to me. (FG4)

This very insightful observation highlights the subjective dimension of abuse in that an individual may not feel they are being abused yet (according to a policy definition) they are. This could, for example, be due to low self-esteem and/or that abuse is just a ‘normal’ part of life. However, it also raises a further possibility namely that according to official definitions, an individual may not be considered to be abused and yet they feel abused, which can nonetheless impact negatively upon their well-being.

Emotions and feelings Some participants indicated that they had strong views and feelings about abuse but the strength of these feelings could make it difficult to find the right words: Well, err, I’ve tried words and I just get Grraa! (FG5)

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Others however identified a range of emotions. These included feeling anger, fear, bitter, disgust, upset and paranoid. Being abused over a period of time could cause such emotions to build up to a point at which they could no longer be contained: One day it got too much. One day he was on his own and he come after me, and I just, I swinged round and I kicked him, kicked his, kicked him, and that’s it then. (FG2) I had to defend myself. I beat him up completely. Tell him he was wrong for touching me. (different participant in FG2)

One danger in such a situation is that the person with a learning disability finds themselves committing an offence and/or being labelled as having ‘challenging behaviour’ when their response is understandable (although not acceptable) given the circumstances. They become viewed as the ‘problem’, whilst the initial perpetrator avoids censure. In both the interviews and the focus groups, participants suggested that abuse can make you feel embarrassed which perhaps partially explains why abuse can go unreported: people who are abused may simply be too embarrassed to tell anyone. In addition, in common with others who are abused people with intellectual disabilities may feel that they are to blame for the abuse: . . . I went through domestic violence and it was my own fault . . . . (FG2)

In relation to the comment above, it is interesting to note that the participant, even when encouraged by the focus group facilitator to not accept blame for this abuse, restates that it is her fault. In his interview, Sean discussed not only the fact that abuse should not happen but also why this is the case. Nonetheless, he expressed a sense of resignation and powerlessness to effect change: I just feel it shouldn’t happen, but it does. And there’s nothing you can actually do about it, it just happens . . . makes me feel angry, it’s such against, it’s actually abusing your human rights basically, and we all have human rights. (Sean)

For some participants, there was a sense of incredulity that one person could treat another in such a way and that abuse can occur. The data collection for this study took place approximately 6 months after the television expose of abuse at Winterbourne View, and some participants had seen this programme. One person commented about it: It broke my heart watching that, I cried (number of murmurs amongst group members), cos I couldn’t understand why in God’s name didn’t anyone find out. That’s what made me really, made me angry. (FG2)

In another focus group a participant spoke of their feelings about abuse: It’s wrong, cos it’s wrong because you’re not abusing someone else and you’re not doing no wrong at all and somebody comes and starts abusing you, well why? (FG7)

Disbelief is mixed with a sense of injustice: as a participant in FG 4 observes ‘it’s not fair’. Some participants discussed how they had tried to develop strategies for dealing with the impact of abuse, but their effectiveness may be limited. For example one said: . . . I’ve just blanked it out of my mind, but it’s still in there. (FG5)

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Indeed the following comments from participants reflect both the intensity and the (sometimes) enduring effects of abuse: Like a headache, you just can’t get it out of your head. (FG6) I feel like I had been turned inside out and gone through the mangle. (Elliot) You can get nightmares when people abuse you. Nightmares about it. I always have nightmares when people abuse me and take advantage. (FG6)

Perhaps the most worrying statements to emerge from both interviews and focus groups, however, were those that indicated how abuse can lead to self-harm and suicidal feelings: . . . it’s well not very nice. It makes you feel – sometimes it makes you feel, it’s like is life worth living for? (Gareth) Well I feel it’s such a terrible thing for anybody to go through. Sometimes people who get abused continuously feel like taking their own lives. (Ajit) Somebody could, when somebody pushes them too much they could harm themselves. (FG4) . . . is life worth living sometimes? People you know could do away with themselves. You may think this, you may have this idea, but would you carry it out? (FG6) She might take her own life cos she might get fed up with it and think that there’s only one way of doing it. (FG7)

The number of comments here, made by different participants, suggests that such feelings are not an uncommon response particularly where the abuse is happening ‘continuously’. They convey a sense of hopelessness and a sense that a positive future cannot be seen. One participant in a focus group disclosed that they knew someone who had committed suicide in such circumstances.

What should happen to abusers? The sense of injustice voiced by some participants was noted above. In the individual interviews, participants were asked what they thought could happen to people who abuse people with intellectual disabilities and also what they would like to happen. Some comments relating to this issue were also made in the focus groups. Ajit suggested that responses to abuse and abusers may be unpredictable and that sometimes nothing happens: They get off free don’t they? They get away with it. Sometimes they get away with it sometimes they get caught. (Ajit)

This might, in part, be due to people with intellectual disabilities not reporting abuse since as Joanna observed in her interview you have to have ‘guts’ to go to the police to report. Underreporting might, however, also be due to the perception that even where people are tried and punished the punishments may not fit the crime: But when some people say for good, they only do two years. I reckon when they say for life it should be for life. (FG7)

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Nonetheless, despite these concerns regarding inadequate punishments, Elliot observed that more people are seeking to prosecute people for committing abuse these days and that more people are being punished. He added ‘and let’s keep it that way’. The effectiveness of policy and legislation to prevent abuse and to effect justice where abuse occurs was discussed as demonstrated in an exchange between participants in FG5. This follows some discussion as to whether things are better than they used to be: . . . even though the law says people shouldn’t do those things to one another, but people still do those things. It still goes on, I’m not saying that things are better, I’m saying that things are in place to make things better.

In this exchange, a subtle distinction is made between having policies and laws in place that have the potential to improve the situation, and such policies and legislation actually having a positive impact on people’s lives. Some participants in the interviews suggested that it was also important to educate as well as punish those who commit abuse, and Ceryn said that she felt people should have to go on a course about abuse to see how it affects people. Others expressed similar views: I want them to understand how they feel about it. And why do you want to do it ‘cos it’s not fair. (Wanda) I think they should see how we are treated and see how they feel. (Joanna)

The importance of treating people as you would wish to be treated was also evident: I think you should treat people the way you want to be treated. So if you don’t want to be abused, don’t abuse other people. (FG7)

Whilst such sentiments may often be expressed amongst the wider population, there may be particular implications in relation to the situation of people with an intellectual disability that will be discussed below. Understandably particular views were expressed about care workers who commit abuse: If they do something like that they shouldn’t be in the job. (Afan) But if it came to a carer their job should be taken away, they’re not suitable to do their job. (Gareth) If they’re taken to court and they’re found guilty, they won’t be allowed to abuse people again. They wouldn’t be allowed to work again. (Sean)

A link is thus made between a care worker committing abuse and their future options for employment. However, perhaps Sean’s view that being found guilty will stop them committing further abuse is optimistic.

Discussion Although participants initially found it difficult to identify what they felt to be the worst form of abuse some subsequently offered a response. Sexual abuse was identified as the worst form by a

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number of people, which is interesting given that a high level of sexual abuse of people with intellectual disabilities has been noted in some studies (Beadle-Brown et al., 2010; Brown et al., 1995; Cambridge et al., 2006). Furthermore, in another study, in over half of the referrals for alleged sexual abuse the perpetrator was another service user (Cambridge et al., 2011). It may, therefore, be that perceptions of severity are linked to the frequency of occurrence. It is interesting to note, however, that another participant suggests that there is a subjective element in determining whether something is considered to be abuse and the severity of that abuse. In the context of service provision this is an important consideration since if an individual feels they have been abused but the incident is not viewed in the same way by supporters then no action may be taken either to investigate or to provide emotional support. Similarly, if an individual with learning disabilities lacks awareness of their right to be safe, they may consider abuse to be an everyday part of life and not report it to anyone. This further strengthens the argument that reported abuse is only likely to be a percentage of actual abuse. Some participants spoke of the difficulties they experienced in controlling their own responses to abuse and that sometimes this was not possible to do. The effect was that they then hit out at their abusers and run the risk of facing sanctions themselves. It is interesting to note, therefore, that when the histories of offenders with intellectual disabilities are examined, a high incidence of abuse is seen (e.g. Hayes, 2009; Lindsay et al., 2004; Lindsay et al., 2012). It is not possible from this evidence to draw any conclusions regarding a causative relationship but further research may be helpful. Moreover, it would seem that a proactive strategy of stopping abuse may be required if a negative trajectory of behaviour is not to occur. People with intellectual disabilities may develop strategies to manage their own feelings in response to abuse, but these strategies are not always effective. Given that abuse is not always disclosed (Ward et al., 2010), that people may not be believed (Hollomotz, 2012), and that disclosures may not be acted on quickly (Joyce, 2003) individuals may have to try and contain their feelings for a long time. However, if psychological issues are not addressed early following abuse, long-term chronic symptoms may become established (Sequeira, 2006). The need for ‘safe’ routes for disclosure and greater awareness of indicators of abuse are thus required in order to facilitate earlier intervention and support. The importance of this is reinforced by the comments participants made when asked how they feel about abuse. Historically, people with intellectual disabilities have not been considered capable of providing reliable descriptions of their feelings and experiences, and yet these comments provide a very vivid sense of just how great a psychological impact abuse can have on an individual. They also provide an indication of how the effects can become an enduring and significant feature of people’s lives. For example, one participant speaks of how he experiences nightmares: nightmares are recognised as symptom of posttraumatic stress disorder related to abuse (Stenfert Kroese and Thomas, 2006). However, psychological support for people with intellectual disabilities post abuse may be limited despite recognition that it should be offered as soon as possible to prevent adverse effects becoming long-term conditions (Sequeira, 2006; Smiley et al., 2007). A few participants spoke about how abuse can make people feel like harming themselves or committing suicide. Literature concerning suicide and people with intellectual disabilities is limited, but Merrick et al. (2006) reviewed existing research and found a history of abuse to be a risk factor for suicide amongst this group of people. Elsewhere studies have found abuse and neglect to be factors that contribute to mental health problems in people with intellectual disabilities (e.g. Smiley et al., 2007; Taggart et al., 2010). Also Rowsell et al. (2012) found that

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whilst psychological distress following abuse reduced over time some psychological difficulties remained. These examples relate to cases of abuse that have been disclosed and yet some people with intellectual disabilities do not make such disclosures (Ward et al., 2010) and others who try to do this are not always taken seriously (Hollomotz et al., 2012). It may thus be that a number of people with intellectual disabilities are coping with such psychological issues without any support and without any recognition of their cause. Further research is therefore needed to better understand the relationship between abuse and mental health problems, self-harm and suicide amongst people with intellectual disabilities. Also research concerning barriers to disclosure is required to include how those supporting people with intellectual disabilities can best understand behavioural changes as potential ‘disclosures’ of abuse. If abuse is identified, then appropriate support should be available. Unfortunately, however, an inverse relationship has been observed between rates of abuse and access to support for people with intellectual disabilities: despite experiencing higher rates of abuse they have more limited access to treatment and support (Razza et al., 2011). Further development of appropriate supports is therefore indicated. Some participants indicated that people should treat others as they would wish to be treated themselves. Whilst this may in most circumstances be a positive basis for daily living, it also needs to be remembered that some studies have found that the largest group of abusers of people with intellectual disabilities are other service users (Cambridge et al., 2006, 2011). Such abusers may themselves have been subjected to abuse, may experience low self-esteem as a consequence of abuse (Peckham et al., 2006), and may therefore see being treated in an abusive manner as ‘normal’ and/ or acceptable. This highlights the complexity of abuse and the importance of multifaceted strategies relating to prevention, protection and survivorship.

Limitations Within this study, a definition of abuse was not provided for participants and this may be viewed as a limitation. However, the aim was to explore their understandings rather than imposing an external definition. Abuse has both objective and subjective dimensions, and it is important to understand what people view as abuse as well as what policy dictates is abuse. It is also recognised that the nature of data collection in this study meant that the participants tended to be those with mild and moderate intellectual disabilities: people with more severe disabilities did not participate. This is a limitation since they may both experience and abuse and face additional challenges in communicating this. However, it was beyond the capacity of this project to facilitate their participation although the importance of achieving this in future research is acknowledged. Using both focus groups and interviews gave a greater breadth of information than would have been achieved using one method alone. However, undertaking all of the focus groups and interviews within the context of a 3-day residential event was very tiring for the research team. Were a similar study to be conducted in the future, consideration should be given to including a larger team to gather the data so that the workload can be shared more widely.

Conclusions Historically, people with intellectual disabilities have not always been asked about their views and feelings but from this study it can be concluded that if they are asked they can provide meaningful accounts that can promote better understanding of their experiences and promote the development

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of more responsive services. Understandably strong views were expressed regarding abuse but what was striking was the continuing negative psychological impact abuse can have on individuals. Wider literature suggests, however, that appropriate therapeutic support is not always available in a timely manner and therefore the extent of such provision and the effectiveness of its impact are therefore areas that should be priorities for future research. The complex nature of abuse and the fact that victims may become abusers also adds weight to the argument for further investment in preventative interventions. People with intellectual disabilities are aware that legal and policy provisions should provide justice for victims but also recognise that justice is not always achieved. However, they also identify other strategies that may be useful such as helping abusers to understand the impact of their behaviour on their victims. This may be an approach worthy of further development since it may serve to alter the balance of power in favour of those who have been abused and enable them to ‘take control’. Services need, therefore, to:  ensure that where people with learning disabilities disclose abuse they are listened to, believed and appropriate action is taken;  ensure that staff are aware of how behavioural changes can be an indication of abuse;  ensure that psychological support is available in a timely manner for people with learning disabilities who are abused;  evaluate the impact of post abuse psychological interventions on the psychological and behavioural well-being of people with learning disabilities;  explore ways of involving people with learning disabilities in developing programmes to make perpetrators of abuse aware of the impact of their behaviour. Funding The study was funded by the Big Lottery Fund.

References Barr O, McConkey R and McConaghie J (2003) Views of people with learning difficulties about current and future accommodation: the use of focus groups to promote discussion. Disability and Society 18(5): 577–597. Beadle-Brown J, Mansell J, Cambridge P, Milne A and Whelton B (2010) Adult protection of people with intellectual disabilities: incidence, nature and responses. Journal of Applied Research in Intellectual Disabilities 23: 573–584. Brown H, Stein J and Turk V (1995) The sexual abuse of adults with learning disabilities: report of a second two-year incidence survey. Mental Handicap Research 8(1): 3–24. Cambridge P and McCarthy M (2001) User focus groups and best value in services for people with learning disabilities. Health and Social Care in the Community 9: 476–489. Cambridge P, Beadle-Brown J, Milne A, Mansell J and Whelton B (2006) Exploring the incidence, risk factors, nature and monitoring of adult protection alerts. University of Kent, Canterbury: Tizard Centre. Cambridge P, Beadle-Brown J, Milne A, Mansell J and Whelton B (2011) Patterns of risk in adult protection referrals for sexual abuse and people with intellectual disability. Journal of Applied Research in Intellectual Disabilities 24: 118–132. Chappell AL (2000) Emergence of participatory methodology in learning difficulties research: understanding the context. British Journal of Learning Disabilities 28(1): 38–43. Department of Health (2012) Transforming Care: A national response to the Winterbourne View Hospital: Department of Health Review Final Report. London, UK: Department of Health.

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Journal of Intellectual Disabilities 17(4)

Eastgate G, Van Driel ML, Lennox N and Scheermeyer E (2011) Women with intellectual disabilities. A study of sexuality, sexual abuse and protection skills. Australian Family Physician 40(4): 226–230. Egemo-Helm KR, Miltenberger RG, Knudson P, Finstrom N, Jostad C and Johnson B (2007) An evaluation of in situ training to teach sexual abuse prevention skills to women with mental retardation. Behavioural Interventions 22: 99–119. Flynn M (2012) Winterbourne View Hospital. A Serious Case Review. Gloucestershire, UK: South Gloucestershire Council. Frawley P, Barrett C and Dyson S (2012) Real people: Core Business. Living Safer Sexual Lives: Respectful Relationships. Report on the Development and Implementation of a Peer Led Violence and Abuse Prevention Program for People with Intellectual Disabilities. Melbourne, Australia: Australian Research Centre in Sex, Health and Society, La Trobe University. Gates B and Waight M (2007) Reflections on conducting focus groups with people with learning disabilities: theoretical and practical issues. Journal of Research in Nursing 12(2): 111–126. Gravell C (2012) Loneliness þ Cruelty. People with Learning Disabilities and Their Experience of Harassment, Abuse, and Related Crime in the Community. London, UK: Lemos and Crane. Hayes S (2009) The relationship between childhood abuse, psychological symptoms and subsequent sex offending. Journal of Applied Research in Intellectual Disabilities 22: 96–101. Hollomotz A (2012) ‘A lad tried to get hold of my boobs, so I kicked him’: an examination of attempts by adults with learning difficulties to initiate their own safeguarding. Disability and Society 27(1): 117–129. Horner-Johnson W and Drum CE (2006) Prevalence of maltreatment of people with intellectual disabilities: a review of recently published research. Mental Retardation and Developmental Disabilities Research Reviews 12: 57–69. Hughes K, Bellis MA, Jones L, Wood S, Bates G, Eckley L, et al. (2012) Prevalence and risk of violence against adults with disabilities: a systematic review and meta-analysis of observational studies. The Lancet 379: 1621–1629. Iacono T (2006) Ethical challenges and complexities of including people with intellectual disability as participants in research. Journal of Intellectual and Developmental Disability 31(3): 173–179. Jones L, Bellis MA, Wood S, Hughes K, McCoy E, Eckley L, et al. (2012) Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies. The Lancet 380: 899–907. Joyce TA (2003) An audit of investigations into allegations of abuse involving adults with intellectual disability. Journal of Intellectual Disability Research 47(8): 606–616. Juritzen TI, Grimen H and Heggen K (2011) Protecting vulnerable research participants: a Foucault-inspired analysis of ethics committees. Nursing Ethics 18(5): 640–650. Khemka I, Hickson L and Reynolds G (2005) Evaluation of a decision-making curriculum designed to empower women with mental retardation to resist abuse. American Journal on Mental Retardation 110(3): 193–204. Lindsay W, Steptoe L and Haut F (2012) The sexual and physical abuse histories of offenders with intellectual disability. Journal of Intellectual Disability Research 56(3): 326–331. Lindsay WR, Smith AHW, Quinn K, Anderson A, Smith A, Allan R, et al. (2004) Women with intellectual disability who have offended: characteristics and outcome. Journal of Intellectual Disability Research 48(6): 580–590. Looking into Abuse Research Team (2013) Looking into Abuse: Research by People with Learning Disabilities. Pontypridd, UK: University of Glamorgan. McGarry J (2010) Exploring the effect of conducting sensitive research. Nurse Researcher 18(1): 8–14. Mencap (1999) Living in Fear. London, UK: Mencap. Merrick J, Merrick E, Lunsky Y and Kandel I (2006) A review of suicidality in persons with intellectual disability. The Israel Journal of Psychiatry and Related Sciences 43(4): 258–264. Northway R (2003) Participatory research. In Jukes M and Bollard M (eds) Contemporary Learning Disability Practice. Salisbury, UK: Quay Books, pp. 165–174.

Downloaded from at UNIV ARIZONA LIBRARY on June 6, 2015

Northway et al.


Peckham NG, Howlett S and Corbett A (2006) Evaluating a survivors group pilot for women with significant intellectual disabilities who have been sexually abused. Journal of Applied Research in Intellectual Disabilities 20: 308–322. Razza NJ, Tomasulo DJ and Sobsey D (2011) Group psychotherapy for trauma-related disorders in people with intellectual disabilities. Advances in Mental Health and Intellectual Disabilities 5(5): 40–45. Rowsell WL, Clare ICH and Murphy G (2012) The psychological impact of abuse on men and women with severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 26: 257–270. Sequeira H (2006) Implications for practice: research into the effects of sexual abuse on adults with intellectual disabilities. Journal of Adult Protection 8(4): 25–31. Smiley E, Cooper SA, Finlayson J, Jackson A, Allan L, Mantry D, et al. (2007) Incidence and predictors of mental ill-health in adults with intellectual disabilities. British Journal of Psychiatry 191: 313–319. Stenfert Kroese B and Thomas G (2006) Treating chronic nightmares of sexual assault survivors with an intellectual disability: two descriptive case studies. Journal of Applied Research in Intellectual Disabilities 19: 75–80. Taggart L, McMillan R and Lawson A (2010) Staffs’ knowledge and perceptions of working with women with intellectual disabilities and mental health problems. Journal of Intellectual Disability Research 54(1): 90–100. Ward KM, Bosek RL and Trimble EL (2010) Romantic relationships and interpersonal violence among adults with developmental disabilities. Intellectual and Developmental Disabilities 48(2): 89–98.

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How do people with intellectual disabilities view abuse and abusers?

People with intellectual disabilities have a higher risk of being abused than other people, but to date research has not explored their views regardin...
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