Purpose The COVID-19 pandemic meant that it became impossible for many individuals with intellect... more Purpose The COVID-19 pandemic meant that it became impossible for many individuals with intellectual disability to access specialist mental health support. The purpose of this study was to evaluate a set of guided self-help resources adapted for delivery on an outreach basis. Design/methodology/approach The use and impact of the resources were evaluated through: data about downloads and requests for printed materials; interviews with individuals who used the resources; webinars with organisations; family members and support workers who had delivered the resources and an online survey with individuals who had delivered the resources. Findings The resources had considerable reach, with over 12,555 printed copies requested from across Scotland. The materials were perceived to be relevant and useful, helping individuals to talk about difficulties and to be aware that others were facing similar challenges. Originality/value The findings highlight the potential long-term value of guided s...
BackgroundNo previous studies have reported predictors and moderators of outcome of psychological... more BackgroundNo previous studies have reported predictors and moderators of outcome of psychological therapies for depression experienced by adults with intellectual disabilities (IDs). We investigated baseline variables as outcome predictors and moderators based on a randomised controlled trial where behavioural activation was compared with guided self‐help.MethodsThis study was an exploratory secondary data analysis of data collected during a randomised clinical trial. Participants (n = 161) were randomised to behavioural activation or guided self‐help and followed up for 12 months. Pre‐treatment variables were included if they have previously been shown to be associated with an increased risk of having depression in adults with IDs or have been reported as a potential predictor or moderator of outcome of treatment for depression with psychological therapies. The primary outcome measure, the Glasgow Depression Scale for Adults with Learning Disabilities (GDS‐LD), was used as the depe...
Background Parents of children with intellectual disability are 1.5–2 times more likely than othe... more Background Parents of children with intellectual disability are 1.5–2 times more likely than other parents to report mental health difficulties. There is a lack of clinically effective and cost-effective group well-being interventions designed for family carers of young children with intellectual disability. Aim To examine the feasibility of a randomised controlled trial of the clinical effectiveness and cost-effectiveness of the Early Positive Approaches to Support (E-PAtS) intervention. Design A feasibility study (including randomisation of families into a two-arm trial), questionnaires to assess the feasibility of proposed outcome measures (including resource use and health-related quality of life) and practitioner/family carer interviews. An additional question was included in an online UK survey of families, conducted by the research team to assess usual practice, and a survey of provider organisations. Setting Families recruited from community contexts (i.e. third sector, loca...
The tacit practical knowledge of psychologists and support staff to foster a real connection betw... more The tacit practical knowledge of psychologists and support staff to foster a real connection between support staff and people with intellectual disabilities and challenging behaviour was explored. Therefore, six dyads comprising individuals with intellectual disabilities and challenging behaviour and their support staff were video recorded during joint engagement in an activity. To tap into the implicit knowledge of professionals about when staff have ‘a real connection’ with a person with an intellectual disability, 10 psychologists and 10 support staff were asked to pinpoint these moments in the pre-recorded video compilation. They also shared their interpretations about what they considered to be a real connection. The results displayed that participants designated real connections as occurring when they noticed concrete interactions taking place. Based on thematic analysis of the data, four themes were identified that encapsulated what professionals deemed to be a real connectio...
BackgroundDuring the Covid‐19 pandemic, there has been a worldwide increase in the use of digital... more BackgroundDuring the Covid‐19 pandemic, there has been a worldwide increase in the use of digital technology. Many people with learning disabilities have learned new digital skills, taken part in online activities, and kept in touch with family and friends using video calls. However, the experiences of digital participation or nonparticipation for the people with profound and multiple learning disabilities (PMLD) is less understood.MethodBetween December 2020 and August 2021, family carers or paid support workers of adults with PMLD completed an online survey around the experiences of the person they care for during the Covid‐19 pandemic, including questions on Internet use. We draw on the findings of this UK‐wide study to explore the digital participation of the people with PMLD during the pandemic.FindingsAround half of the people with PMLD had Internet access at home. Around half of the participants interacted with others on video calls like Facetime or Zoom and most commonly use...
Having a disability, in particular, an intellectual disability, is associated with Internet non-u... more Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being.
Journal of Applied Research in Intellectual Disabilities
BackgroundPeople with intellectual disabilities are at risk of experiencing stigma and require th... more BackgroundPeople with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives.MethodDevelopment and piloting of a 5‐session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage and resist stigma. Ten pre‐existing groups (N = 67) in third sector and education settings participated. Interviews with participants (n = 26), facilitators (n = 9) and significant others (n = 7) 2–4 months after the intervention assessed perceived impact.ResultsPerceived benefits of the intervention for participants included increased understanding, improved connections with others, drive for advocacy, increased activity and self‐efficacy, and opportunity to process difficult events and emotions. Differential impact depending on individuals' pre‐existing self‐advocacy skills was noted.ConclusionsThis early‐stage study indicates that furthe...
Background: Parents of children with intellectual disabilities are likely to experience poorer me... more Background: Parents of children with intellectual disabilities are likely to experience poorer mental well-being and face challenges accessing support. Early Positive Approaches to Support (E-PAtS) is a group-based programme, co-produced with parents and professionals, based on existing research evidence and a developmental systems approach to support parental mental well-being. The aim of this study was to assess the feasibility of community service provider organisations delivering E-PAtS to parents/family caregivers of young children with intellectual disability, to inform a potential definitive randomised controlled trial of the effectiveness and cost-effectiveness of E-PAtS.Methods: This study was a feasibility cluster randomised controlled trial, with embedded process evaluation. Up to two parents/family caregivers of a child (18 months to <6 years old) with intellectual disability were recruited at research sites and allocated to intervention (E-PAtS and usual practise) or...
Journal of Policy and Practice in Intellectual Disabilities, 2022
Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to ... more Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to experience mental health difficulties and face barriers obtaining mental health care. COVID‐related public health restrictions, combined with heightened challenges to obtain timely mental health care, have served to worsen this situation internationally, with a combination of new onset conditions and worsening mental health for those already struggling. In this narrative review, we summarize literature on the mental health of adults with ID during the COVID‐19 pandemic to describe what is known based on clinician perceptions, existing administrative health data, family and staff perceptions, and self‐report. In addition to noting similarities and differences in findings based on the source of information, we also explored how experiences differed depending on where and when the research was conducted. Based primarily on research conducted during the first six months of the pandemic, ther...
Journal of Applied Research in Intellectual Disabilities, 2021
BackgroundSocial inclusion has been explored using a wide range of theories and methods. Belongin... more BackgroundSocial inclusion has been explored using a wide range of theories and methods. Belonging and reciprocity have been identified as key components of social inclusion. This systematic methodological review identifies and evaluates the theoretical frameworks and qualitative approaches adopted to explore belonging and reciprocity in the lives of adults with intellectual disabilities.MethodA systematic search was conducted across ten databases. Screening and quality appraisal were carried out independently by two researchers, and data were extracted to provide detailed accounts of the theories and methods employed.ResultsSeventeen papers met inclusion criteria. Clear conceptualisations of belonging and reciprocity were lacking, and these concepts were rarely the focus of the research. Theoretical and methodological shortcomings across this literature were identified and discussed.ConclusionsMore nuanced conceptualisations of belonging and reciprocity may be helpful in future res...
When working with people with ID, there are a number of other people who we may need to be in con... more When working with people with ID, there are a number of other people who we may need to be in contact with, not just to gather background information but also to recruit them as allies who can play an influential and long-term role in implementing and maintaining psychological and environmental change. We need to carefully consider when it is and when it is not suitable to involve other people so that we respect the client’s right to confidentiality. We may need to spend time with caregivers and staff to make sure that they understand and agree with the CBT model and the formulation. As therapists we must also liaise with our health and social services colleagues and ensure that the various interventions received by clients are well coordinated and are not detrimental to each other. Family carers and support workers as well as health and social services professionals can complement the CBT approach and improve the chances of significant and enduring improvements in psychological wel...
BackgroundGiven the much greater COVID‐19 mortality risk experienced by people with intellectual ... more BackgroundGiven the much greater COVID‐19 mortality risk experienced by people with intellectual disabilities (ID), understanding the willingness of people with ID to take a COVID‐19 vaccine is a major public health issue.MethodIn December 2020 to February 2021, across the United Kingdom, 621 adults with ID were interviewed remotely and 348 family carers or support workers of adults with ID with greater needs completed an online survey, including a question on willingness to take a COVID‐19 vaccine if offered.ResultsEighty‐seven per cent of interviewees with ID were willing to take a COVID‐19 vaccine, with willingness associated with white ethnicity, having already had a flu vaccine, gaining information about COVID‐19 from television but not from social media, and knowing COVID‐19 social restrictions rules. A percentage of 81.7% of surveyed carers of adults with ID with greater needs reported that the person would be willing to take a COVID‐19 vaccine, with willingness associated wi...
Journal of Applied Research in Intellectual Disabilities, 2020
BackgroundBased on self‐reported social capital, different typologies of family networks of peopl... more BackgroundBased on self‐reported social capital, different typologies of family networks of people with intellectual disabilities were examined. Associations between behavioural and emotional problems or well‐being and typologies were investigated.Method137 participants with mild intellectual disability were interviewed using the Family Network Method‐Intellectual Disability to assess their emotionally supportive family relationships. Data on participants’ well‐being and behavioural and emotional problems were also gathered. Latent class analysis was used to identify family typologies based on social network measures.ResultsFour distinguishable typologies were identified, two supportive and two less supportive. A small association was found with behavioural and emotional problems and one of the supportive typologies. Associations with constructs of well‐being were found for both supportive and less supportive typologies.ConclusionsA variety of family types were found, with implicati...
BackgroundPsychological therapies with a proven efficacy in the general population are being adap... more BackgroundPsychological therapies with a proven efficacy in the general population are being adapted for use with people who have intellectual disabilities in community settings.MethodsA systematic review of peer‐reviewed literature published between 1980 and 2010 was carried out, to identify the evidence base for effective psychological interventions in challenging behaviour. Relevant databases were searched using applied key terms. Evidence was graded, according to the quality of the research. A best‐evidence Matrix was produced to improve guidance for service providers and practitioners in the range, volume and quality of psychological interventions.ResultsThere is a limited amount of efficacy research that meets the most stringent standards of empirical evidence.ConclusionsIt is important to broaden the evidence base and consider the context of psychological interventions, alongside the values underpinning care and treatment.
Purpose The COVID-19 pandemic meant that it became impossible for many individuals with intellect... more Purpose The COVID-19 pandemic meant that it became impossible for many individuals with intellectual disability to access specialist mental health support. The purpose of this study was to evaluate a set of guided self-help resources adapted for delivery on an outreach basis. Design/methodology/approach The use and impact of the resources were evaluated through: data about downloads and requests for printed materials; interviews with individuals who used the resources; webinars with organisations; family members and support workers who had delivered the resources and an online survey with individuals who had delivered the resources. Findings The resources had considerable reach, with over 12,555 printed copies requested from across Scotland. The materials were perceived to be relevant and useful, helping individuals to talk about difficulties and to be aware that others were facing similar challenges. Originality/value The findings highlight the potential long-term value of guided s...
BackgroundNo previous studies have reported predictors and moderators of outcome of psychological... more BackgroundNo previous studies have reported predictors and moderators of outcome of psychological therapies for depression experienced by adults with intellectual disabilities (IDs). We investigated baseline variables as outcome predictors and moderators based on a randomised controlled trial where behavioural activation was compared with guided self‐help.MethodsThis study was an exploratory secondary data analysis of data collected during a randomised clinical trial. Participants (n = 161) were randomised to behavioural activation or guided self‐help and followed up for 12 months. Pre‐treatment variables were included if they have previously been shown to be associated with an increased risk of having depression in adults with IDs or have been reported as a potential predictor or moderator of outcome of treatment for depression with psychological therapies. The primary outcome measure, the Glasgow Depression Scale for Adults with Learning Disabilities (GDS‐LD), was used as the depe...
Background Parents of children with intellectual disability are 1.5–2 times more likely than othe... more Background Parents of children with intellectual disability are 1.5–2 times more likely than other parents to report mental health difficulties. There is a lack of clinically effective and cost-effective group well-being interventions designed for family carers of young children with intellectual disability. Aim To examine the feasibility of a randomised controlled trial of the clinical effectiveness and cost-effectiveness of the Early Positive Approaches to Support (E-PAtS) intervention. Design A feasibility study (including randomisation of families into a two-arm trial), questionnaires to assess the feasibility of proposed outcome measures (including resource use and health-related quality of life) and practitioner/family carer interviews. An additional question was included in an online UK survey of families, conducted by the research team to assess usual practice, and a survey of provider organisations. Setting Families recruited from community contexts (i.e. third sector, loca...
The tacit practical knowledge of psychologists and support staff to foster a real connection betw... more The tacit practical knowledge of psychologists and support staff to foster a real connection between support staff and people with intellectual disabilities and challenging behaviour was explored. Therefore, six dyads comprising individuals with intellectual disabilities and challenging behaviour and their support staff were video recorded during joint engagement in an activity. To tap into the implicit knowledge of professionals about when staff have ‘a real connection’ with a person with an intellectual disability, 10 psychologists and 10 support staff were asked to pinpoint these moments in the pre-recorded video compilation. They also shared their interpretations about what they considered to be a real connection. The results displayed that participants designated real connections as occurring when they noticed concrete interactions taking place. Based on thematic analysis of the data, four themes were identified that encapsulated what professionals deemed to be a real connectio...
BackgroundDuring the Covid‐19 pandemic, there has been a worldwide increase in the use of digital... more BackgroundDuring the Covid‐19 pandemic, there has been a worldwide increase in the use of digital technology. Many people with learning disabilities have learned new digital skills, taken part in online activities, and kept in touch with family and friends using video calls. However, the experiences of digital participation or nonparticipation for the people with profound and multiple learning disabilities (PMLD) is less understood.MethodBetween December 2020 and August 2021, family carers or paid support workers of adults with PMLD completed an online survey around the experiences of the person they care for during the Covid‐19 pandemic, including questions on Internet use. We draw on the findings of this UK‐wide study to explore the digital participation of the people with PMLD during the pandemic.FindingsAround half of the people with PMLD had Internet access at home. Around half of the participants interacted with others on video calls like Facetime or Zoom and most commonly use...
Having a disability, in particular, an intellectual disability, is associated with Internet non-u... more Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being.
Journal of Applied Research in Intellectual Disabilities
BackgroundPeople with intellectual disabilities are at risk of experiencing stigma and require th... more BackgroundPeople with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives.MethodDevelopment and piloting of a 5‐session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage and resist stigma. Ten pre‐existing groups (N = 67) in third sector and education settings participated. Interviews with participants (n = 26), facilitators (n = 9) and significant others (n = 7) 2–4 months after the intervention assessed perceived impact.ResultsPerceived benefits of the intervention for participants included increased understanding, improved connections with others, drive for advocacy, increased activity and self‐efficacy, and opportunity to process difficult events and emotions. Differential impact depending on individuals' pre‐existing self‐advocacy skills was noted.ConclusionsThis early‐stage study indicates that furthe...
Background: Parents of children with intellectual disabilities are likely to experience poorer me... more Background: Parents of children with intellectual disabilities are likely to experience poorer mental well-being and face challenges accessing support. Early Positive Approaches to Support (E-PAtS) is a group-based programme, co-produced with parents and professionals, based on existing research evidence and a developmental systems approach to support parental mental well-being. The aim of this study was to assess the feasibility of community service provider organisations delivering E-PAtS to parents/family caregivers of young children with intellectual disability, to inform a potential definitive randomised controlled trial of the effectiveness and cost-effectiveness of E-PAtS.Methods: This study was a feasibility cluster randomised controlled trial, with embedded process evaluation. Up to two parents/family caregivers of a child (18 months to <6 years old) with intellectual disability were recruited at research sites and allocated to intervention (E-PAtS and usual practise) or...
Journal of Policy and Practice in Intellectual Disabilities, 2022
Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to ... more Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to experience mental health difficulties and face barriers obtaining mental health care. COVID‐related public health restrictions, combined with heightened challenges to obtain timely mental health care, have served to worsen this situation internationally, with a combination of new onset conditions and worsening mental health for those already struggling. In this narrative review, we summarize literature on the mental health of adults with ID during the COVID‐19 pandemic to describe what is known based on clinician perceptions, existing administrative health data, family and staff perceptions, and self‐report. In addition to noting similarities and differences in findings based on the source of information, we also explored how experiences differed depending on where and when the research was conducted. Based primarily on research conducted during the first six months of the pandemic, ther...
Journal of Applied Research in Intellectual Disabilities, 2021
BackgroundSocial inclusion has been explored using a wide range of theories and methods. Belongin... more BackgroundSocial inclusion has been explored using a wide range of theories and methods. Belonging and reciprocity have been identified as key components of social inclusion. This systematic methodological review identifies and evaluates the theoretical frameworks and qualitative approaches adopted to explore belonging and reciprocity in the lives of adults with intellectual disabilities.MethodA systematic search was conducted across ten databases. Screening and quality appraisal were carried out independently by two researchers, and data were extracted to provide detailed accounts of the theories and methods employed.ResultsSeventeen papers met inclusion criteria. Clear conceptualisations of belonging and reciprocity were lacking, and these concepts were rarely the focus of the research. Theoretical and methodological shortcomings across this literature were identified and discussed.ConclusionsMore nuanced conceptualisations of belonging and reciprocity may be helpful in future res...
When working with people with ID, there are a number of other people who we may need to be in con... more When working with people with ID, there are a number of other people who we may need to be in contact with, not just to gather background information but also to recruit them as allies who can play an influential and long-term role in implementing and maintaining psychological and environmental change. We need to carefully consider when it is and when it is not suitable to involve other people so that we respect the client’s right to confidentiality. We may need to spend time with caregivers and staff to make sure that they understand and agree with the CBT model and the formulation. As therapists we must also liaise with our health and social services colleagues and ensure that the various interventions received by clients are well coordinated and are not detrimental to each other. Family carers and support workers as well as health and social services professionals can complement the CBT approach and improve the chances of significant and enduring improvements in psychological wel...
BackgroundGiven the much greater COVID‐19 mortality risk experienced by people with intellectual ... more BackgroundGiven the much greater COVID‐19 mortality risk experienced by people with intellectual disabilities (ID), understanding the willingness of people with ID to take a COVID‐19 vaccine is a major public health issue.MethodIn December 2020 to February 2021, across the United Kingdom, 621 adults with ID were interviewed remotely and 348 family carers or support workers of adults with ID with greater needs completed an online survey, including a question on willingness to take a COVID‐19 vaccine if offered.ResultsEighty‐seven per cent of interviewees with ID were willing to take a COVID‐19 vaccine, with willingness associated with white ethnicity, having already had a flu vaccine, gaining information about COVID‐19 from television but not from social media, and knowing COVID‐19 social restrictions rules. A percentage of 81.7% of surveyed carers of adults with ID with greater needs reported that the person would be willing to take a COVID‐19 vaccine, with willingness associated wi...
Journal of Applied Research in Intellectual Disabilities, 2020
BackgroundBased on self‐reported social capital, different typologies of family networks of peopl... more BackgroundBased on self‐reported social capital, different typologies of family networks of people with intellectual disabilities were examined. Associations between behavioural and emotional problems or well‐being and typologies were investigated.Method137 participants with mild intellectual disability were interviewed using the Family Network Method‐Intellectual Disability to assess their emotionally supportive family relationships. Data on participants’ well‐being and behavioural and emotional problems were also gathered. Latent class analysis was used to identify family typologies based on social network measures.ResultsFour distinguishable typologies were identified, two supportive and two less supportive. A small association was found with behavioural and emotional problems and one of the supportive typologies. Associations with constructs of well‐being were found for both supportive and less supportive typologies.ConclusionsA variety of family types were found, with implicati...
BackgroundPsychological therapies with a proven efficacy in the general population are being adap... more BackgroundPsychological therapies with a proven efficacy in the general population are being adapted for use with people who have intellectual disabilities in community settings.MethodsA systematic review of peer‐reviewed literature published between 1980 and 2010 was carried out, to identify the evidence base for effective psychological interventions in challenging behaviour. Relevant databases were searched using applied key terms. Evidence was graded, according to the quality of the research. A best‐evidence Matrix was produced to improve guidance for service providers and practitioners in the range, volume and quality of psychological interventions.ResultsThere is a limited amount of efficacy research that meets the most stringent standards of empirical evidence.ConclusionsIt is important to broaden the evidence base and consider the context of psychological interventions, alongside the values underpinning care and treatment.
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