Suchergebnisse

Research with routine care data (RCD) is not always a transparent process to the people receiving care for disabilities or impairment. This study aimed to understand the point of view on secondary use of care data for research from the people with visual or intellectual disabilities themselves. In total 36 participants from the UK and the Netherlands were interviewed (20 with intellectual disabilities, 16 with visual impairment). Transcripts were analysed inductively using the Framework Approach. Interview results showed that people from both countries and disability groups assumed that RCD research took place and saw potential contributions to care quality as grounds for legitimacy. Their themes of concern were about inaccuracy and threats to anonymity of data. Interviewees made suggestions for improving conditions under which RCD research can happen with informed consent. In addition to informing data governance policies of organisations serving people with disabilities, findings underscore the contribution that people with disabilities can make to data governance.

AbstractTo enhance social inclusion of people with (mild) intellectual disabilities, policy tends to focus on increasing their informal supportive networks. Family members, mostly parents, are often the main providers of informal support to people with mild intellectual disabilities. Previous research has shown the utility of social capital as a theoretical framework to examine support in the family relationships of people with mild intellectual disabilities, and has shown that several features of the family‐based social capital of people with mild intellectual disabilities are dependent on support and living arrangements. However, existing research on support and living arrangements does not take the key features of family‐based social capital (i.e., bonding and bridging social capital, reciprocity) into account. Therefore, the aim of the current study is to examine the family‐based social capital of people with mild intellectual disabilities supported in 24‐h residential settings (n = 29) versus outreach support settings (n = 45). All participants were individually interviewed about their family support relationships using the Family Network Method‐Intellectual Disability (FNM‐ID). Data were analyzed quantitatively using social network analyses and group comparisons. No significant differences between the two subgroups were found in the social network measures: the two subgroups did not differ in their experience of bonding and bridging social capital, nor in terms of the experienced reciprocity in their family relationships. However, a few differences in the composition of the family network were found. While people with mild intellectual disabilities in outreach support settings were more likely to include children in their significant family network and to provide support to parents, participants in 24‐h care settings were more likely to report extended family as significant family network members.

AbstractBackgroundNo studies have explored the acceptability of Behavioural Activation and Guided Self‐Help interventions for depression with people who have intellectual disabilities.MethodTwenty‐five participants were purposively sampled from participants taking part in a trial comparing Behavioural Activation with a Guided Self‐Help intervention. A framework analysis was used to analyse interviews covering participants' expectations and views of therapy.ResultsParticipants were largely positive about both interventions. However, they identified specific aspects of each intervention which they had found helpful. All participants valued the therapeutic relationship. The participants also had a number of criticisms and suggestions for improving the therapies. A common concern was the time‐limited nature of the interventions and a wish for longer‐term help. Overall, both sets of participants felt the interventions had relevance for their wider lives.ConclusionsThe participants reported having positive engagement with the therapies but expressed a wish for longer‐term supportive relationships.

AbstractBackgroundClinicians recommend including carers or others in a supporting role in the therapy as an important adaptation of psychological therapies for people with intellectual disabilities. This nested qualitative study from a larger trial explored supporters' experiences of supporting people with intellectual disabilities receiving behavioural activation or guided self‐help therapies for depression.MethodTwenty‐one purposively sampled supporters were interviewed. The semi‐structured interviews were subject to framework analysis, covering expectations of therapy, views of therapy sessions, relationships with therapist and participant, and perceived changes.ResultsSupporters were positive about both therapies and reported both therapy‐specific and nonspecific therapeutic factors that had significant positive impacts on people's lives. Most supporters reported their involvement contributed to the interventions' effectiveness, and helped establish closer relationships to the people they were supporting.ConclusionsThe presence of supporters within psychological therapies for people with intellectual disabilities can be an effective adaptation to therapies for this population.

AbstractBackgroundHealth professionals were trained to deliver adapted psychological interventions for depression to people with learning disabilities and depression alongside a supporter. Exploring the delivery of psychological interventions can help increase access to therapy.MethodTwenty‐seven participants took part in six focus groups, and the data were subject to a Framework Analysis.ResultsThe structure and focus of the manualised therapies, and the use of specific techniques were perceived as key to service‐user engagement. Supporters' involvement was valued by therapists if they had a good relationship and regular contact with the individual they supported. Regular clinical supervision was regarded as vital in understanding their role, assessing progress and delivering the interventions.ConclusionsThe findings highlight that health professionals can embrace a focussed therapeutic role and increase access to psychological therapies for people with intellectual disabilities.

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.