Evaluation of an adapted version of the International Trauma Questionnaire for use by people with intellectual disabilities.

AIMS: The International Trauma Questionnaire (ITQ) is a novel assessment instrument that is aligned to the ICD-11 diagnoses of post-traumatic stress disorder (PTSD) and complex PTSD (CPTSD). The purpose of this study was to develop and evaluate an adapted version of the ITQ suitable for use by people with intellectual disabilities. METHODS: The ITQ-ID follows the original ITQ, using wording developed in collaboration with a focus group of people with intellectual disabilities The ITQ-ID was administered to 40 people with intellectual disabilities recruited from learning disability forensic and community settings, alongside a Trauma Information Form and the Impact of Event Scale-Intellectual Disabilities (IES-IDs). RESULTS: Most participants reported multiple traumatizing events. Around half of the participants met strict criteria for a diagnosis of PTSD, and around three quarters met looser criteria. Depending on definitions, between 66% and 93% of those who met criteria for PTSD also met criteria for a diagnosis of CPTSD. The ITQ-ID showed a single-component structure, with very good-to-excellent internal consistency, excellent test-retest reliability, and evidence of concurrent, discriminant, and content validity. SIGNIFICANCE: The results support the potential of the ITQ-ID for assessment of PTSD and CPTSD in people with intellectual disabilities in both clinical and research contexts and highlight the need for further validation work.

The Experiences of Carers of Adults With Intellectual Disabilities During the First COVID-19 Lockdown Period.

Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers. Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the first 2020 lockdown period. Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results: Four main themes were identified: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being. Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown period.

BACKGROUND: Recent COVID-19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. AIM: The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. METHODS: Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis. RESULTS: Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future. CONCLUSIONS: All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well-being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.

Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities.

INTRODUCTION: The measures implemented to manage the COVID-19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers. METHOD: Informal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online questionnaire. Almost all the data were collected while strict lockdown conditions were in place. RESULTS: Relative to carers of children without intellectual disability, carers of both children and adults with intellectual disability had significantly greater levels of a wish fulfilment coping style, defeat/entrapment, anxiety, and depression. Differences were 2-3 times greater than reported in earlier pre-pandemic studies. Positive correlations were found between objective stress scores and all mental health outcomes. Despite their greater mental health needs, carers of those with intellectual disability received less social support from a variety of sources. CONCLUSIONS: The greater mental health needs of carers in the context of lesser social support raises serious concerns. We consider the policy implications of these findings.

Using an interactive DVD about type 2 diabetes and insulin therapy in a UK South Asian community and in patient education and healthcare provider training.

OBJECTIVES: To develop and pilot-test the feasibility and effectiveness of an interactive DVD about misconceptions within South Asian communities regarding insulin treatment in type 2 diabetes, for educating patients and community members and training healthcare providers. METHODS: The project setting was a South Asian (mainly Indian) community in Leicester, UK. Qualitative evidence from our previous studies was used to inform the content of the DVD script and accompanying resources. The intervention involved three components: facilitating DVD viewings for people with/without diabetes in community settings; training healthcare providers involved in managing South Asian patients with diabetes in primary care; and using the DVD and resources in primary care patient consultations. Evaluation involved a range of approaches including face-to-face interviews, telephone feedback and questionnaires. RESULTS: Analysis of questionnaires and qualitative feedback from community participants showed some significant changes in attitudes and understanding about insulin and high acceptability of the DVD. Healthcare providers who attended the training found it informative and perceived the DVD and visual resources as potentially useful for facilitating acceptance of insulin. Primary care patient recruitment was challenging, but participants described the DVD as an acceptable and informative way of learning about insulin therapy. CONCLUSION: The DVD intervention was effective and feasible at community and healthcare provider levels. PRACTICE IMPLICATIONS: Although based on a small sample, at patient level our findings suggested that the DVD worked at different levels helping some to accept the need for insulin and others to consolidate a decision to commence this treatment. Consideration needs to be given to patient engagement strategies for implementation in primary care consultations.