Background The measurement of subjective well-being is challenging with samples of adolescents with intellectual disability (ID) given the cognitive and linguistic difficulties they face in comprehending standardised measures, and as such is primarily based on proxy reports. The lack of appropriate tools needs to be addressed so that adolescents with ID can self-report on their own well-being. The current study reports on the use of participatory research methods to adapt and modify two standardised self-report measures of subjective well-being suitable for completion by adolescents with ID. Method Two special schools were recruited for this study. At each school, staff (n = 15) and pupils aged 11-17 years (n = 35) participated. A series of co-design workshops were conducted to adapt two standardised subjective well-being measures: Kidscreen-10 and short-form Warwick-Edinburgh Mental Well-being Scale. Results Specific aspects for measure adaption were identified: simplifying the item wording and phrasing; inclusion of pictorial communication symbols and visual prompts to represent the meaning of items; changing of tense of questions from past to present; asking questions rather than statements; reducing 5-point Likert scales to 3-point or dichotomous; presenting one item at a time during administration; and developing alternate formats of the survey to ensure inclusivity. Conclusions This paper illustrates the value of using participatory research methods when working alongside adolescents with ID and offers methodological, as well as practical, guidance in the context of adapting subjective self-report measures for this target group, serving as a guide to fellow researchers and clinicians interested in modifying or developing self-report measures for adolescents with ID.
Background Whilst there are studies that have systematically reviewed the psychometric properties of quality of life measures for children and young people with intellectual disabilities, these narrowly focus on disease or health conditions. The objective of this planned systematic review is therefore to collate, summarise, and critically appraise the psychometric properties of self-report health-related quality of life (HRQoL) and subjective wellbeing measures used by adolescents (aged 11–16) with an intellectual disability. Methods We designed and registered a study protocol for a systematic review of studies which explores the psychometric properties of self-report HRQoL and subjective wellbeing measures used by adolescents with intellectual disabilities. Electronic databases including PsycINFO, CINAHL, MEDLINE, and ERIC will be searched using predefined search terms to identify relevant studies. Quantitative and mixed-methods studies, and studies published in peer-reviewed journals or grey literature, will be included. Review papers, editorials, and case studies will be excluded. Eligible studies should identify self-report measures which assess HRQoL and subjective wellbeing among adolescents with intellectual disabilities. The methodological quality of the included studies will be assessed by applying the COSMIN Risk of Bias checklist. The quality of the evidence (i.e. the total body of evidence used for the overall ratings on each psychometric property of an instrument) will be evaluated in accordance with the modified GRADE guidelines. Discussion This systematic review will be among the first to systematically explore the psychometric properties of self-report HRQoL and subjective wellbeing measures used by adolescents with intellectual disabilities. By providing evidence-based knowledge about measures being used in HRQoL and subjective wellbeing research amongst this population, and more importantly how reliable and valid these measures are, the most suitable for use will be identified. Our findings will be of potential interest to clinicians, researchers, and service providers who need information about the methodological quality and the characteristics of measures to make informed decisions about the most reliable and valid tool for a specific purpose. The findings from this study will contribute to the knowledge surrounding available and appropriate measures to use for measuring HRQoL and subjective wellbeing of adolescents with intellectual disabilities, which are necessary to inform intervention development and future health policy. Systematic review registration The protocol has been registered at the International Prospective Register of Systematic Reviews (PROSPERO). The registration number is CRD42021231697.
Background There are no validated self‐report measures that can be used to assess health and wellbeing in adolescents with intellectual disability (ID). Method The aim of this study was to explore the psychometric properties of two newly adapted self‐report health‐related quality of life (HRQoL) and mental wellbeing measures: the Intellectual Disability versions of the Short Warwick–Edinburgh Mental Wellbeing Scale (ID‐SWEMWBS) and Kidscreen10 (ID‐Kidscreen10). For this, we used data from a sample of 427 adolescents (aged 11–19) with ID recruited from special school settings. Results Confirmatory factor analysis (CFA) was conducted to validate the factor structure of both measures. Internal consistency was assessed using Cronbach's alpha and test–retest reliability was analysed using intra‐class correlation coefficients. The internal consistency measured using Cronbach's alpha was found to be in the range of 0.70–0.78, test–retest reliabilities were expressed using intra‐class correlation coefficients that were found to be high for both measures (ID‐SWEMWBS, 0.758; ID‐Kidscreen10, 0.723), and the CFA supported the unidimensional structure of both measures. Conclusions The results of this study indicate that the ID‐SWEMWBS and ID‐Kidscreen10 have very good psychometric properties and can be used as self‐report measures to assess HRQoL and mental wellbeing in adolescents with ID.
Domestic violence (DV) in adult and young people's intimate partner relationships is a social and public health problem across the globe. Education can play an important and unique role in addressing DV; however, it remains relatively under-investigated. The aim of this qualitative study set in Northern Ireland, the first of its kind, was to explore young people's views and experiences of DV education. Focus groups were conducted with 188 pupils (97 males and 91 females) aged 16 to 18 attending post-primary school. The data were analysed using thematic analysis and reveal five barriers to DV education: (1) absence of DV teaching and learning; (2) DV is a taboo topic; (3) lack of teacher training and expertise on DV; (4) religious influence; (5) prioritisation of academic achievement over pupil wellbeing. The results demonstrate that changes are needed in schools to improve the role of schools in addressing DV. From this qualitative study, we make recommendations for how school-based DV education may help prevent and protect young people against intimate partner violence.
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