Daniel Acton, Sujeet Jaydeokar, Ruth Taylor, Steven Jones
{"title":"Evaluating the feasibility of a co-produced, bespoke dementia education programme for formal caregivers of individuals with intellectual disability.","authors":"Daniel Acton, Sujeet Jaydeokar, Ruth Taylor, Steven Jones","doi":"10.1177/17446295261440431","DOIUrl":"https://doi.org/10.1177/17446295261440431","url":null,"abstract":"<p><p>Dementia education programmes for formal caregivers of people with intellectual disability are limited. This study was not designed or powered to evaluate effectiveness, but to assess the feasibility, acceptability, and appropriateness of outcome measures for a co-produced dementia education programme within intellectual disability services. A mixed-methods, quasi-experimental feasibility study was conducted with 40 formal caregivers recruited from supported living and residential providers across four NHS Trusts in the Northwest of England. The programme comprised interactive modules, case studies, group discussion, and practical tools to support the management of dementia-related behaviours and promote person-centred care. Feasibility outcomes included recruitment, retention, acceptability, and completion of outcome measures. The dementia education programme was feasible and acceptable with only minor modifications. Recruitment and retention were good, with 100% completion of follow-up outcome measures, supporting the suitability of the programme and study procedures for future research.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295261440431"},"PeriodicalIF":1.4,"publicationDate":"2026-04-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147646789","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Matthijs A Heijstek, Lex Wijnroks, Agnes M Willemen, Marian J Jongmans
{"title":"Assessing maladaptive stress response patterns in individuals with intellectual disabilities: Development and preliminary validation of the MSRP-Q.","authors":"Matthijs A Heijstek, Lex Wijnroks, Agnes M Willemen, Marian J Jongmans","doi":"10.1177/17446295261437715","DOIUrl":"https://doi.org/10.1177/17446295261437715","url":null,"abstract":"<p><p>The aim of this study was to develop and validate the Maladaptive Stress Response Patterns Questionnaire (MSRP-Q), a new informant-based instrument for adults with intellectual disabilities in residential care. The MSRP-Q identifies seven maladaptive stress response patterns observable in daily life. The questionnaire consists of 34 items. Preliminary psychometric analyses (N = 80) showed sufficient to good internal consistency, with 76% of the items aligning with their intended subscales, but also indicate that the MSRP-Q is most suitable for individuals with mild-moderate intellectual disabilities. Construct validity was supported by moderate correlations between MSRP-Q scores and the scores on three instruments measuring childhood stressors, current stressful events, and chronic stressors. A weak but significant correlation was found with the Fear and Tension subscale of the ADESS. These findings suggest that the MSRP-Q may be a promising tool for the identification of person-specific stress response patterns.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295261437715"},"PeriodicalIF":1.4,"publicationDate":"2026-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147623443","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Family stress and resilience: Understanding the challenges faced by fathers of children with intellectual disabilities.","authors":"Özlem Altındağ Kumaş","doi":"10.1177/17446295261437726","DOIUrl":"https://doi.org/10.1177/17446295261437726","url":null,"abstract":"<p><p>This study examines the moderating role of family stress in the relationship between psychological well-being and resilience among children with intellectual disabilities. It also explores differences in psychological well-being, resilience, and family stress levels based on the severity of the child's disability. The sample included 200 fathers from Türkiye, with a mean age of 42.5 years, and children aged 3-10 years. The results show that psychological well-being positively predicts resilience, and family stress moderates this relationship, with higher family stress levels associated with reduced resilience. Fathers of children with mild intellectual disabilities reported higher psychological well-being and resilience compared to those with moderate or severe disabilities. These findings highlight the importance of family stress management and resilience-building strategies in supporting fathers of children with intellectual disabilities. Future research should use diverse samples and longitudinal designs to further explore these dynamics.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295261437726"},"PeriodicalIF":1.4,"publicationDate":"2026-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147491923","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Can the P-C-P quality framework be used to understand service quality from the perspective of service users and their significant others accessing specialist community teams for people with learning disabilities? A framework analysis.","authors":"Shauni Richardson, Dani Lewis, Dave Dagnan","doi":"10.1177/17446295261434776","DOIUrl":"https://doi.org/10.1177/17446295261434776","url":null,"abstract":"<p><p>There is no research that considers service user perspectives on the quality of Community Teams for People with Learning Disabilities (CTPLDs) from within standard quality assessment frameworks. Two hundred and sixty-seven people with intellectual disabilities and 226 significant others completed an online survey detailing their experiences of six specialist CTPLDs in the North of England. Data were analysed using framework analysis. The data from service users and significant others were coded into the attributes of the Peripheral-Core-Pivotal (P-C-P) framework. Responses emphasised the Core attribute which describes service processes (78.0% of responses from people with intellectual disabilities and 73.8% of responses from significant others) and include aspects of empathy, assurance, reliability, and responsiveness, over Peripheral (service structure) and Pivotal (service outcome) attributes. We discuss the advantages of using a quality framework such as the P-C-P and the important aspects of service quality identified by people with intellectual disabilities and their significant others.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295261434776"},"PeriodicalIF":1.4,"publicationDate":"2026-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147436621","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The recognition and assessment of pain in people with profound intellectual disabilities by nurses: An appreciative inquiry.","authors":"Maeve Goodall, Kate Irving, Mary Nevin","doi":"10.1177/17446295241303192","DOIUrl":"10.1177/17446295241303192","url":null,"abstract":"<p><p>Individuals with profound intellectual disabilities are non-verbal and reliant on carers for pain recognition, assessment and management. Pain is a multifaceted and interconnected experience. Assessment tools designed specifically for this population are needed. This study aimed to develop methods for improved pain care practices by nurses. This qualitative study followed the four phases of appreciative inquiry; Discovery, Dream, Design, Destiny. Eight nurses were recruited as co-researchers from one Irish intellectual disability organisation. Data were analysed from individual and focus group interviews, using thematic analysis and continuous reflexivity. A pain awareness campaign and RAPPID tool (recognition and assessment of pain in people with profound intellectual disabilities) were developed. Respect for personhood in individuals with profound intellectual disabilities is reflected through holistic approaches to pain assessment. The empowerment of nurses enables positive change. Implicit knowledge can be communicated more proficiently with a formal, collaborative tool.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"87-106"},"PeriodicalIF":1.4,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13049226/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142688501","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ana Belén Correa, Ángel Castro, María Dolores Gil-Llario
{"title":"Attitudes towards the sexuality of adults with intellectual disabilities: Family, staff, community and student perspectives.","authors":"Ana Belén Correa, Ángel Castro, María Dolores Gil-Llario","doi":"10.1177/17446295241276028","DOIUrl":"10.1177/17446295241276028","url":null,"abstract":"<p><p>The sexual expression of adults with intellectual disabilities can be hindered by negative attitudes towards their sexuality. This study aims to examine current attitudes of staff, family, community and students towards the sexuality of adults with intellectual disabilities and how sociodemographic variables may influence these attitudes. Three hundred and five participants completed an online questionnaire, including the ASEXID scale. Scores were highest for the normalising attitude and lowest for the negative attitude, with intermediate scores for the paternalistic attitude. Staff and university students exhibited a more normalising attitude than families and community. Community participants exhibited a more negative attitude than staff and students. Older age was associated with less normalising and more paternalistic attitudes. Being male was associated with a more negative attitude. These findings should be taken into account by professionals who support adults with intellectual disabilities when disseminating information and resources to other professionals or families on how to support these adults' sexuality. Intermediate scores on the paternalistic attitude may mediate difficulties in supporting adults with intellectual disabilities in their sexuality.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"21-37"},"PeriodicalIF":1.4,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142001008","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Assessing the effectiveness of menstrual health education in Japan: A non-randomized comparative study of adolescent girls with typical development and those with intellectual disabilities and high support needs.","authors":"Satoko Tsuda, Yuki Maruyama, Chika Muroka, Chie Kondo, Satoshi Takada","doi":"10.1177/17446295241281394","DOIUrl":"10.1177/17446295241281394","url":null,"abstract":"<p><p>This study elucidates the effectiveness of a menstrual education program with segmented MHM procedure on the MHM skills of girls with intellectual disabilities/HSN compared with those with typical development. Participants in a nonrandomized comparative study included nine adolescent girls with intellectual disabilities/HSN and ten with typical development. They practiced MHM on dolls three times: before, immediately after, and three months after participating in the educational program. Although the total MHM scores were significantly higher after both groups attended the program, the girls with intellectual disabilities/HSN had significantly lower total and mean scores on MHM items than girls with typical development. They still required instruction on the majority of the items after 3 months. Meanwhile, girls with intellectual disabilities/HSN showed a significant improvement in napkin changing skills and maintained post-course scores 3 months later, similar to those with typical development.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"53-67"},"PeriodicalIF":1.4,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142113345","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Understanding the menopausal experiences of women with intellectual disabilities: A scoping review.","authors":"Katie Moore, Mary Reidy, Sinead Foran","doi":"10.1177/17446295231182246","DOIUrl":"10.1177/17446295231182246","url":null,"abstract":"<p><p>During the process of ageing, women experience important hormonal, endocrine and biological changes. Menopause is a natural phenomenon in female development, during which women's ovarian function shifts from a reproductive to a non-reproductive state. The experience of menopause is unique for every woman, including women with intellectual disabilities. Globally, the available literature on women with intellectual disabilities and menopause focuses on providing medical insights into onset and symptoms and little attention has been paid to documenting how menopause affects women themselves. This represents a significant gap in understanding how women understand this change in life and has been a key justification for the need for this research. This scoping review aims to consider published studies capturing the perceptions, experiences and attitudes of women with intellectual disabilities and their caregivers as they transition through the menopause.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"107-136"},"PeriodicalIF":1.4,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13049219/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9693003","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Vladimir Vukovic, Amina Banda, Lara Carneiro, Soner Dogan, Peter Knapp, Martin McMahon, Dragana Milutinovic, Pinar Soylar, Kate Sykes, Betul Tosun, Ayla Yava, Vladimir Trajkovski, John Wells, Maarten Cuypers
{"title":"The importance of cancer prevention policies to inform and guide preventative and screening measures for people with intellectual disabilities: The COST project \"Cancer- Understanding Prevention in Intellectual Disabilities\".","authors":"Vladimir Vukovic, Amina Banda, Lara Carneiro, Soner Dogan, Peter Knapp, Martin McMahon, Dragana Milutinovic, Pinar Soylar, Kate Sykes, Betul Tosun, Ayla Yava, Vladimir Trajkovski, John Wells, Maarten Cuypers","doi":"10.1177/17446295231213752","DOIUrl":"10.1177/17446295231213752","url":null,"abstract":"<p><p>Cancer is a global public health problem, but its exact prevalence in people with intellectual disabilities is still uncertain. This population, with limited health skills and complex health needs, faces many challenges in cancer prevention, screening, timely diagnosis and treatment. Furthermore, they are often underrepresented in general cancer prevention and screening policies across Europe, leading to widened disparities in health outcomes and premature mortality. Thus, unified national and local policies are needed to reduce inequalities and promoting a pan-European inclusion of people with intellectual disabilities. Our goal is to raise public awareness of this issue, including the involvement of people with intellectual disabilities, and promote engagement from relevant stakeholders. The COST Action 'Cancer- Understanding Prevention in Intellectual Disabilities' (CUPID) project will address health inequalities faced by people with intellectual disabilities in relation to cancer, and support the development of policy recommendations specifically tailored to their unique cognitive and healthcare needs, having a positive long-term impact on quality of life.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"159-172"},"PeriodicalIF":1.4,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13049224/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71522923","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Preventive breast health care, an embarrassing subject for women with intellectual disability.","authors":"Päivi Adolfsson, Cecilia Arving, Marie Lange","doi":"10.1177/17446295251326010","DOIUrl":"10.1177/17446295251326010","url":null,"abstract":"<p><p>Women with intellectual disability run an increased risk of dying of breast cancer compared to the general population. There is a clear connection between late detection and low participation in the mammogram screening program. This study aimed to explore the views and experiences of breast health care in women with intellectual disability. Semi-structured interviews were performed individually and in small groups among 11 women with intellectual disability in Sweden. Breast cancer screening is not adapted to women with intellectual disability. Insufficient support and disrespectful treatment can cause ignorance, fear and anxiety. Familiarity with processes and personal networks are examples of improvement in participation. Preventive breast health care is a sensitive topic for many women with intellectual disability that needs to be addressed. Preventive breast health care needs to be more inclusive and better adapted. Personal networks must not determine the possibility of preventive care.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"68-86"},"PeriodicalIF":1.4,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13049213/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143634910","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}