People with intellectual disabilities are rarely involved in research on quality of life. The study sought to answer the question: what do people with intellectual disabilities believe improves or hinders their quality of life?
Method
Using an inclusive, accessible research design, 18 participants met in small groups to answer the study's question using their choice of arts-based media. Participants completed the analysis collaboratively, identifying key themes among their responses.
Results
The participants concluded that supports, well-being, hobbies, and activities contribute to quality of life. Lack of accessibility, assumptions, negative behaviours, stress, and negative people (staff, roommates, people in general) were identified as detractors of quality of life.
Conclusions
To continue to make progress in improving the quality of life of individuals with intellectual disabilities, the voice of those with intellectual disabilities is key. The results suggest key areas of focus to make these improvements.
{"title":"What makes life better or worse: Quality of life according to people with intellectual disabilities","authors":"Holli M. Holmes, W. Ben Mortenson","doi":"10.1111/jar.13280","DOIUrl":"10.1111/jar.13280","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities are rarely involved in research on quality of life. The study sought to answer the question: what do people with intellectual disabilities believe improves or hinders their quality of life?</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Using an inclusive, accessible research design, 18 participants met in small groups to answer the study's question using their choice of arts-based media. Participants completed the analysis collaboratively, identifying key themes among their responses.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The participants concluded that supports, well-being, hobbies, and activities contribute to quality of life. Lack of accessibility, assumptions, negative behaviours, stress, and negative people (staff, roommates, people in general) were identified as detractors of quality of life.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>To continue to make progress in improving the quality of life of individuals with intellectual disabilities, the voice of those with intellectual disabilities is key. The results suggest key areas of focus to make these improvements.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-07-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13280","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141790221","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Philcy Philip, Praveen Prasanna, Ravi Vijaya Remi, Reena Samuel, Willy T. George, Martina Shalini Arul Joseph, Mathew Lim, Gregory Armstrong, Nathan Grills
Background
Children with intellectual and developmental disabilities are at a higher risk of developing dental caries. Few scoping reviews have been conducted in India to understand their issues. We aimed to summarise the distribution and risk factors of dental caries among children and adolescents with intellectual disabilities in India.
Methods
A scoping review was conducted based on the Arksey O Malley framework. Quality assessment of studies, descriptive and thematic analyses were also conducted.
Results
We charted, collated, and summarised from four databases. Thirty-one studies met the study criteria consisting of children and adolescents with intellectual disabilities. Median caries prevalence was 70%, decayed missing and fIlled permenant teeth (DMFT) was 2.4, decayed missing and filled decidous teeth (dmft) was 2.36, and DMFS was 3.7. Major determinants were the severity of disability, socioeconomic status and parents' education. Oral care and dental visits were inadequate.
Conclusion
Further exploration is required to improve access and reduce caries experience and prevalence among children with intellectual and developmental disabilities in India.
{"title":"Prevalence of dental caries among children and adolescents with intellectual disability in India: A scoping review","authors":"Philcy Philip, Praveen Prasanna, Ravi Vijaya Remi, Reena Samuel, Willy T. George, Martina Shalini Arul Joseph, Mathew Lim, Gregory Armstrong, Nathan Grills","doi":"10.1111/jar.13278","DOIUrl":"10.1111/jar.13278","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with intellectual and developmental disabilities are at a higher risk of developing dental caries. Few scoping reviews have been conducted in India to understand their issues. We aimed to summarise the distribution and risk factors of dental caries among children and adolescents with intellectual disabilities in India.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A scoping review was conducted based on the Arksey O Malley framework. Quality assessment of studies, descriptive and thematic analyses were also conducted.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We charted, collated, and summarised from four databases. Thirty-one studies met the study criteria consisting of children and adolescents with intellectual disabilities. Median caries prevalence was 70%, decayed missing and fIlled permenant teeth (DMFT) was 2.4, decayed missing and filled decidous teeth (dmft) was 2.36, and DMFS was 3.7. Major determinants were the severity of disability, socioeconomic status and parents' education. Oral care and dental visits were inadequate.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Further exploration is required to improve access and reduce caries experience and prevalence among children with intellectual and developmental disabilities in India.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-07-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13278","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141772236","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Tamara Ondrušková, Kate Oulton, Royston Royston, EPICC-ID Research Group, Angela Hassiotis
Background
Stepping Stones Triple P (SSTP) is a complex parent-mediated intervention aimed to reduce behaviours that challenge in children with moderate to severe intellectual disabilities, aged 30–59 months.
Methods
To formulate a comprehensive understanding of SSTP implementation in the UK, we conducted a process evaluation collecting stakeholder views and considering intervention fidelity, dose, reach, delivery adaptations, and acceptability.
Results
Fidelity and quality of delivery ratings were high. Parents perceived SSTP as valuable, reporting increased parental confidence and understanding of the child's behaviours. However, only 30% of families received an adequate dose of the intervention. Parents who only received treatment as usual described feeling abandoned by current services. Service managers emphasised the importance of availability of resources and therapist training for successful intervention delivery.
Conclusions
SSTP supports effective management of early-onset behaviours that challenge. Further work is needed to ensure equitable access to the intervention across health and social care services.
{"title":"Process evaluation of a parenting intervention for pre-schoolers with intellectual disabilities who display behaviours that challenge in the UK","authors":"Tamara Ondrušková, Kate Oulton, Royston Royston, EPICC-ID Research Group, Angela Hassiotis","doi":"10.1111/jar.13263","DOIUrl":"10.1111/jar.13263","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Stepping Stones Triple P (SSTP) is a complex parent-mediated intervention aimed to reduce behaviours that challenge in children with moderate to severe intellectual disabilities, aged 30–59 months.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>To formulate a comprehensive understanding of SSTP implementation in the UK, we conducted a process evaluation collecting stakeholder views and considering intervention fidelity, dose, reach, delivery adaptations, and acceptability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Fidelity and quality of delivery ratings were high. Parents perceived SSTP as valuable, reporting increased parental confidence and understanding of the child's behaviours. However, only 30% of families received an adequate dose of the intervention. Parents who only received treatment as usual described feeling abandoned by current services. Service managers emphasised the importance of availability of resources and therapist training for successful intervention delivery.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>SSTP supports effective management of early-onset behaviours that challenge. Further work is needed to ensure equitable access to the intervention across health and social care services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Trial Registration</h3>\u0000 \u0000 <p>NCT03086876 – https://www.clinicaltrials.gov/ct2/show/NCT03086876?term=Hassiotis+Angela&draw=1&rank=1.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13263","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141753472","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Dawn E. Cavanagh, Sue Caton, Jodie Rawles, Katherine Runswick-Cole, Chris Hatton, Umesh Chauhan, Christine Hutchinson
Background
People with intellectual disabilities are more likely to be prescribed psychotropic medication than the general population and are frequently prescribed multiple medications. Understanding people with intellectual disabilities and carer perspectives is essential to improving the quality of psychotropic medication prescribing and usage.
Method
A rapid review explored people with intellectual disabilities' understanding of psychotropic medications, as well as family members and paid carers, and how this understanding can be improved.
Results
Twenty-one journal articles were included. Lack of understanding of medication was universal, with participants often unaware of adverse effects, alternatives, and rights around medication. There was also a lack of involvement in decision making for all participants. Some interventions aimed at people with intellectual disabilities or paid carers helped to improve knowledge.
Conclusion
Evaluating how best to improve psychotropic medication understanding for people with intellectual disabilities, family members and paid carers should be a focus for future research.
{"title":"What do people with intellectual disabilities, their family members and paid carers understand about psychotropic medication? A rapid review","authors":"Dawn E. Cavanagh, Sue Caton, Jodie Rawles, Katherine Runswick-Cole, Chris Hatton, Umesh Chauhan, Christine Hutchinson","doi":"10.1111/jar.13283","DOIUrl":"10.1111/jar.13283","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities are more likely to be prescribed psychotropic medication than the general population and are frequently prescribed multiple medications. Understanding people with intellectual disabilities and carer perspectives is essential to improving the quality of psychotropic medication prescribing and usage.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A rapid review explored people with intellectual disabilities' understanding of psychotropic medications, as well as family members and paid carers, and how this understanding can be improved.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Twenty-one journal articles were included. Lack of understanding of medication was universal, with participants often unaware of adverse effects, alternatives, and rights around medication. There was also a lack of involvement in decision making for all participants. Some interventions aimed at people with intellectual disabilities or paid carers helped to improve knowledge.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Evaluating how best to improve psychotropic medication understanding for people with intellectual disabilities, family members and paid carers should be a focus for future research.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-07-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13283","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141749920","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Background
The present study examines the relationship between stereotypical beliefs about people with intellectual disabilities, desire for social distance, and general knowledge about human sexuality with attitudes towards the sexuality of adults with mild intellectual disabilities.
Method
Two hundred fifty participants from staff, family and community samples completed an online set of questionnaires.
Results
Higher agreement with stereotypical beliefs and lower sexual knowledge were associated with less normalising and more paternalistic attitudes towards the sexuality of adults with mild intellectual disabilities. Higher agreement with stereotypical beliefs was also associated with more negative attitudes. On the other hand, willingness to interact with these adults was associated with more normalising and less paternalistic attitudes.
Conclusions
Interventions that aim to support adults with intellectual disabilities in relation to their sexuality should also address the perceptions of their support network towards them as individuals with disabilities, as well as their knowledge about sexuality.
{"title":"The relationship of stereotypes, social distance and sexuality knowledge with attitudes towards sexuality of people with mild intellectual disabilities","authors":"Ana Belén Correa, Ángel Castro, María Dolores Gil-Llario","doi":"10.1111/jar.13276","DOIUrl":"10.1111/jar.13276","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The present study examines the relationship between stereotypical beliefs about people with intellectual disabilities, desire for social distance, and general knowledge about human sexuality with attitudes towards the sexuality of adults with mild intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Two hundred fifty participants from staff, family and community samples completed an online set of questionnaires.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Higher agreement with stereotypical beliefs and lower sexual knowledge were associated with less normalising and more paternalistic attitudes towards the sexuality of adults with mild intellectual disabilities. Higher agreement with stereotypical beliefs was also associated with more negative attitudes. On the other hand, willingness to interact with these adults was associated with more normalising and less paternalistic attitudes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Interventions that aim to support adults with intellectual disabilities in relation to their sexuality should also address the perceptions of their support network towards them as individuals with disabilities, as well as their knowledge about sexuality.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13276","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141621864","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Measurement instruments to understand self-determined motivation towards physical activity among college students with intellectual disabilities are needed to develop programs to support physical and psychological health and well-being. The purpose of the current study was to validate a modified questionnaire measuring basic psychological needs towards physical activity among college students with intellectual disabilities.
Methods
A total of 108 college students with intellectual disabilities completed the modified questionnaire. Validity and reliability of the questionnaire was examined.
Results
Confirmatory factor analysis demonstrated a six-factor model had good model fit. Cronbach's alpha values showed acceptable reliability evidence of the instrument as a whole, although some alpha values in subdomains of the instrument were below acceptable values.
Conclusion
The modified questionnaire was found to have acceptable validity evidence. Further studies are needed with refinement of answer options and the addition of more questions to increase reliability.
{"title":"Measurement of basic psychological needs for physical activity participation for college students with intellectual disabilities: A validation study","authors":"Myung Ha Sur, Deborah R. Shapiro, Hongli Li","doi":"10.1111/jar.13246","DOIUrl":"10.1111/jar.13246","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Measurement instruments to understand self-determined motivation towards physical activity among college students with intellectual disabilities are needed to develop programs to support physical and psychological health and well-being. The purpose of the current study was to validate a modified questionnaire measuring basic psychological needs towards physical activity among college students with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A total of 108 college students with intellectual disabilities completed the modified questionnaire. Validity and reliability of the questionnaire was examined.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Confirmatory factor analysis demonstrated a six-factor model had good model fit. Cronbach's alpha values showed acceptable reliability evidence of the instrument as a whole, although some alpha values in subdomains of the instrument were below acceptable values.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The modified questionnaire was found to have acceptable validity evidence. Further studies are needed with refinement of answer options and the addition of more questions to increase reliability.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13246","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141565296","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Kumaresan Cithambaram, D. Corby, Shankar Shanmugam Rajendran
Background
India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India.
Methods
A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach.
Results
The synthesis found five themes representing family carers' experiences and perspectives. These were ‘resilience and acceptance’, ‘parental response’, ‘care dynamic’, ‘preparing for transition to adulthood’ and ‘parental advocacy’.
Conclusion
Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences.
{"title":"Experiences of family carers in providing care to children with intellectual disabilities in India: A qualitative evidence synthesis","authors":"Kumaresan Cithambaram, D. Corby, Shankar Shanmugam Rajendran","doi":"10.1111/jar.13269","DOIUrl":"10.1111/jar.13269","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The synthesis found five themes representing family carers' experiences and perspectives. These were ‘resilience and acceptance’, ‘parental response’, ‘care dynamic’, ‘preparing for transition to adulthood’ and ‘parental advocacy’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13269","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141560408","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Alison Greene, Mika Baugh, Catherine Sherwood-Laughlin, Lisa Greathouse, Jordyn Galyan, Ivanka Simic Stanjovic, Dechen Sangmo, Kristen Jozkowski, Melissa Dubie, Angela Chow
Background
Tailored sexuality education for adolescents with intellectual and developmental disabilities is a crucial, yet unmet, need as this population is particularly at risk for sexual abuse and victimisation. However, there are no evidence-based interventions to specifically address this need. This paper presents the development of an intervention framework to address equity in sexuality education and support adolescents with intellectual and developmental disabilities to understand and provide sexual consent, a foundational aspect of sexuality education and sexual health.
Methods
The Sexual Health Equity Project team used a Community-Based Participatory Research approach to develop a four-module sexual consent intervention for adolescents with intellectual and developmental disabilities. We leveraged a diverse, interdisciplinary team in a suburban Midwestern school district, and used Backward Design to create objectives and assessments which were rooted in findings from qualitative data by special education teachers.
Results
The resulting sexual consent intervention, Ask Me First—Choices, is comprised of four modules covering topics including definition of sexual consent; decision-making strategies and practice; communicating consent and refusal, identifying situations of consent and non-consent; and legal issues surrounding consent. Each module is divided into five components for content delivery: (1) introduction, (2) lecture, (3) supplemental activity, (4) assessment, and (5) conclusion. We detail the intervention's unique aspects, emphasising areas where we used Universal Design for Learning principles to support teachers' instruction and students' learning.
Conclusion
Our efforts to create a sexual consent intervention directly address sexuality education equity issues. We offer commentary on our design process and decisions, as well as recommendations for future groups who want to develop sexual health interventions in similar contexts for students with intellectual and developmental disabilities. Next steps include further testing and validation of the sexual consent intervention to build the evidence-base of sexuality education for adolescents with intellectual and developmental disabilities.
{"title":"Development of a sexual consent intervention for adolescents with intellectual and developmental disabilities","authors":"Alison Greene, Mika Baugh, Catherine Sherwood-Laughlin, Lisa Greathouse, Jordyn Galyan, Ivanka Simic Stanjovic, Dechen Sangmo, Kristen Jozkowski, Melissa Dubie, Angela Chow","doi":"10.1111/jar.13272","DOIUrl":"10.1111/jar.13272","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Tailored sexuality education for adolescents with intellectual and developmental disabilities is a crucial, yet unmet, need as this population is particularly at risk for sexual abuse and victimisation. However, there are no evidence-based interventions to specifically address this need. This paper presents the development of an intervention framework to address equity in sexuality education and support adolescents with intellectual and developmental disabilities to understand and provide sexual consent, a foundational aspect of sexuality education and sexual health.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The Sexual Health Equity Project team used a Community-Based Participatory Research approach to develop a four-module sexual consent intervention for adolescents with intellectual and developmental disabilities. We leveraged a diverse, interdisciplinary team in a suburban Midwestern school district, and used Backward Design to create objectives and assessments which were rooted in findings from qualitative data by special education teachers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The resulting sexual consent intervention, <i>Ask Me First—Choices</i>, is comprised of four modules covering topics including definition of sexual consent; decision-making strategies and practice; communicating consent and refusal, identifying situations of consent and non-consent; and legal issues surrounding consent. Each module is divided into five components for content delivery: (1) introduction, (2) lecture, (3) supplemental activity, (4) assessment, and (5) conclusion. We detail the intervention's unique aspects, emphasising areas where we used Universal Design for Learning principles to support teachers' instruction and students' learning.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Our efforts to create a sexual consent intervention directly address sexuality education equity issues. We offer commentary on our design process and decisions, as well as recommendations for future groups who want to develop sexual health interventions in similar contexts for students with intellectual and developmental disabilities. Next steps include further testing and validation of the sexual consent intervention to build the evidence-base of sexuality education for adolescents with intellectual and developmental disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13272","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141536085","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Nienke M. Siebelink, Annemarije Gaasterland, Marieke Gielissen, Sanne van der Weegen, Brigitte Boon, Agnes van der Poel
Background
Implementation issues often hinder reaching the potential of care technology to improve daily lives of people with intellectual disabilities. We investigated barriers to and facilitators of implementing different technology modalities (app/social robot/sensor/domotics) in long-term care.
Method
Care professionals (N = 83) from 12 Dutch disability care organisations completed a customised measurement instrument for determinants of innovations (MIDI) questionnaire.
Results
Out of 27 determinants, 20 were identified as facilitators and 16 as barriers. We highlight common barriers: few colleagues who work with the technology; no (awareness of) formal ratification of technology use; no arrangements regarding turnover of staff using the technology; unsettling organisational changes; technological defects and limited IT preconditions.
Conclusions
The results, which could be combined and compared across study sites, provide insight into which implementation determinants were already well addressed, and where there is ground to gain when implementing care technology in disability care organisations.
{"title":"Barriers and facilitators influencing implementation of care technology for people with intellectual disabilities: A cross-sectional study among care professionals","authors":"Nienke M. Siebelink, Annemarije Gaasterland, Marieke Gielissen, Sanne van der Weegen, Brigitte Boon, Agnes van der Poel","doi":"10.1111/jar.13262","DOIUrl":"10.1111/jar.13262","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Implementation issues often hinder reaching the potential of care technology to improve daily lives of people with intellectual disabilities. We investigated barriers to and facilitators of implementing different technology modalities (app/social robot/sensor/domotics) in long-term care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Care professionals (<i>N</i> = 83) from 12 Dutch disability care organisations completed a customised measurement instrument for determinants of innovations (MIDI) questionnaire.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Out of 27 determinants, 20 were identified as facilitators and 16 as barriers. We highlight common barriers: few colleagues who work with the technology; no (awareness of) formal ratification of technology use; no arrangements regarding turnover of staff using the technology; unsettling organisational changes; technological defects and limited IT preconditions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The results, which could be combined and compared across study sites, provide insight into which implementation determinants were already well addressed, and where there is ground to gain when implementing care technology in disability care organisations.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13262","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141473272","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Peter Mullhall, Laurence Taggart, Gary McDermott, Paul Slater, Ben Fitzpatrick, Marie H. Murphy, Angela Hassiotis, Anne Johnston
Background
Children with intellectual disability are less physically active and more sedentary than typically developing peers. To date no studies have tested the feasibility of a school-based walking intervention for children with Intellectual Disability.
Method
A clustered randomised controlled trial (cRCT), with an embedded process evaluation, was used to test the feasibility of a school-based walking intervention. Eight schools (n = 161 pupils aged 9–13 years) were randomised into either an intervention arm or an ‘exercise as usual’ arm. Measures included physical activity, physical fitness and emotional wellbeing. Baseline and 3-month follow-up data were collected.
Results
The ‘Walk Buds’ intervention was found to be acceptable to teaching staff and pupils, with an uptake rate of the walking sessions offered of 84%.
Conclusion
A number of challenges were experienced, relating to the COVID-19 pandemic, and difficulties collecting accelerometer data. Barriers, facilitators and required changes identified through the mixed methods process evaluation are discussed.
{"title":"‘Walk Buds’: A walking intervention to increase physical activity, physical fitness, and emotional wellbeing, in 9–13 year old children with intellectual disabilities. Results of a clustered randomised feasibility trial","authors":"Peter Mullhall, Laurence Taggart, Gary McDermott, Paul Slater, Ben Fitzpatrick, Marie H. Murphy, Angela Hassiotis, Anne Johnston","doi":"10.1111/jar.13260","DOIUrl":"10.1111/jar.13260","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with intellectual disability are less physically active and more sedentary than typically developing peers. To date no studies have tested the feasibility of a school-based walking intervention for children with Intellectual Disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A clustered randomised controlled trial (cRCT), with an embedded process evaluation, was used to test the feasibility of a school-based walking intervention. Eight schools (<i>n</i> = 161 pupils aged 9–13 years) were randomised into either an intervention arm or an ‘exercise as usual’ arm. Measures included physical activity, physical fitness and emotional wellbeing. Baseline and 3-month follow-up data were collected.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The ‘Walk Buds’ intervention was found to be acceptable to teaching staff and pupils, with an uptake rate of the walking sessions offered of 84%.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>A number of challenges were experienced, relating to the COVID-19 pandemic, and difficulties collecting accelerometer data. Barriers, facilitators and required changes identified through the mixed methods process evaluation are discussed.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13260","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141473275","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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