A. Cashin, A. Pracilio, T. Buckley, K. Griffin, J. Trollor, N. J. Wilson
Background
Health outcomes of people with Autism Spectrum Disorder and/or Intellectual Disability are poor. Yet there is a paucity of nurse education and preparation to care for people with Autism Spectrum Disorder and Intellectual Disability.
Method
A cross sectional survey of Australian Registered Nurses related to their educational experience, awareness of the national disability support scheme and the concept of making reasonable adjustments.
Results
The majority of Australian Registered Nurses did not experience undergraduate content related to caring for people with Autism Spectrum Disorder and/or Intellectual Disability. Few participants experienced a dedicated clinical placement. Just over one half of the participants were aware of reasonable adjustments. Continuing professional education was significantly related to a greater awareness of reasonable adjustments and less ambivalence.
Conclusion
Education plays a key role in promoting awareness and reducing ambivalence. Education focussed on understanding the diversity in the particular types of neurodiversity is particularly efficacious.
{"title":"Australian Registered Nurse's' Awareness of Key Issues, Ambivalence and Education Related to the Health of People With Intellectual Disability and/or Autism","authors":"A. Cashin, A. Pracilio, T. Buckley, K. Griffin, J. Trollor, N. J. Wilson","doi":"10.1111/jar.70016","DOIUrl":"10.1111/jar.70016","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Health outcomes of people with Autism Spectrum Disorder and/or Intellectual Disability are poor. Yet there is a paucity of nurse education and preparation to care for people with Autism Spectrum Disorder and Intellectual Disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A cross sectional survey of Australian Registered Nurses related to their educational experience, awareness of the national disability support scheme and the concept of making reasonable adjustments.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The majority of Australian Registered Nurses did not experience undergraduate content related to caring for people with Autism Spectrum Disorder and/or Intellectual Disability. Few participants experienced a dedicated clinical placement. Just over one half of the participants were aware of reasonable adjustments. Continuing professional education was significantly related to a greater awareness of reasonable adjustments and less ambivalence.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Education plays a key role in promoting awareness and reducing ambivalence. Education focussed on understanding the diversity in the particular types of neurodiversity is particularly efficacious.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11772910/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143054372","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}
This study examines stigma and self-stigma towards individuals with intellectual disabilities among university students, focusing on cognitive, emotional and behavioural dimensions. It highlights the negative impact on social inclusion and the importance of educational interventions.
Methods
A quantitative pre-/post-test design with a control group assessed stigma towards intellectual disabilities. Differences based on the presence of intellectual disabilities and the effectiveness of an anti-stigma intervention was evaluated using the Goratu questionnaire.
Results
No significant gender differences in stigma levels were found. Students with intellectual disabilities showed significantly higher stigma levels compared to their peers without disabilities. The anti-stigma intervention improved attitudes in the experimental group versus the control group.
Conclusions
Findings support the efficacy of educational interventions in reducing stigma and promoting inclusive attitudes. Despite limitations like potential social desirability bias, this research offers valuable insights for policymakers and educators to enhance social inclusion and reduce stigma.
{"title":"Inclusive Education for University Students With and Without Intellectual Disabilities: Effectiveness of an Anti-Stigma Intervention","authors":"Álvaro Moraleda Ruano, Diana Ruiz Vicente, Joanne Mampaso Desbrow, Diego Galán-Casado","doi":"10.1111/jar.70012","DOIUrl":"10.1111/jar.70012","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study examines stigma and self-stigma towards individuals with intellectual disabilities among university students, focusing on cognitive, emotional and behavioural dimensions. It highlights the negative impact on social inclusion and the importance of educational interventions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A quantitative pre-/post-test design with a control group assessed stigma towards intellectual disabilities. Differences based on the presence of intellectual disabilities and the effectiveness of an anti-stigma intervention was evaluated using the Goratu questionnaire.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>No significant gender differences in stigma levels were found. Students with intellectual disabilities showed significantly higher stigma levels compared to their peers without disabilities. The anti-stigma intervention improved attitudes in the experimental group versus the control group.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Findings support the efficacy of educational interventions in reducing stigma and promoting inclusive attitudes. Despite limitations like potential social desirability bias, this research offers valuable insights for policymakers and educators to enhance social inclusion and reduce stigma.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143034809","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Kady F. Sternberg, Joanna G. Cloutier, Kaitlyn Ahlers, Christina Moore, Kathleen A. Koth, Takahiro Soda, Narpinder Kaur Malhi, Shikha Verma, Lisa C. Yeh, Jennifer L. McLaren
Background
Little research has been conducted solely exploring gender diversity in people with intellectual disabilities. This review explores the literature, discusses the prevalence, and identifies clinical best practices for people at the intersection of gender diversity and intellectual disability.
Method
A scoping review was conducted utilising PRISMA methodology of the following databases: PubMed, CINAHL Complete (EBSCO), Cochrane Library (Wiley), Dissertations & Theses Global (ProQuest), PsycInfo (EBSCO), Scopus and Web of Science.
Results
Five hundred seventy five titles and abstracts were screened, 61 full-text articles were reviewed and 17 met inclusion criteria. Four major themes were identified: prevalence, trauma and co-occurring mental health disorders, barriers to care and best practices.
Conclusion
This review highlights the lack of research and provides valuable insight into the experiences of people with gender diversity and intellectual disability. Further research is needed to understand the prevalence and explore the intersection and experience of gender-diverse people with intellectual disabilities.
{"title":"Exploring the Intersection of Gender Diversity and Intellectual Disability: A Scoping Review With a Focus on Clinical Care","authors":"Kady F. Sternberg, Joanna G. Cloutier, Kaitlyn Ahlers, Christina Moore, Kathleen A. Koth, Takahiro Soda, Narpinder Kaur Malhi, Shikha Verma, Lisa C. Yeh, Jennifer L. McLaren","doi":"10.1111/jar.70010","DOIUrl":"10.1111/jar.70010","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Little research has been conducted solely exploring gender diversity in people with intellectual disabilities. This review explores the literature, discusses the prevalence, and identifies clinical best practices for people at the intersection of gender diversity and intellectual disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A scoping review was conducted utilising PRISMA methodology of the following databases: PubMed, CINAHL Complete (EBSCO), Cochrane Library (Wiley), Dissertations & Theses Global (ProQuest), PsycInfo (EBSCO), Scopus and Web of Science.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Five hundred seventy five titles and abstracts were screened, 61 full-text articles were reviewed and 17 met inclusion criteria. Four major themes were identified: prevalence, trauma and co-occurring mental health disorders, barriers to care and best practices.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>This review highlights the lack of research and provides valuable insight into the experiences of people with gender diversity and intellectual disability. Further research is needed to understand the prevalence and explore the intersection and experience of gender-diverse people with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-01-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143025933","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Esther H. Bisschops, Noud Frielink, J. Clasien de Schipper, Carlo Schuengel, Petri J. C. M. Embregts
Background
The Needs Assessment Framework (NAF) stimulates awareness of care staff to consider perspectives of clients with intellectual disabilities in decisions on involuntary care. We explored the effect of implementers' participation in a Virtual Community-of-Practice (VCoP) for designing implementation plans, on NAF implementation and staff awareness.
Method
A quasi-experimental design was used to compare implementation and awareness by care staff (n = 54) between organisations that implemented NAF with VCoP participation (N = 4) and organisations that implemented NAF as usual (N = 3). The ItFits toolkit work routine in the VCoP was qualitatively analysed to understand choices regarding implementation plans.
Results
No statistical differences in implementation and awareness among care staff were found between the intervention and control groups. Implementers evaluated collaboration on implementation and the ItFits toolkit as helpful.
Conclusions
Evaluation of implementation effectiveness and process are both needed to offer unique insights for iteratively changing daily practice around involuntary care.
{"title":"Evaluating a Virtual Community-of-Practice as Implementation Strategy for the Needs Assessment Framework in Intellectual Disability Care: A Quasi-Experimental Multi-Methods Study","authors":"Esther H. Bisschops, Noud Frielink, J. Clasien de Schipper, Carlo Schuengel, Petri J. C. M. Embregts","doi":"10.1111/jar.70007","DOIUrl":"10.1111/jar.70007","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The Needs Assessment Framework (NAF) stimulates awareness of care staff to consider perspectives of clients with intellectual disabilities in decisions on involuntary care. We explored the effect of implementers' participation in a Virtual Community-of-Practice (VCoP) for designing implementation plans, on NAF implementation and staff awareness.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A quasi-experimental design was used to compare implementation and awareness by care staff (<i>n =</i> 54) between organisations that implemented NAF with VCoP participation (<i>N =</i> 4) and organisations that implemented NAF as usual (<i>N =</i> 3). The ItFits toolkit work routine in the VCoP was qualitatively analysed to understand choices regarding implementation plans.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>No statistical differences in implementation and awareness among care staff were found between the intervention and control groups. Implementers evaluated collaboration on implementation and the ItFits toolkit as helpful.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Evaluation of implementation effectiveness and process are both needed to offer unique insights for iteratively changing daily practice around involuntary care.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-01-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11742692/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143017501","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}
The impact of having a disabled brother or sister on siblings' psychological well-being and sibling relationships has been the subject of several research studies. However, research which focuses on the relationship between siblings and their autistic brother or sister with an intellectual disability and complex care needs is rare. We explored siblings' views and experiences of their sibling relationship with their autistic brother or sister with complex care needs.
Method
Eleven children and early adolescents (4 male/7 female) between the ages of 8 and 14 years took part in semi-structured interviews with questions focussing on their relationship with their autistic brother or sister who had complex care needs. Reflexive thematic analysis was used as a guide to analyse the data.
Results
Four themes are presented: positive interactions bring joy, sibling conflict is driven by verbal interactions, behaviours may have different meanings for the sibling, perceptions of change in the sibling relationship.
Conclusions
The siblings of autistic brothers and sisters with an intellectual disability and complex care needs described warmth and positivity. Siblings of autistic children, who have complex care needs, deeply valued their interactions with their brother or sister despite reciprocity being on their terms. When autistic brothers and sisters had some functional spoken language, this often changed the context for the siblings relationship; perhaps leading to an increased chance of conflict or perceived negative experiences. These findings highlight the importance of understanding the individual meaning of these sibling relationships.
{"title":"‘It Feels Very Weird and Normal at the Same Time’: Sibling Perceptions of Their Relationships With an Autistic Brother or Sister With Complex Care Needs","authors":"Louise Rixon, Richard P. Hastings, Hanna Kovshoff","doi":"10.1111/jar.70009","DOIUrl":"10.1111/jar.70009","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The impact of having a disabled brother or sister on siblings' psychological well-being and sibling relationships has been the subject of several research studies. However, research which focuses on the relationship between siblings and their autistic brother or sister with an intellectual disability and complex care needs is rare. We explored siblings' views and experiences of their sibling relationship with their autistic brother or sister with complex care needs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Eleven children and early adolescents (4 male/7 female) between the ages of 8 and 14 years took part in semi-structured interviews with questions focussing on their relationship with their autistic brother or sister who had complex care needs. Reflexive thematic analysis was used as a guide to analyse the data.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Four themes are presented: positive interactions bring joy, sibling conflict is driven by verbal interactions, behaviours may have different meanings for the sibling, perceptions of change in the sibling relationship.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The siblings of autistic brothers and sisters with an intellectual disability and complex care needs described warmth and positivity. Siblings of autistic children, who have complex care needs, deeply valued their interactions with their brother or sister despite reciprocity being on their terms. When autistic brothers and sisters had some functional spoken language, this often changed the context for the siblings relationship; perhaps leading to an increased chance of conflict or perceived negative experiences. These findings highlight the importance of understanding the individual meaning of these sibling relationships.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11736244/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143017515","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}
Anthony Dujmovic-Bračak, Alisa D. Blazek, Emily M. Post, Jacqueline D. Goodway, Carmen B. Swain
Introduction
Sedentary behaviour among individuals with intellectual disabilities, driven by barriers such as limited access to adapted programs and low self-efficacy, contributes to chronic health conditions. This study evaluates the effectiveness of the Valemee Visual System (VVS), a novel tool offering visual support and structured exercise programming, in improving physical fitness and promoting exercise independence in this population.
Methods
A repeated measures design was employed with an 8-week intervention involving 22 participants aged 22–44 with mild to moderate intellectual disabilities. The program utilised the VVS for total body fitness training.
Results
Participants demonstrated significant improvements in grip strength, sit-to-stand performance, bench press capacity, 400-m walk time, and flexibility. Self-efficacy increased, and reduced reliance on prompts indicated greater exercise independence and autonomy.
Conclusions
The VVS shows promise in enhancing physical fitness, accessibility, and adherence in adults with intellectual disabilities, supporting long-term health and reducing chronic disease risk.
{"title":"The Valemee Visual System Helps Reduce Risk for Chronic Illness by Promoting Physical Fitness, Self-Efficacy and Independence in Adults With Intellectual Disabilities","authors":"Anthony Dujmovic-Bračak, Alisa D. Blazek, Emily M. Post, Jacqueline D. Goodway, Carmen B. Swain","doi":"10.1111/jar.70011","DOIUrl":"10.1111/jar.70011","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Sedentary behaviour among individuals with intellectual disabilities, driven by barriers such as limited access to adapted programs and low self-efficacy, contributes to chronic health conditions. This study evaluates the effectiveness of the Valemee Visual System (VVS), a novel tool offering visual support and structured exercise programming, in improving physical fitness and promoting exercise independence in this population.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A repeated measures design was employed with an 8-week intervention involving 22 participants aged 22–44 with mild to moderate intellectual disabilities. The program utilised the VVS for total body fitness training.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Participants demonstrated significant improvements in grip strength, sit-to-stand performance, bench press capacity, 400-m walk time, and flexibility. Self-efficacy increased, and reduced reliance on prompts indicated greater exercise independence and autonomy.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The VVS shows promise in enhancing physical fitness, accessibility, and adherence in adults with intellectual disabilities, supporting long-term health and reducing chronic disease risk.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11730804/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142980920","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}
The current literature has established that prejudice in child protection cases with parents with intellectual disabilities continues to persist. However, complexities of these cases are not well-understood from the perspective of child protection workers. This study aimed to identify the needs of child protection workers and their views on factors that influence supports for parents with intellectual disabilities.
Method
This qualitative study conducted semistructured interviews with child protection workers who have worked directly with parents with intellectual disabilities across five child protective agencies in three regions in Ontario, Canada (n = 11).
Results
Three major themes emerged after content analysis of interviews: (1) training and support needs of child protection workers; (2) key sources of support for parents; and (3) intersecting factors impacting decision-making.
Conclusion
Social service agencies continue to be fragmented and better coordination across agencies is needed to meet the cross-sectoral needs of parents with intellectual disabilities.
{"title":"‘I Don't Think I Have Ever Worked Harder on a Case’: Needs of Canadian Child Protection Workers and Parents With Intellectual Disabilities","authors":"Munazza Tahir, Virginie Cobigo","doi":"10.1111/jar.70006","DOIUrl":"10.1111/jar.70006","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The current literature has established that prejudice in child protection cases with parents with intellectual disabilities continues to persist. However, complexities of these cases are not well-understood from the perspective of child protection workers. This study aimed to identify the needs of child protection workers and their views on factors that influence supports for parents with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This qualitative study conducted semistructured interviews with child protection workers who have worked directly with parents with intellectual disabilities across five child protective agencies in three regions in Ontario, Canada (<i>n</i> = 11).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three major themes emerged after content analysis of interviews: (1) training and support needs of child protection workers; (2) key sources of support for parents; and (3) intersecting factors impacting decision-making.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Social service agencies continue to be fragmented and better coordination across agencies is needed to meet the cross-sectoral needs of parents with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11729718/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142980919","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}
Angus Y. K. Lam, Matthew K. S. Yau, Richard C. Franklin, Peter A. Leggat
Background
Sexual well-being significantly impacts the overall quality of life for individuals with and without intellectual disabilities. Notably, parents play a pivotal role in influencing their children's sexual development, and their attitudes towards this topic are shaped by Chinese sociocultural values.
Methods
This study employed Interpretative phenomenological analysis to explore the experiences and attitudes of five individuals with intellectual disabilities and seven parents/caregivers regarding the sexual needs of their adult offspring with intellectual disabilities.
Results
The findings revealed participants' experiences and concerns, often navigating the challenges posed by traditional Chinese cultural restrictions through responses characterised as ‘Silent’ (avoidance of discussion) and ‘Weep’ (deep-seated psycho-emotional burden).
Conclusions
This research emphasises the importance of a pluralistic society and advocates for promoting sexual autonomy among individuals with intellectual disabilities. The findings have implications for future practises and highlight the need for a more inclusive and compassionate approach to their sexual well-being.
{"title":"Expressing Sexuality in Silent and Weep: Experience of Chinese People With Intellectual Disabilities and Parents","authors":"Angus Y. K. Lam, Matthew K. S. Yau, Richard C. Franklin, Peter A. Leggat","doi":"10.1111/jar.70008","DOIUrl":"10.1111/jar.70008","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Sexual well-being significantly impacts the overall quality of life for individuals with and without intellectual disabilities. Notably, parents play a pivotal role in influencing their children's sexual development, and their attitudes towards this topic are shaped by Chinese sociocultural values.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study employed Interpretative phenomenological analysis to explore the experiences and attitudes of five individuals with intellectual disabilities and seven parents/caregivers regarding the sexual needs of their adult offspring with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The findings revealed participants' experiences and concerns, often navigating the challenges posed by traditional Chinese cultural restrictions through responses characterised as ‘Silent’ (avoidance of discussion) and ‘Weep’ (deep-seated psycho-emotional burden).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This research emphasises the importance of a pluralistic society and advocates for promoting sexual autonomy among individuals with intellectual disabilities. The findings have implications for future practises and highlight the need for a more inclusive and compassionate approach to their sexual well-being.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-01-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11733526/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143056164","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}
The Welfare Reform Act (2012) has been criticised for harming claimants, particularly through functional assessments. Although many people with intellectual disabilities in the UK receive welfare benefits, their experiences of undergoing functional assessments are under-researched.
Method
Eight participants with intellectual disabilities were interviewed about experiences of welfare assessment. Transcripts were analysed qualitatively using interpretative phenomenological analysis.
Results
Analysis suggested five group experiential themes: ‘Living in fear: I was nervous and scared’; ‘The system is marginalising: Other people are better than me’; ‘Relationship with the assessor: His attitude fucking stunk’; ‘Others as a safe base: Someone there that you know, and you trust’; and ‘Responding with empowerment: That's where I really shined’.
Conclusions
People with intellectual disabilities experience functional assessments as scary and oppressive. Assessment reinforced the stigma associated with having an intellectual disability and, to a lesser extent, claiming benefits. Individual, structural and policy levels interventions are discussed.
{"title":"“They Don't Understand People With Learning Disabilities”: Exploring the Experiences of People With Intellectual Disabilities Undergoing Welfare Assessments","authors":"Bethan Ward, Ste Weatherhead, Beth Greenhill","doi":"10.1111/jar.70000","DOIUrl":"10.1111/jar.70000","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The Welfare Reform Act (2012) has been criticised for harming claimants, particularly through functional assessments. Although many people with intellectual disabilities in the UK receive welfare benefits, their experiences of undergoing functional assessments are under-researched.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Eight participants with intellectual disabilities were interviewed about experiences of welfare assessment. Transcripts were analysed qualitatively using interpretative phenomenological analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Analysis suggested five group experiential themes: ‘Living in fear: I was nervous and scared’; ‘The system is marginalising: Other people are better than me’; ‘Relationship with the assessor: His attitude fucking stunk’; ‘Others as a safe base: Someone there that you know, and you trust’; and ‘Responding with empowerment: That's where I really shined’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>People with intellectual disabilities experience functional assessments as scary and oppressive. Assessment reinforced the stigma associated with having an intellectual disability and, to a lesser extent, claiming benefits. Individual, structural and policy levels interventions are discussed.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-01-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11707405/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142959836","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}
Macey Barratt, Peter Lewis, Natalie Duckworth, Natasha Jojo, Viktorija Malecka, Signe Tomsone, Dita Rituma, Nathan J. Wilson
Background
Parents of children with moderate to profound intellectual disabilities play a crucial role in providing direct care but often demonstrate heightened parental stress and reduced quality of life. This review explores perceived quality of life from the experiences of parents when caring for young and adult children.
Method
A qualitative systematic review following Joanna Briggs Institute meta-aggregation approach has been completed and reported according to PRISMA guidelines.
Findings
Seventeen qualitative studies were included. Three synthesised findings were identified: ‘Challenges and rewards of being a parent carer’, ‘The real cost of caregiver burden’ and ‘Surrendering self for duty – the mothers role’.
Conclusion
Parents of children with moderate to profound intellectual disabilities reported diminished quality of life for themselves and their families, experiencing increased physical and mental health issues associated with caregiving burdens. Future research is needed that determine what effective support systems and interventions are needed to alleviate parental caregiver burden.
{"title":"Parental Experiences of Quality of Life When Caring for Their Children With Intellectual Disability: A Meta-Aggregation Systematic Review","authors":"Macey Barratt, Peter Lewis, Natalie Duckworth, Natasha Jojo, Viktorija Malecka, Signe Tomsone, Dita Rituma, Nathan J. Wilson","doi":"10.1111/jar.70005","DOIUrl":"10.1111/jar.70005","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Parents of children with moderate to profound intellectual disabilities play a crucial role in providing direct care but often demonstrate heightened parental stress and reduced quality of life. This review explores perceived quality of life from the experiences of parents when caring for young and adult children.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A qualitative systematic review following Joanna Briggs Institute meta-aggregation approach has been completed and reported according to PRISMA guidelines.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Seventeen qualitative studies were included. Three synthesised findings were identified: ‘Challenges and rewards of being a parent carer’, ‘The real cost of caregiver burden’ and ‘Surrendering self for duty – the mothers role’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Parents of children with moderate to profound intellectual disabilities reported diminished quality of life for themselves and their families, experiencing increased physical and mental health issues associated with caregiving burdens. Future research is needed that determine what effective support systems and interventions are needed to alleviate parental caregiver burden.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11724350/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142959837","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}
扫码关注我们
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号