People with intellectual disability face numerous barriers to accessing basic preventative health care. This study documents the protocol, process and health outcomes of a multidisciplinary hospital-based Health Care Access Service providing pre-procedure sedation and general anaesthesia for adults with moderate to profound intellectual disability and complexity.
Method
In this retrospective quality assurance study, development of the protocol, procedures and outcomes (demographic data, procedures performed and health outcomes) are presented for all patients from commencement of the service for the first 8 month period.
Results
Ten people received the service over this time (8 males, 2 females; mean age 30.2 years). Investigation results identified a range of health conditions which are now being appropriately managed. A case study illustrates the process of implementing the protocol, procedures and outcomes, illustrating person-centred and trauma-informed approaches.
Conclusions
Service design considerations are discussed from a human rights perspective for future implementation efforts.
{"title":"Access to Health Care: Implementation and Outcomes of a Hospital-Based Anaesthesia Protocol for People With Intellectual Disability","authors":"Michelle Bellon, Farima Forooziya, Rodney Mitchell, Sharon Liberali, Monica Welsh, Paul Jones, Stephanie Searle","doi":"10.1111/jar.70100","DOIUrl":"https://doi.org/10.1111/jar.70100","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disability face numerous barriers to accessing basic preventative health care. This study documents the protocol, process and health outcomes of a multidisciplinary hospital-based Health Care Access Service providing pre-procedure sedation and general anaesthesia for adults with moderate to profound intellectual disability and complexity.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>In this retrospective quality assurance study, development of the protocol, procedures and outcomes (demographic data, procedures performed and health outcomes) are presented for all patients from commencement of the service for the first 8 month period.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Ten people received the service over this time (8 males, 2 females; mean age 30.2 years). Investigation results identified a range of health conditions which are now being appropriately managed. A case study illustrates the process of implementing the protocol, procedures and outcomes, illustrating person-centred and trauma-informed approaches.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Service design considerations are discussed from a human rights perspective for future implementation efforts.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70100","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144681217","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}
Kasey Fullwood, Andrew Collaro, Lachlan Power, Jasneek Chawla
Introduction
Children with Down Syndrome are more likely to experience sleep issues throughout their life compared to typically developing children. Sleep difficulties also affect caregivers, who are at increased risk of sleep disturbances, mood disturbances and poorer wellbeing. However, the impact of poor sleep in this cohort of children on their caregivers is not widely understood.
Method
This study assessed the quality of life and mental health in 26 caregivers of children with Down Syndrome and sleep problems through two self-reporting questionnaires.
Results
Results showed caregivers had significantly lower quality of life (QoL) and higher stress scores compared to population norms. A decrease in psychological and physical health scores was associated with higher odds of depression. Similarly, a reduced physical and social health increased the odds of experiencing stress by 50%.
Conclusion
These findings suggest this cohort of families may benefit from increased psychosocial support when addressing sleep problems.
{"title":"Quality of Life and Mental Health in Caregivers of Children With Down Syndrome and Sleep Problems","authors":"Kasey Fullwood, Andrew Collaro, Lachlan Power, Jasneek Chawla","doi":"10.1111/jar.70103","DOIUrl":"https://doi.org/10.1111/jar.70103","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Children with Down Syndrome are more likely to experience sleep issues throughout their life compared to typically developing children. Sleep difficulties also affect caregivers, who are at increased risk of sleep disturbances, mood disturbances and poorer wellbeing. However, the impact of poor sleep in this cohort of children on their caregivers is not widely understood.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This study assessed the quality of life and mental health in 26 caregivers of children with Down Syndrome and sleep problems through two self-reporting questionnaires.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Results showed caregivers had significantly lower quality of life (QoL) and higher stress scores compared to population norms. A decrease in psychological and physical health scores was associated with higher odds of depression. Similarly, a reduced physical and social health increased the odds of experiencing stress by 50%.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>These findings suggest this cohort of families may benefit from increased psychosocial support when addressing sleep problems.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70103","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144673064","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}
Richella Kloppers, Dederieke A. M. Festen, Sandra Mergler
Background
Feeding and swallowing disorders (FSD)-dysphagia are common in adults with intellectual disabilities and frequently overseen by caregivers.
Aim
To determine the clinical factors that are relevant in daily practise associated with FSD in adults with intellectual disabilities.
Method
Cross-sectional data were collected from medical files. In addition, a digital questionnaire was sent to the primary caregiver. Logistic regression analysis was performed on beforehand determined and associated clinical variables.
Results
In total, 106 participants (age 19 to 89) were included, and 54% of these participants were classified as having FSD. Variables positively associated with FSD were increasing mealtime support needs (p = 0.000), coughing (p = 0.004), cramming food (p = 0.027) and having severe-profound intellectual disability (p = 0.001). The use of antipsychotic medication was negatively associated with FSD (p = 0.024).
Conclusion
FSD is common in adults with intellectual disabilities and is associated with mealtime support needs, coughing, cramming food, the severity of intellectual disability, and the use of antipsychotic medication.
{"title":"Feeding and Swallowing Disorder in Adults With Intellectual Disabilities: Associated Factors","authors":"Richella Kloppers, Dederieke A. M. Festen, Sandra Mergler","doi":"10.1111/jar.70092","DOIUrl":"https://doi.org/10.1111/jar.70092","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Feeding and swallowing disorders (FSD)-dysphagia are common in adults with intellectual disabilities and frequently overseen by caregivers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>To determine the clinical factors that are relevant in daily practise associated with FSD in adults with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Cross-sectional data were collected from medical files. In addition, a digital questionnaire was sent to the primary caregiver. Logistic regression analysis was performed on beforehand determined and associated clinical variables.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>In total, 106 participants (age 19 to 89) were included, and 54% of these participants were classified as having FSD. Variables positively associated with FSD were increasing mealtime support needs (<i>p</i> = 0.000), coughing (<i>p</i> = 0.004), cramming food (<i>p</i> = 0.027) and having severe-profound intellectual disability (<i>p</i> = 0.001). The use of antipsychotic medication was negatively associated with FSD (<i>p</i> = 0.024).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>FSD is common in adults with intellectual disabilities and is associated with mealtime support needs, coughing, cramming food, the severity of intellectual disability, and the use of antipsychotic medication.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70092","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144647203","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}
Josien Schaafsma, Annet ten Brug, Annette van der Putten
Introduction
The “Programma Perspectief” intervention aims to provide optimal support to people with profound intellectual and multiple disabilities. Knowledge concerning intervention fidelity is outdated and scarce as is typical for the support of persons with special needs.
Methods
An survey amongst care professionals (n = 62) yielded data on the application of core elements of the intervention (vision, methodical approach, and collaboration) in practise, as well as on implementation barriers and facilitators.
Results
Vision and methodical approach are reflected in practise. A positive association was found between the number of perceived barriers and time since implementation. Over time, more barriers emerged at organisational level.
Conclusions
The results reveal the importance of attending to implementation, even after years. Further research should focus on developing focused implementation strategies to enhance the sustainability of the analysed intervention, thereby guaranteeing the quality of support provided to people with profound intellectual and multiple disabilities.
{"title":"An Ongoing Process: The Implementation of an Intervention for People With Profound Intellectual and Multiple Disabilities Over Time","authors":"Josien Schaafsma, Annet ten Brug, Annette van der Putten","doi":"10.1111/jar.70098","DOIUrl":"https://doi.org/10.1111/jar.70098","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>The “Programma Perspectief” intervention aims to provide optimal support to people with profound intellectual and multiple disabilities. Knowledge concerning intervention fidelity is outdated and scarce as is typical for the support of persons with special needs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>An survey amongst care professionals (<i>n</i> = 62) yielded data on the application of core elements of the intervention (vision, methodical approach, and collaboration) in practise, as well as on implementation barriers and facilitators.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Vision and methodical approach are reflected in practise. A positive association was found between the number of perceived barriers and time since implementation. Over time, more barriers emerged at organisational level.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The results reveal the importance of attending to implementation, even after years. Further research should focus on developing focused implementation strategies to enhance the sustainability of the analysed intervention, thereby guaranteeing the quality of support provided to people with profound intellectual and multiple disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70098","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144635437","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}
Magda M. Apanasionok, Andreas Paris, Joanna Griffin, Richard P. Hastings, Ellie Finch, Debbie Austin, Samantha Flynn
Background
This review explored (1) what digital psychological wellbeing interventions for family carers of people with intellectual and developmental disabilities were reported in the literature, (2) evidence about their effectiveness, (3) factors affecting their implementation and (4) experiences of family carers who attend them.
Methods
Seven databases were searched using search terms related to intellectual and developmental disabilities, carer role, wellbeing and digital delivery formats. Data from 23 studies were synthesised narratively.
Results
Identified interventions were categorised in five broad groups: mind–body, relaxation, mindfulness and acceptance; psychoeducation and support groups; positive thinking and self-compassion; spiritual; and expressive writing. Only 43% of included studies met seven (100%) or six (85%) quality indicators based on the Mixed Methods Appraisal Tool.
Conclusions
There is a developing literature on digital interventions for family carers of people with intellectual and developmental disabilities. Digital supports will likely become more important with continuing technological advances and increasing need.
{"title":"Digital Psychological Wellbeing Interventions for Family Carers of Children and Adults With Intellectual and Developmental Disabilities: A Systematic Review","authors":"Magda M. Apanasionok, Andreas Paris, Joanna Griffin, Richard P. Hastings, Ellie Finch, Debbie Austin, Samantha Flynn","doi":"10.1111/jar.70081","DOIUrl":"https://doi.org/10.1111/jar.70081","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This review explored (1) what digital psychological wellbeing interventions for family carers of people with intellectual and developmental disabilities were reported in the literature, (2) evidence about their effectiveness, (3) factors affecting their implementation and (4) experiences of family carers who attend them.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Seven databases were searched using search terms related to intellectual and developmental disabilities, carer role, wellbeing and digital delivery formats. Data from 23 studies were synthesised narratively.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Identified interventions were categorised in five broad groups: mind–body, relaxation, mindfulness and acceptance; psychoeducation and support groups; positive thinking and self-compassion; spiritual; and expressive writing. Only 43% of included studies met seven (100%) or six (85%) quality indicators based on the Mixed Methods Appraisal Tool.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>There is a developing literature on digital interventions for family carers of people with intellectual and developmental disabilities. Digital supports will likely become more important with continuing technological advances and increasing need.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70081","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144598449","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}
Breast cancer is as frequent in women with intellectual disabilities as the general population, but the mammography uptake rate for women with intellectual disabilities is almost a third lower. This meta-synthesis aimed to explore physical and psychosocial barriers to mammography access for women with intellectual disabilities from the perspectives of the women themselves, healthcare professionals, paid carers and family members.
Method
A systematic search of six databases yielded 12 papers for thematic synthesis review.
Results
Three analytic themes were developed: (i) knowing what to expect; (ii) knowing who will assume responsibility and (iii) making adjustments.
Conclusions
Mammography screening elicits anxiety from both women with intellectual disabilities and their supporters (whether paid, family or healthcare professional). A formulation-based approach to mammography attendance may help to provide tailored information to women with intellectual disabilities, whilst easing the pressures placed upon their support network and healthcare professionals.
{"title":"Exploring Barriers to Mammography Access for Women With Intellectual Disabilities: A Meta-Synthesis of the Perspectives of Four Stakeholder Groups","authors":"Adam Pitt, Suzanne Hodge","doi":"10.1111/jar.70095","DOIUrl":"https://doi.org/10.1111/jar.70095","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Breast cancer is as frequent in women with intellectual disabilities as the general population, but the mammography uptake rate for women with intellectual disabilities is almost a third lower. This meta-synthesis aimed to explore physical and psychosocial barriers to mammography access for women with intellectual disabilities from the perspectives of the women themselves, healthcare professionals, paid carers and family members.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A systematic search of six databases yielded 12 papers for thematic synthesis review.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three analytic themes were developed: (i) knowing what to expect; (ii) knowing who will assume responsibility and (iii) making adjustments.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Mammography screening elicits anxiety from both women with intellectual disabilities and their supporters (whether paid, family or healthcare professional). A formulation-based approach to mammography attendance may help to provide tailored information to women with intellectual disabilities, whilst easing the pressures placed upon their support network and healthcare professionals.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144598713","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}
People with intellectual disability are vulnerable to developing and experiencing pain, indeed more pain, due to comorbidities and secondary conditions. Their pain may also be underestimated or poorly managed, due to difficulties with verbal and non-verbal communication. Improved understanding could have positive implications for pain assessment and management practices.
Method
This systematic review synthesised findings from seven qualitative studies regarding the phenomenon of pain for people with intellectual disability, using a meta-ethnographic approach.
Results
Findings offer different perspectives about the recognition of multiple causes of pain, individual differences in the expression of pain, and decision-making about the assessment and treatment of pain. A tentative model is presented.
Conclusion
There are only a small number of qualitative studies examining this topic. Further research is needed to fully understand pain for people with intellectual disability. Recognition should be given to the impact of wider factors on the pain experience.
{"title":"The Phenomenon of Pain in Adults With Intellectual Disability: A Qualitative Systematic Review","authors":"Alice Trainer, S. J. Summers, Alan Bowman","doi":"10.1111/jar.70093","DOIUrl":"https://doi.org/10.1111/jar.70093","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disability are vulnerable to developing and experiencing pain, indeed more pain, due to comorbidities and secondary conditions. Their pain may also be underestimated or poorly managed, due to difficulties with verbal and non-verbal communication. Improved understanding could have positive implications for pain assessment and management practices.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This systematic review synthesised findings from seven qualitative studies regarding the phenomenon of pain for people with intellectual disability, using a meta-ethnographic approach.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Findings offer different perspectives about the recognition of multiple causes of pain, individual differences in the expression of pain, and decision-making about the assessment and treatment of pain. A tentative model is presented.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>There are only a small number of qualitative studies examining this topic. Further research is needed to fully understand pain for people with intellectual disability. Recognition should be given to the impact of wider factors on the pain experience.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70093","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144589719","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}
Australia's National Disability Insurance Scheme (NDIS) funds individualised supports to increase choice and control. The relationship between NDIS individualised funding, outcomes for wellbeing and exercising choice and control for people with intellectual disability has been unclear.
Method
Adult NDIS participants with intellectual disability (N = 62) completed a longitudinal survey with validated instruments exploring personal wellbeing and choice.
Findings
Personal wellbeing scores were generally positive, with the mean comparable to that found for a similar population over a decade ago. High choice and control were evident for most individuals over everyday matters, but not key life decisions. Living environment and physical and/or mental and emotional health status were associated with the level of satisfaction with personal wellbeing and everyday choice and control.
Conclusions
There is need to better support people with intellectual disability to exercise choice and control over key life decisions and to address disparities in choice and wellbeing associated with living environment, physical and mental and emotional health and future security.
{"title":"The Relationship Between Personal Wellbeing, Choice and NDIS Individualised Planning and Support for People With Intellectual Disabilities","authors":"Vivienne Riches, Trevor Parmenter, Gisselle Gallego, Ziad Al-Rubaie, Mary-Ann O'Donovan, Patricia O'Brien","doi":"10.1111/jar.70085","DOIUrl":"https://doi.org/10.1111/jar.70085","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Australia's National Disability Insurance Scheme (NDIS) funds individualised supports to increase choice and control. The relationship between NDIS individualised funding, outcomes for wellbeing and exercising choice and control for people with intellectual disability has been unclear.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Adult NDIS participants with intellectual disability (<i>N</i> = 62) completed a longitudinal survey with validated instruments exploring personal wellbeing and choice.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Personal wellbeing scores were generally positive, with the mean comparable to that found for a similar population over a decade ago. High choice and control were evident for most individuals over everyday matters, but not key life decisions. Living environment and physical and/or mental and emotional health status were associated with the level of satisfaction with personal wellbeing and everyday choice and control.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>There is need to better support people with intellectual disability to exercise choice and control over key life decisions and to address disparities in choice and wellbeing associated with living environment, physical and mental and emotional health and future security.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70085","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144598655","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}
Sarah A. Hall, Roger J. Stancliffe, Lynda Lahti Anderson
Background
Researchers need to hear directly from individuals with intellectual disabilities to better understand their experiences and perspectives. However, much inclusive research uses interviews and focuses mainly on people with greater communication skills. One priority is to expand the research techniques used to be more inclusive of people with higher support needs.
Method
Qualitative analysis of interview transcripts identified themes related to a support person's roles in assisting individuals' interview participation. Quantitative analysis identified factors related to the co-creation of responses, including turn-taking.
Results
Supporters helped participants to convey knowledge about the individuals' experiences. They provided encouragement and informational support. Supporters helped explain interview questions and co-create answers. These supporters played a supportive role and did not overpower or silence the responses of research participants.
Conclusions
Including supporters chosen by research participants with intellectual disabilities as a support person during qualitative research interviews may be an effective tool in inclusive research.
{"title":"Using Supporters to Increase Participation in Qualitative Research Interviews by People With Intellectual Disabilities","authors":"Sarah A. Hall, Roger J. Stancliffe, Lynda Lahti Anderson","doi":"10.1111/jar.70094","DOIUrl":"https://doi.org/10.1111/jar.70094","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Researchers need to hear directly from individuals with intellectual disabilities to better understand their experiences and perspectives. However, much inclusive research uses interviews and focuses mainly on people with greater communication skills. One priority is to expand the research techniques used to be more inclusive of people with higher support needs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Qualitative analysis of interview transcripts identified themes related to a support person's roles in assisting individuals' interview participation. Quantitative analysis identified factors related to the co-creation of responses, including turn-taking.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Supporters helped participants to convey knowledge about the individuals' experiences. They provided encouragement and informational support. Supporters helped explain interview questions and co-create answers. These supporters played a supportive role and did not overpower or silence the responses of research participants.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Including supporters chosen by research participants with intellectual disabilities as a support person during qualitative research interviews may be an effective tool in inclusive research.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70094","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144598661","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}
Jodie Rawles, Sue Caton, Dawn Cavanagh, Chris Hatton, Richard P. Hastings, the Coronavirus and People with Learning Disabilities Study Team
Background
People with intellectual disabilities were disproportionately negatively affected during the COVID-19 pandemic, but there has been limited research about the perceived longer-term impact.
Methods
Data were collected through a two-stage narrative interview process with eight adults with intellectual disabilities. Participants told their storey about their lives at the time of the first lockdown in 2020, what their lives were like 3 years later, and what they hoped for the future. A second interview filled any gaps in the narrative. Data were analysed thematically.
Results
Four themes were identified: navigating disruptions to meaningful activities; unique challenges associated with residing in group-living environments; anger at the Government; barriers to moving forward.
Conclusions
The themes identified reflect powerful emotional memories of challenging experiences during the COVID-19 pandemic. Life continues to be difficult for many due to ongoing difficulties in getting the right support.
{"title":"Three Years on From “Stay at Home”: Perspectives of People With Intellectual Disabilities About the Ongoing Impact of the COVID-19 Pandemic","authors":"Jodie Rawles, Sue Caton, Dawn Cavanagh, Chris Hatton, Richard P. Hastings, the Coronavirus and People with Learning Disabilities Study Team","doi":"10.1111/jar.70076","DOIUrl":"https://doi.org/10.1111/jar.70076","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities were disproportionately negatively affected during the COVID-19 pandemic, but there has been limited research about the perceived longer-term impact.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Data were collected through a two-stage narrative interview process with eight adults with intellectual disabilities. Participants told their storey about their lives at the time of the first lockdown in 2020, what their lives were like 3 years later, and what they hoped for the future. A second interview filled any gaps in the narrative. Data were analysed thematically.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Four themes were identified: navigating disruptions to meaningful activities; unique challenges associated with residing in group-living environments; anger at the Government; barriers to moving forward.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The themes identified reflect powerful emotional memories of challenging experiences during the COVID-19 pandemic. Life continues to be difficult for many due to ongoing difficulties in getting the right support.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70076","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144573860","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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