Journal of Applied Research in Intellectual Disabilities最新文献

{"title":"Barriers and Facilitators to Staff's Implementation of Behaviour Support Plans in Community Settings","authors":"Dearbhaile Mahon,&nbsp;Cayleigh Dunworth,&nbsp;Jennifer McSharry,&nbsp;Jennifer Holloway,&nbsp;Helena Lydon","doi":"10.1111/jar.70049","DOIUrl":"https://doi.org/10.1111/jar.70049","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Behaviour supports plans (BSP), if accurately implemented, have been found to increase skills and decrease behaviours that challenge for individuals with intellectual disabilities. However, skills acquired by staff during trainings on BSPs often fail to transfer into effective implementation. The current study aimed to examine barriers and facilitators to BSP implementation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Focus groups were conducted with four staff teams (<i>n</i> = 21) and semi-structured interviews were carried out with each team's respective team leader (<i>n</i> = 4). Thematic analysis, involving inductive and deductive approaches, was used to analyse the data.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Environmental context and resources (e.g., compatibility of environment) and social influences (e.g., level of team communication) were the predominant domains impacting on implementation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Findings emphasise the importance of service providers aligning with the core values of positive behaviour support, which acts as a facilitator for effective BSP implementation. These include integral social processes such as collaboration across key stakeholders and person-centred planning.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70049","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143861630","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}

{"title":"Life Satisfaction, Global Health and Mood in Prader–Willi Syndrome: Use of PROMIS and Glasgow Depression Scales","authors":"Lauren Schwartz,&nbsp;Caroline J. Vrana-Diaz,&nbsp;Jessica E. Bohonowych,&nbsp;Lisa Matesevac,&nbsp;Theresa V. Strong","doi":"10.1111/jar.70053","DOIUrl":"https://doi.org/10.1111/jar.70053","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Prader–Willi syndrome (PWS) is a rare neurodevelopmental disorder with symptoms that impact health and quality of life (QOL). There is limited data on global health, QOL and the relationship with mood in individuals with PWS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Parents completed three validated assessments, the Glasgow Depression Scale-Carer Supplement (GDS-CS), PROMIS Parent-Proxy Global Health 7 and PROMIS Parent-Proxy Life Satisfaction 8b, for 527 individuals with PWS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Mean GDS-CS score was 8.29 (SD 4.55), and 18% had a score of 13+, reflective of possible depression. Mean PROMIS Global Health and Life Satisfaction scores were 41.46 (SD 8.48) and 43.39 (SD 8.48), respectively, and are lower compared to the general population. Both PROMIS scales worsened with age, and scores on the PROMIS and GDS-CS were associated with parent reports of depression for the person with PWS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>These validated instruments may be useful for assessing mood and QOL in PWS.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-04-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70053","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143826967","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}

{"title":"Middle-Aged Women With Rett Syndrome: Longitudinal Profile From the British Isles Rett Syndrome Survey and Suggestions for Care","authors":"Anna Hryniewiecka-Jaworska,&nbsp;Emily Sloper,&nbsp;Hayley Archer,&nbsp;Angus John Clarke","doi":"10.1111/jar.70051","DOIUrl":"https://doi.org/10.1111/jar.70051","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background and Methods</h3>\u0000 \u0000 <p>We report historical information from longitudinal data held in the British Isles Rett Syndrome Survey (BIRSS) concerning women of at least 40 years. This information, including comments on the quality of care, has been provided by families, carers, and clinicians.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Information was available on 30 women with a clinical diagnosis of Rett syndrome (RTT), of whom 24 were &lt; 50 years. Twenty-nine women were diagnosed with classic RTT and one with atypical RTT. Of 18 women tested for <i>MECP2</i> mutations, pathogenic variants were identified in 14. There was little increase in severity over time.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The study found that: (1) milder phenotypes were common; (2) depression may be under-recognised; (3) menopause does not seem to occur early; (4) nutrition standards from the general population will often be inapplicable; (5) multiple opportunities exist to prevent functional decline through detailed attention to the quality of the medical and social care.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-04-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70051","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143793595","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}

{"title":"PODER Familiar: A Culturally Tailored Health Intervention for Latino Families of Children With Intellectual and Developmental Disabilities","authors":"Amy Pei-Lung Yu,&nbsp;Yolanda Suarez-Balcazar,&nbsp;Vanessa L. Errisuriz,&nbsp;Deborah Parra-Medina,&nbsp;Mansha Mirza,&nbsp;Minyu Zhang,&nbsp;Pei-Chiang Lee,&nbsp;Weiwen Zeng,&nbsp;Jasmine P. Brown-Hollie,&nbsp;Eduardo Yespica Mendoza,&nbsp;Stephany Brown,&nbsp;Sandra B. Vanegas,&nbsp;Nazanin M. Heydarian,&nbsp;Sandy Magaña","doi":"10.1111/jar.70048","DOIUrl":"https://doi.org/10.1111/jar.70048","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This two-site pilot study examined the feasibility, acceptability and preliminary outcomes of <i>PODER Familiar</i>, a culturally tailored intervention to promote the health and well-being of Latina family caregivers and their children with intellectual and developmental disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Using the Promotora de Salud model and mixed-methods design, we co-developed <i>PODER Familiar</i> with Latina caregivers of children with intellectual and developmental disabilities and community stakeholders. Thirty Latina caregivers and their children with disabilities were recruited to participate in the intervention, which included 10 individual sessions and 3 group sessions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Twenty-six Latina caregivers completed all 10 individual sessions, with high intervention fidelity and satisfaction. Preliminary data showed improvements in psychosocial, behavioural, and health outcomes of Latina family caregivers and their children. Participants also highlighted cultural relevance, the value of promotoras, and positive impacts on family health behaviours.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Preliminary findings suggest that <i>PODER Familiar</i> is a promising approach. Recommendations are included.</p>\u0000 \u0000 <p><b>Trial Registration:</b> ClinicalTrials.gov identifier: NCT05713617.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143778380","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}

{"title":"The Transition From Family Home to Alternative Living Arrangements: Experiences of Adults With Intellectual Disabilities and Their Family Members","authors":"Ruth Walker,&nbsp;Irene Belperio,&nbsp;Christine Bigby,&nbsp;Ilan Wiesel,&nbsp;Fiona Rillotta,&nbsp;Claire Hutchinson","doi":"10.1111/jar.70047","DOIUrl":"https://doi.org/10.1111/jar.70047","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>It is well documented that many adults with intellectual disabilities live with ageing parents, often without concrete plans for transitioning to alternative living arrangements. Little is known about transition experiences once they occur. This study explores the experiences of adults with intellectual disabilities and their family members of this transition through a relational lens.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Semi-structured interviews were conducted with 25 people: 8 adults with intellectual disabilities, 13 parents, and 4 siblings.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three themes were constructed from the data: ‘Gaining independence and letting go’, ‘negotiating unfamiliar relationships’ and ‘social inclusion and making new connections.’</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Adults with intellectual disabilities discussed numerous benefits associated with moving out of the family home, including increased autonomy and opportunities for new relationships. Family members also described benefits of the transition, but some grappled with needing to ‘let go’ whilst at the same time retaining some degree of control over their family members’ lives.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70047","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143770055","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}

{"title":"Personal and Systemic Violence as Experienced by Parents With Intellectual Disability in Poland","authors":"Agnieszka Wołowicz,&nbsp;Katarzyna Ćwirynkało","doi":"10.1111/jar.70050","DOIUrl":"https://doi.org/10.1111/jar.70050","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>For many people with intellectual disabilities, the parenting role is inaccessible and/or constrained. This study provides insight into the lived experiences of parents with intellectual disabilities regarding violence and limiting their rights to parenthood in Poland.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Twenty-seven parents with intellectual disabilities who experienced violence in the sphere of parenthood took part in individual, semi-structured interviews.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Having applied a thematic analysis, we identified four main themes: The impact of institutional violence on access to parenthood, Family members limiting access to parenting, the impact of systemic and structural violence on accessing parenthood, and responses and actions to violence.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Parents with intellectual disabilities reported experiencing unjust, discriminatory, and violent treatment. There is a need to eliminate these barriers by ensuring that international regulations are respected in Poland. Additionally, developing educational programmes and social campaigns is essential to promote the successful parenthood of persons with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143762209","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}

{"title":"Interventions to Reduce Inappropriate Prescribing and Administration of Psychotropic Medications for People With Neurodevelopmental Disabilities: A Systematic Review and Meta-Analysis","authors":"Ben Younan,&nbsp;Mikaela Jorgensen,&nbsp;Glenys Holt,&nbsp;Monica Cuskelly,&nbsp;Manya Angley,&nbsp;Robyn Wallace,&nbsp;Juanita Breen,&nbsp;Donna Gillies","doi":"10.1111/jar.70046","DOIUrl":"https://doi.org/10.1111/jar.70046","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with neurodevelopmental disabilities are frequently prescribed or administered psychotropic medication, particularly to manage behaviours of concern. Reducing inappropriate psychotropic use has been the target of international research and policy for several decades.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Six electronic databases were searched for interventions to reduce inappropriate prescribing or administration of psychotropics in this population.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Sixteen pre–post studies were included in this review. Meta-analysis showed a significant reduction in the number of participants receiving psychotropics for medication review, multi-component interventions, workplace training, and organisational guidelines and policies (risk ratio [RR] = 0.52, 95% CI [0.43, 0.62], <i>p</i> &lt; 0.00). Subgroup analysis showed significant reductions with all interventions, with no apparent differences in reduction size between intervention types.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Interventions reduced psychotropic use in a meta-analysis of pre–post studies. However, potential bias and high heterogeneity suggest that randomised controlled trials (RCTs) are needed for more definitive conclusions.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143749374","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}

{"title":"Employer Perspectives on Hiring Individuals With Intellectual Disabilities: A Case Study From Serbia†","authors":"Biljana Milanović-Dobrota,&nbsp;Sara Jelić,&nbsp;Nataša Buha,&nbsp;Mirjana Japundža-Milisavljević","doi":"10.1111/jar.70045","DOIUrl":"https://doi.org/10.1111/jar.70045","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with intellectual disabilities have the lowest employment rates amongst all disability types, despite available job opportunities. Employer bias is a significant barrier to their workforce participation. This research examines employers' opinions towards hiring individuals with intellectual disabilities in Serbia.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>The sample included 358 employers. General attitudes and opinions on hiring individuals with intellectual disabilities were assessed using the Community Living Attitudes Scale and the Work for People with Disability Scale.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Employers' perspectives towards hiring individuals with intellectual disabilities are ambiguous. However, those with positive contact experiences view their employment more favourably, particularly regarding social acceptance in the workplace compared to work performance.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings indicate that employers in Serbia are not yet prepared to provide equal opportunities to individuals with intellectual disabilities. Increased engagement from relevant institutions is essential to develop new intervention programmes that enhance employment outcomes.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143726918","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}

{"title":"Development of an Online Training Course for Government Employees to Support Families With a Child With Profound Intellectual and Multiple Disabilities","authors":"Siméon T. A. Lahaije,&nbsp;Jorien Luijkx,&nbsp;Aly Waninge,&nbsp;Annette A. J. van der Putten","doi":"10.1111/jar.70039","DOIUrl":"https://doi.org/10.1111/jar.70039","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Families with a child with profound intellectual and multiple disabilities have to manage the pervasive support needs of their child, which is a complex task. By properly supporting them, we can ensure these families live a positive and meaningful life.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A product to support these families was developed using the method of Design Thinking, which included parents filling out three different questionnaires.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>It was found that parents preferred to be supported in strengthening their resilience and care capacity, specifically by improving the communication and (mutual) understanding between them and municipal government employees. An online training course for government employees was subsequently developed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study has led to the development of a product that can support families with a child with profound intellectual and multiple disabilities according to their needs and preferences. This study has also provided insights into how these parents prefer to be supported.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70039","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143690133","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}

{"title":"The Role of Specialised Medical ID Expertise in Care Consultations for People With Intellectual Disabilities: Experiences of Caregivers and Patients","authors":"Marian E. J. Breuer,&nbsp;Esther J. Bakker-van Gijssel,&nbsp;Tim Pelle,&nbsp;Jenneken Naaldenberg,&nbsp;Geraline L. Leusink","doi":"10.1111/jar.70042","DOIUrl":"https://doi.org/10.1111/jar.70042","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study aims to explore patients' and their caregivers' experiences with and expectations of a medical consultation with a specialised ID physician at an outpatient ID practice.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Fifteen semi-structured interviews were conducted with patients and their caregivers. Interview topics concerned (1) ID physician's knowledge and skills, (2) communication between participants and the ID physician and (3) coordination between the ID physician and other professionals.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Seven themes addressing the roles of the ID physician were identified. Five roles relate to actions and attributes during medical consultations: clinician, patient-centred doctor, holistic physician, human and sparring partner for the patient's network. Two roles relate to actions and attributes around medical consultations: coordinator and advocate.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Patients with intellectual disabilities and their caregivers value ID physicians' roles beyond clinical skills during consultations, including roles related to care coordination, having a professional network and advocating in a broader context around medical consultations.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70042","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143690039","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}