Max Whittaker, Andrew Jahoda, Dani Lewis, Dave Dagnan
Background
There is an increasing interest in therapeutic alliance within talking therapy for people with intellectual disability. The applicability of frameworks such as Bordin's (1979) model of therapy alliance has not been considered.
Method
A review of qualitative literature on people with intellectual disability's experience of talking therapy identified 23 papers. A ‘best fit’ framework synthesis was used to explore the applicability of Bordin's model to the experiences of people with intellectual disability in therapy.
Results
The analysis supported Bordin's core themes of bond, task and goals. An additional theme was identified concerning the extension of the therapist's role to include active advocacy and support in the lives of people with intellectual disability outside of therapy.
Conclusion
This study identified the experience of people with intellectual disability in therapy as consistent with Bordin's model and suggests that further research specific to the model would be productive.
{"title":"Exploring How People With Intellectual Disabilities Experience the Therapeutic Alliance: A ‘Best Fit’ Framework Analysis Using Bordin's Model","authors":"Max Whittaker, Andrew Jahoda, Dani Lewis, Dave Dagnan","doi":"10.1111/jar.70187","DOIUrl":"10.1111/jar.70187","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>There is an increasing interest in therapeutic alliance within talking therapy for people with intellectual disability. The applicability of frameworks such as Bordin's (1979) model of therapy alliance has not been considered.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A review of qualitative literature on people with intellectual disability's experience of talking therapy identified 23 papers. A ‘best fit’ framework synthesis was used to explore the applicability of Bordin's model to the experiences of people with intellectual disability in therapy.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The analysis supported Bordin's core themes of bond, task and goals. An additional theme was identified concerning the extension of the therapist's role to include active advocacy and support in the lives of people with intellectual disability outside of therapy.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>This study identified the experience of people with intellectual disability in therapy as consistent with Bordin's model and suggests that further research specific to the model would be productive.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"39 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2026-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12830318/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146042243","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}
Elif Abanoz, Ayla Uzun Cicek, Ilknur Ucuz, Semiha Comertoglu Arslan, Seda Aybuke Sari, Ozlem Sireli
Background
Data on psychiatric comorbidities in children with intellectual disability (ID) across subgroups remain limited. Thus, we aimed to investigate comorbidity prevalence by age, sex, ID severity, and socioeconomic status.
Methods
This multicentre, cross-sectional study included 1742 children with ID consecutively recruited from child psychiatry outpatient clinics. Participants were assessed using comprehensive psychiatric interviews, the Strengths and Difficulties Questionnaire, and Clinical Global Impression.
Results
Comorbid psychiatric disorders were present in 86.2% of the sample; 24.7% had one, and 61.5% had two or more. The most common diagnoses were ADHD (44.3%), anxiety disorders (40.0%), oppositional defiant disorder (36.7%), and conduct disorder (29.2%). Comorbidity rates were significantly higher in males, adolescents, those with severe ID, and those from higher-income families. Internalising disorders were more common in females; externalising disorders in males and adolescents.
Conclusions
Our findings suggest the integration of systematic, developmentally sensitive psychiatric screening into standard clinical care for children with ID.
{"title":"Who Is Most at Risk? Exploring the Prevalence of Psychiatric Comorbidities in Children With Intellectual Disability by Age, Sex, Severity, and Socioeconomic Background","authors":"Elif Abanoz, Ayla Uzun Cicek, Ilknur Ucuz, Semiha Comertoglu Arslan, Seda Aybuke Sari, Ozlem Sireli","doi":"10.1111/jar.70185","DOIUrl":"10.1111/jar.70185","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Data on psychiatric comorbidities in children with intellectual disability (ID) across subgroups remain limited. Thus, we aimed to investigate comorbidity prevalence by age, sex, ID severity, and socioeconomic status.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This multicentre, cross-sectional study included 1742 children with ID consecutively recruited from child psychiatry outpatient clinics. Participants were assessed using comprehensive psychiatric interviews, the Strengths and Difficulties Questionnaire, and Clinical Global Impression.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Comorbid psychiatric disorders were present in 86.2% of the sample; 24.7% had one, and 61.5% had two or more. The most common diagnoses were ADHD (44.3%), anxiety disorders (40.0%), oppositional defiant disorder (36.7%), and conduct disorder (29.2%). Comorbidity rates were significantly higher in males, adolescents, those with severe ID, and those from higher-income families. Internalising disorders were more common in females; externalising disorders in males and adolescents.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our findings suggest the integration of systematic, developmentally sensitive psychiatric screening into standard clinical care for children with ID.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"39 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2026-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146042246","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}
Melody V. Escobar, Shannon R. Eshman, Carlee Hollinger, Erik W. Carter, Sarah S. Mire, Sara Tomek
Background
Although respite care is a critical support for families, most research has focused on its impact on caregivers. This mixed-methods study explored the impact of respite care on children with intellectual and developmental disabilities.
Method
We surveyed 178 parents and interviewed 31 parents of children and youth with disabilities (ages 6–23) about the ways they observed their children benefiting from overnight respite care. Our research team independently coded the interviews, compared interpretations and refined emerging themes until consensus was achieved.
Results
Multiple benefits were identified, including broadening children's experiences, personal growth, increased autonomy, feeling known and valued, new friendships, experiencing love and spiritual well-being.
Conclusion
These dimensions provide new insights into the mutual impact of respite care and underscore the need to increase children's access to consistent opportunities for extended breaks, especially overnight rest. We explore directions for future research and practice to broaden family support services.
{"title":"Parents’ Perspectives on How Respite Care Impacts Children With Intellectual and Developmental Disabilities","authors":"Melody V. Escobar, Shannon R. Eshman, Carlee Hollinger, Erik W. Carter, Sarah S. Mire, Sara Tomek","doi":"10.1111/jar.70177","DOIUrl":"10.1111/jar.70177","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Although respite care is a critical support for families, most research has focused on its impact on caregivers. This mixed-methods study explored the impact of respite care on children with intellectual and developmental disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>We surveyed 178 parents and interviewed 31 parents of children and youth with disabilities (ages 6–23) about the ways they observed their children benefiting from overnight respite care. Our research team independently coded the interviews, compared interpretations and refined emerging themes until consensus was achieved.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Multiple benefits were identified, including broadening children's experiences, personal growth, increased autonomy, feeling known and valued, new friendships, experiencing love and spiritual well-being.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>These dimensions provide new insights into the mutual impact of respite care and underscore the need to increase children's access to consistent opportunities for extended breaks, especially overnight rest. We explore directions for future research and practice to broaden family support services.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"39 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2026-01-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146020708","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}
Amy E. Bodde, Jessica C. Danon, Lyndsie Koon, Kathryn M. Sachs, Madison Banwart, Bethany Forseth, Joseph Sherman, Brian C. Helsel, Lauren T. Ptomey
Background
Young adults with intellectual disabilities experience significant cardiometabolic health disparities which may inhibit progress towards independence, underscoring the need for targeted interventions. This study examined how individuals with intellectual disabilities and caregivers perceived the relevance and acceptability of a cooking and fitness skills intervention.
Methods
Fourteen semi-structured post-intervention interviews with individuals with intellectual disabilities and their caregivers queried preferences, challenges, benefits and impacts of a cooking skills and functional fitness intervention called CHEF-ID. Results were analysed thematically.
Results
Four themes were identified: (1) autonomy and competence in everyday life; (2) enriching experiences and relationships; (3) suggestions for programme enhancement; and (4) meeting a community need.
Conclusions
Interviewees valued enhanced autonomy and competence for physical activity and cooking skills and made meaningful social connections, although participants differed in their preference for individual versus group work. Transportation was a frequently cited challenge. Future interventions should consider these factors to optimise programme design.
{"title":"A Qualitative Exploration of Perspectives From Young Adults With Intellectual Disabilities and Their Caregivers Participating in a Lifestyle Intervention to Enhance Cooking Skills and Physical Fitness","authors":"Amy E. Bodde, Jessica C. Danon, Lyndsie Koon, Kathryn M. Sachs, Madison Banwart, Bethany Forseth, Joseph Sherman, Brian C. Helsel, Lauren T. Ptomey","doi":"10.1111/jar.70181","DOIUrl":"10.1111/jar.70181","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Young adults with intellectual disabilities experience significant cardiometabolic health disparities which may inhibit progress towards independence, underscoring the need for targeted interventions. This study examined how individuals with intellectual disabilities and caregivers perceived the relevance and acceptability of a cooking and fitness skills intervention.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Fourteen semi-structured post-intervention interviews with individuals with intellectual disabilities and their caregivers queried preferences, challenges, benefits and impacts of a cooking skills and functional fitness intervention called CHEF-ID. Results were analysed thematically.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Four themes were identified: (1) autonomy and competence in everyday life; (2) enriching experiences and relationships; (3) suggestions for programme enhancement; and (4) meeting a community need.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Interviewees valued enhanced autonomy and competence for physical activity and cooking skills and made meaningful social connections, although participants differed in their preference for individual versus group work. Transportation was a frequently cited challenge. Future interventions should consider these factors to optimise programme design.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"39 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2026-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146013454","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}
Mathew Albert Wei Ting Lim, Brian To, Michelle Chow, Yuti Gandhi, Jennifer Nguyen, Xinyuan Yang, Ruth Heredia, Mihiri Silva, Claudia Patricia Lopez Silva
Background
Dental professionals experience challenges that impact on their willingness to treat patients with disabilities and additional health care needs, resulting in poorer access to dental care and unmet treatment needs.
Method
Fifty-eight public-sector oral health professionals responded to an online survey. They responded to questions about the barriers they encountered when treating patients with disabilities and additional healthcare needs and their preferences for support.
Results
Clinicians reported environment-related factors to have the greatest impact on treatment of patients with intellectual and physical disabilities (94.8%). Clinician-related barriers were the least reported (67.2%). Participants felt that having greater flexibility in appointments and support from more experienced clinicians would be most likely to encourage clinicians to treat these patients. Most (83.0%) were interested in developing their skills and knowledge.
Conclusions
There is significant opportunity for additional supports for clinicians to improve access to dental care for people with special healthcare needs.
{"title":"Opportunities to Support Oral Health Professionals Overcome the Barriers They Experience When Treating Patients With Disabilities and Additional Health Care Needs","authors":"Mathew Albert Wei Ting Lim, Brian To, Michelle Chow, Yuti Gandhi, Jennifer Nguyen, Xinyuan Yang, Ruth Heredia, Mihiri Silva, Claudia Patricia Lopez Silva","doi":"10.1111/jar.70174","DOIUrl":"10.1111/jar.70174","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Dental professionals experience challenges that impact on their willingness to treat patients with disabilities and additional health care needs, resulting in poorer access to dental care and unmet treatment needs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Fifty-eight public-sector oral health professionals responded to an online survey. They responded to questions about the barriers they encountered when treating patients with disabilities and additional healthcare needs and their preferences for support.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Clinicians reported environment-related factors to have the greatest impact on treatment of patients with intellectual and physical disabilities (94.8%). Clinician-related barriers were the least reported (67.2%). Participants felt that having greater flexibility in appointments and support from more experienced clinicians would be most likely to encourage clinicians to treat these patients. Most (83.0%) were interested in developing their skills and knowledge.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>There is significant opportunity for additional supports for clinicians to improve access to dental care for people with special healthcare needs.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"39 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2026-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146013460","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}
Qualitative research involving interviews typically includes transcribing verbal data. However, insights about meaning can also be ascertained from nonverbal and paraverbal communications. Transcribing nonverbal data allows researchers to include and analyze this additional data whilst ensuring participants' confidentiality.
Methods
Six participants with intellectual disabilities were interviewed using Talking Mats as a communication tool to support data collection. The verbal, nonverbal, and paraverbal data were transcribed using a notation system and analysed using triangulation.
Findings
Most of the nonverbal communications corroborated the spoken word; however, nonverbal and paraverbal communication also captured additional information, which added depth, shared understanding, and expanded the insights into the research process or refuted the spoken word, which in turn provided new insights.
Conclusions
This paper presents a method to analyse verbal, nonverbal and paraverbal data to provide depth and new or more accurate meaning and highlights benefits of including nonverbal communication in research.
{"title":"Enhancing Description and Interpretation of Qualitative Interviews With People With Intellectual Disabilities Through Nonverbal and Paraverbal Data Collection and Analysis","authors":"Lynette Harper, Rob Burton, Ian Walshe, Ann Ooms","doi":"10.1111/jar.70183","DOIUrl":"10.1111/jar.70183","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Qualitative research involving interviews typically includes transcribing verbal data. However, insights about meaning can also be ascertained from nonverbal and paraverbal communications. Transcribing nonverbal data allows researchers to include and analyze this additional data whilst ensuring participants' confidentiality.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Six participants with intellectual disabilities were interviewed using Talking Mats as a communication tool to support data collection. The verbal, nonverbal, and paraverbal data were transcribed using a notation system and analysed using triangulation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Most of the nonverbal communications corroborated the spoken word; however, nonverbal and paraverbal communication also captured additional information, which added depth, shared understanding, and expanded the insights into the research process or refuted the spoken word, which in turn provided new insights.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This paper presents a method to analyse verbal, nonverbal and paraverbal data to provide depth and new or more accurate meaning and highlights benefits of including nonverbal communication in research.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"39 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2026-01-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70183","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145999806","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}
Carmit-Noa Shpigelman, Michal Isaacson, Adi Cohen-Nudelman
Background
The increased longevity of persons with intellectual disability (ID) means growing numbers are moving to out-of-home residence, affecting their contact with family members. Digital technologies may provide a venue for maintaining contact. This study sheds light on their adoption process.
Method
Sixteen older adults with ID who live in supported accommodation used tablets for WhatsApp video calls with family members for a month. They were interviewed before and following this intervention.
Findings
Two main themes were found regarding the implications of technology use: (1) video calls contributed to the residents' sense of closeness to their families and their well-being and (2) free access to technology and ongoing accessibility were essential to successful adoption.
Conclusions
Using WhatsApp video call and its visual aspect made the residents become more active in contacting their families. However, technology adoption depends also on reciprocity and an accommodated supportive environment within the context of resident-family-staff.
{"title":"Digital Pathways to Family Bonds: Exploring WhatsApp Video Calls Adoption by Older Adults With Intellectual Disability in Out-of-Home Residence","authors":"Carmit-Noa Shpigelman, Michal Isaacson, Adi Cohen-Nudelman","doi":"10.1111/jar.70173","DOIUrl":"10.1111/jar.70173","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The increased longevity of persons with intellectual disability (ID) means growing numbers are moving to out-of-home residence, affecting their contact with family members. Digital technologies may provide a venue for maintaining contact. This study sheds light on their adoption process.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Sixteen older adults with ID who live in supported accommodation used tablets for WhatsApp video calls with family members for a month. They were interviewed before and following this intervention.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Two main themes were found regarding the implications of technology use: (1) video calls contributed to the residents' sense of closeness to their families and their well-being and (2) free access to technology and ongoing accessibility were essential to successful adoption.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Using WhatsApp video call and its visual aspect made the residents become more active in contacting their families. However, technology adoption depends also on reciprocity and an accommodated supportive environment within the context of resident-family-staff.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"39 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2026-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12808865/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145992232","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}
Benedetta Ceci, Madison M. Walsh, Sara Colaianni, Miranda E. Pinks, Sara Onnivello, Kaylyn Van Deusen, Francesca Pulina, Chiara Marcolin, Bethany A. Gray, Elisa Rossi, Erika Lupati, Margherita Pietrobon, Alessandra Tomè, Deborah J. Fidler, Silvia Lanfranchi
Background
This cross-national study aimed to investigate and identify the motivations that drive parents of children with Down syndrome (DS) towards or away from participating in research.
Methods
Participants were 33 parents of children with DS who took part in nine focus groups in the United States and in Italy. Answers to questions regarding motivation for research participation were transcribed and then analyzed using ATLAS.ti.
Results
Six themes emerged regarding parent motivation: (a) Increasing parent knowledge; (b) Interest in a specific research topic; (c) Opportunities to receive support; (d) Logistical accessibility; (e) To support the DS community; and (f) To create a more inclusive society. ‘Interest in a specific research topic’ and ‘Logistical accessibility’ emerged as the main motivating factors cross-culturally. Only subtle differences emerged between the two countries.
Conclusion
Results of this work can inform the alignment of future DS research with community and stakeholder priorities and values.
{"title":"What Motivates Parents of Young Children With Down Syndrome to Participate in Research: A Focus Group Analysis","authors":"Benedetta Ceci, Madison M. Walsh, Sara Colaianni, Miranda E. Pinks, Sara Onnivello, Kaylyn Van Deusen, Francesca Pulina, Chiara Marcolin, Bethany A. Gray, Elisa Rossi, Erika Lupati, Margherita Pietrobon, Alessandra Tomè, Deborah J. Fidler, Silvia Lanfranchi","doi":"10.1111/jar.70178","DOIUrl":"10.1111/jar.70178","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This cross-national study aimed to investigate and identify the motivations that drive parents of children with Down syndrome (DS) towards or away from participating in research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Participants were 33 parents of children with DS who took part in nine focus groups in the United States and in Italy. Answers to questions regarding motivation for research participation were transcribed and then analyzed using ATLAS.ti.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Six themes emerged regarding parent motivation: (a) Increasing parent knowledge; (b) Interest in a specific research topic; (c) Opportunities to receive support; (d) Logistical accessibility; (e) To support the DS community; and (f) To create a more inclusive society. ‘Interest in a specific research topic’ and ‘Logistical accessibility’ emerged as the main motivating factors cross-culturally. Only subtle differences emerged between the two countries.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Results of this work can inform the alignment of future DS research with community and stakeholder priorities and values.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"39 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2026-01-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12795633/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145960774","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}
Identifying the needs of children with cerebral palsy and their caregivers is still a current clinical practice gap. This study aimed to assess parents' perceptions of their children with cerebral palsy using the Arabic version of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) scale and identify factors influencing these perceptions.
Methods
Seventy children with cerebral palsy and their caregivers were recruited in this hospital-based cross-sectional study. The Arabic version of the CPCHILD scale was used to assess parents' perceptions of their cerebral palsy children's priorities. Participants' clinical and demographic traits were assessed to identify potential risk factors.
Results
Poor CPCHILD scores were predicted by older mothers, children with co-occurring intellectual disability, children with severe disabilities and children who did not receive frequent physiotherapy.
Conclusion
Identifying the risk factors can help optimise medical care and support services for children with cerebral palsy and their families.
{"title":"Caregivers' Perspectives on the Health Status of Children With Cerebral Palsy","authors":"Sahar Mohamed Ahmed Hassanein, Ghada Essam Eldin Amin, Nermin Hassan El-Gharbawy, Duaa Mohamed Mostafa Mohamed, Asmaa Wafeeq Abdelaziz","doi":"10.1111/jar.70180","DOIUrl":"10.1111/jar.70180","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Identifying the needs of children with cerebral palsy and their caregivers is still a current clinical practice gap. This study aimed to assess parents' perceptions of their children with cerebral palsy using the Arabic version of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) scale and identify factors influencing these perceptions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Seventy children with cerebral palsy and their caregivers were recruited in this hospital-based cross-sectional study. The Arabic version of the CPCHILD scale was used to assess parents' perceptions of their cerebral palsy children's priorities. Participants' clinical and demographic traits were assessed to identify potential risk factors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Poor CPCHILD scores were predicted by older mothers, children with co-occurring intellectual disability, children with severe disabilities and children who did not receive frequent physiotherapy.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Identifying the risk factors can help optimise medical care and support services for children with cerebral palsy and their families.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"39 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2026-01-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145960769","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}
Prader-Willi syndrome is a complex neurogenetic condition. Recognised to affect the entire family, little is known of the sibling experience.
Objectives
Review the experiences and support needs of siblings of people with Prader-Willi syndrome.
Methods
Eight databases, registers and grey literature were searched covering October 2000–May 2024. Search terms were based on siblings and their experiences of a sibling who has Prader-Willi syndrome. Quality appraisal deployed the Mixed Methods Appraisal Tool. Qualitative findings were assessed using thematic analysis. Quantitative results were summarised and integrated using narrative synthesis.
Results
Out of 7588 results, seven studies were selected. Quantitative reports primarily highlighted negative psychological effects, whilst qualitative reports concentrated on family relations. Narrative synthesis identified psychological impact, influence on family relationships, and the effect of familial characteristics.
Conclusions and Implications
Sibling experiences are shaped by family context. The need for family-centred approach in research and practise is advocated.
{"title":"Experiences and Support Needs of Siblings of Individuals With Prader-Willi Syndrome: An Integrative Systematic Review","authors":"Meghana Wadnerkar Kamble, Jen Dawe, Karen Bunning","doi":"10.1111/jar.70171","DOIUrl":"10.1111/jar.70171","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Prader-Willi syndrome is a complex neurogenetic condition. Recognised to affect the entire family, little is known of the sibling experience.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>Review the experiences and support needs of siblings of people with Prader-Willi syndrome.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Eight databases, registers and grey literature were searched covering October 2000–May 2024. Search terms were based on siblings and their experiences of a sibling who has Prader-Willi syndrome. Quality appraisal deployed the Mixed Methods Appraisal Tool. Qualitative findings were assessed using thematic analysis. Quantitative results were summarised and integrated using narrative synthesis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Out of 7588 results, seven studies were selected. Quantitative reports primarily highlighted negative psychological effects, whilst qualitative reports concentrated on family relations. Narrative synthesis identified psychological impact, influence on family relationships, and the effect of familial characteristics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions and Implications</h3>\u0000 \u0000 <p>Sibling experiences are shaped by family context. The need for family-centred approach in research and practise is advocated.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"39 1","pages":""},"PeriodicalIF":1.9,"publicationDate":"2026-01-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12791193/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145953623","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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