{"title":"The legal incapacitation (removal of decision-making rights) of people with intellectual disabilities as described by teachers. Between protection and the restriction of rights: \"In some cases it's necessary\".","authors":"Katarzyna Ćwirynkało, Monika Parchomiuk","doi":"10.3109/13668250.2026.2652728","DOIUrl":"https://doi.org/10.3109/13668250.2026.2652728","url":null,"abstract":"<p><strong>Background: </strong>Incapacitation is a legal measure that restricts self-determination for people with intellectual disabilities by giving decision-making authority to another person. This study explores how Polish special education teachers understand and engage with this instrument.</p><p><strong>Method: </strong>Semi-structured focus group interviews were conducted with three groups, comprising 21 teachers from special schools. The material was analysed using the principles of Interpretative Phenomenological Analysis.</p><p><strong>Results: </strong>Four themes were identified: meanings ascribed to incapacitation, school-parent dynamics, associated risks, and educational efforts promoting autonomy. Findings reveal ambivalent attitudes, limited awareness of legal alternatives, and a tendency to prioritise protection over autonomy.</p><p><strong>Conclusion: </strong>Pedagogical recommendations include regular training, sharing international best practices - especially regarding the United Nations Convention on the Rights of Persons with Disabilities - and creating spaces for dialogue among schools, families, and institutions. Supportive actions should be planned within school policies, particularly during transitional periods, to empower all participants in the educational process.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-13"},"PeriodicalIF":1.2,"publicationDate":"2026-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147788906","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Bharati Limbu, Shoumitro Deb, Cecilia Vindrola-Padros
{"title":"Process evaluation of SPECTROM training: Staff views from a feasibility cluster RCT.","authors":"Bharati Limbu, Shoumitro Deb, Cecilia Vindrola-Padros","doi":"10.3109/13668250.2026.2650600","DOIUrl":"https://doi.org/10.3109/13668250.2026.2650600","url":null,"abstract":"<p><strong>Background: </strong>The off-label prescription of psychotropic medications for behaviours that challenge in the absence of mental illness is a significant public health concern. SPECTROM, a staff training program, was co-produced in the United Kingdom to address these issues.</p><p><strong>Method: </strong>140 support staff received SPECTROM training. At the end of the training, focus groups were conducted with 14 staff to receive feedback. In the current article, we present data from the two focus groups.</p><p><strong>Results: </strong>The following themes were identified: improved knowledge, self-confidence, facilitated self-reflection, empowered staff, better attitude on medication use for behaviours that challenge, improved support provided, and challenges of SPECTROM delivery and implementation.</p><p><strong>Conclusion: </strong>The SPECTROM training and its resources were considered useful and relevant to staff's practice. Challenges were identified in delivering and implementing SPECTROM training, which needs to be addressed before a full-scale randomised controlled trial.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-11"},"PeriodicalIF":1.2,"publicationDate":"2026-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147788860","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Coercive and restrictive measures in municipal intellectual disability care: Legal compliance and practice in Norway.","authors":"Silje Marie Tessem, Audny Anke, Marius Storvik","doi":"10.3109/13668250.2026.2659500","DOIUrl":"https://doi.org/10.3109/13668250.2026.2659500","url":null,"abstract":"<p><strong>Background: </strong>This study examined how use of formalised coercive measures imposed on people with intellectual disabilities aligns with Norwegian law.</p><p><strong>Method: </strong>Cross-sectional study including 70 people subject to coercive measures, mean age 44 years, 54% men. Data were collected through structured interviews, hospital records, and municipal decisions on coercive measures.</p><p><strong>Results: </strong>Regional prevalence of people subject to coercive measures among people with intellectual disabilities was 8.5%. Municipalities sought exemptions from staff educational requirements in 97% of cases where people were subject to coercive measures, which were nearly always granted. On average, each person received care from 10 different staff members weekly. Twenty-three percent reported that care was not provided by a stable staff group. Notably, 29% of participants were subject to coercive measures without a legally valid authorisation. County-level governor inspections were rare.</p><p><strong>Conclusion: </strong>Discrepancies between legal care requirements and practice highlight the need for compliance, staff training, and stronger supervision.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-13"},"PeriodicalIF":1.2,"publicationDate":"2026-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147788895","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Do images aid learning of Easy Read health information for people with intellectual disabilities? A cognitive load perspective.","authors":"Jenna L Zhao, Janelle Weise, Hee Min Lee","doi":"10.3109/13668250.2026.2644310","DOIUrl":"https://doi.org/10.3109/13668250.2026.2644310","url":null,"abstract":"<p><strong>Background: </strong>This pilot study explored whether including images in Easy Read materials improves health information learning by people with intellectual disabilities, compared to text-only formats.</p><p><strong>Method: </strong>Nine adults with intellectual disabilities who could read simple English independently, participated in two sessions. In each session, participants answered and were scored on knowledge-check questions about a health topic before and after reading Easy Read information containing either images or no images. Participants were also interviewed on the learning strategies they used.</p><p><strong>Results: </strong>Including images in Easy Read did not result in significantly better performance on learning scores, though scores were substantially more variable when images were not included. Interview data indicated that participants considered images to be an important part of the reading experience.</p><p><strong>Conclusion: </strong>This study provides preliminary guidance on how Easy Read materials can be formatted to improve people with intellectual disabilities' comprehension of written health information.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-11"},"PeriodicalIF":1.2,"publicationDate":"2026-04-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147610600","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"(Future) roles in the care of siblings with intellectual disabilities: Experiences and needs of sisters in early adulthood.","authors":"Sanne A H Giesbers, Petri J C M Embregts","doi":"10.3109/13668250.2026.2629816","DOIUrl":"https://doi.org/10.3109/13668250.2026.2629816","url":null,"abstract":"<p><strong>Background: </strong>Siblings often maintain close relationships with their siblings who have intellectual disabilities, though research on the experiences of siblings in early adulthood who have siblings living in residential care is limited. This study explored their roles, experiences, and needs.</p><p><strong>Method: </strong>A focus group was held with eight sisters. Data were analysed using reflexive thematic analysis.</p><p><strong>Results: </strong>Four themes were identified: (i) I want to be (seen as) a sister, (ii) My role within the family in caring for my sibling, (iii) Having a sibling with intellectual disabilities shapes me and my life, and (iv) I am not able do this alone.</p><p><strong>Conclusion: </strong>The findings underscore the importance of recognising siblings' needs from an early age, considering family dynamics and involving the whole family in preparing for (future) caregiving roles, offering peer support programs, supporting siblings in balancing care with personal life, and raising awareness about the role of siblings-in-law.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-13"},"PeriodicalIF":1.2,"publicationDate":"2026-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147583066","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Characteristics of physical resources that facilitate family-led music-making with preschool children with profound intellectual and multiple disabilities.","authors":"Ajay Castelino","doi":"10.3109/13668250.2026.2623546","DOIUrl":"https://doi.org/10.3109/13668250.2026.2623546","url":null,"abstract":"<p><strong>Background: </strong>Families of preschool-aged children with profound intellectual and multiple disabilities often face challenges in shared music-making at home. Music therapist facilitated resources can support this process, yet little is known about what makes these tools effective within family contexts.</p><p><strong>Method: </strong>A qualitative multiple case study was conducted with four families of preschool-aged children with profound intellectual and multiple disabilities in Aotearoa New Zealand. Data from interviews, session notes, and a reflexive journal were analysed using Reflexive Thematic Analysis.</p><p><strong>Results: </strong>Six characteristics of physical resources facilitated family-led music-making: (i) easy to use (ii) customised to family priorities; (iii) reflected family identity; (iv) supported family system engagement; (v) supported caregiver confidence; and (vi) supported both musical and non-musical goals.</p><p><strong>Conclusion: </strong>The findings highlight how well-designed, adaptable, and culturally attuned music therapy resources can strengthen family participation, enhance caregiver confidence, and embed therapeutic music-making within everyday home life.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-12"},"PeriodicalIF":1.2,"publicationDate":"2026-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147488429","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"An exploration of the social and friendship experiences of adolescent girls with developmental disabilities: Perspectives of girls and their parents.","authors":"Kelly Offutt, Elisabeth Rice","doi":"10.3109/13668250.2026.2630396","DOIUrl":"https://doi.org/10.3109/13668250.2026.2630396","url":null,"abstract":"<p><strong>Background: </strong>This study explored the social and friendship experiences of adolescent girls with developmental disabilities through the perspectives of girls and their parents.</p><p><strong>Method: </strong>An inductive approach based on Merriam and Tisdell's qualitative design was used, together with components of grounded theory. Interviews were completed with 12 adolescent girls with developmental disabilities and their parents.</p><p><strong>Results: </strong>Contrary to the persistent narrative of girls with developmental disabilities as disinterested in friendships, girls in this study showed a strong interest in social opportunities and friendships. Unfortunately, the social environments that the girls have been placed in were rarely affirming of their social profiles, and parents were often expected to compensate for this lack of support. Participants reported a variety of social challenges.</p><p><strong>Conclusion: </strong>Stronger social support including environments that are affirming of the unique profile of girls with developmental disabilities is warranted.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-11"},"PeriodicalIF":1.2,"publicationDate":"2026-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147379669","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Learning from people with disabilities: Investigating effects on pre-service teachers' beliefs and practices in inclusive education.","authors":"Mia Hoffmann, Sonja Krämer, Friederike Zimmermann","doi":"10.3109/13668250.2025.2525659","DOIUrl":"10.3109/13668250.2025.2525659","url":null,"abstract":"<p><strong>Background: </strong>Teachers' beliefs are conducive to inclusion at school. Based on the intergroup contact theory, this study examined short - and long-term effects of an innovative contact intervention on pre-service teachers' beliefs and inclusive practices.</p><p><strong>Method: </strong>Using a pre-post-follow-up design, data were collected from <i>N</i> = 356 pre-service teachers in university teacher training, divided into an intervention group attending a seminar session with people with intellectual disabilities as lecturers and a comparison group following the standard curriculum.</p><p><strong>Results: </strong>Structural equation modelling indicated that the intervention influenced pre-service teachers' beliefs (attitudes, modern prejudices, self-efficacy) in the short term; there was no evidence of long-term effects, such as on inclusive practices.</p><p><strong>Conclusion: </strong>Incorporating interactive contact with people with disabilities into university teacher training could be an additional contribution to preparing teachers for inclusive education. An appropriate target for future research is to explore the mechanisms underlying changes in inclusion-related beliefs.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"39-50"},"PeriodicalIF":1.2,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144561886","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sarah E Bjornson, C Lindsay Fitzsimmons, Barry Isaacs, Adrienne Perry
{"title":"The family quality of life survey-2006: an examination of relationships between objective and subjective data.","authors":"Sarah E Bjornson, C Lindsay Fitzsimmons, Barry Isaacs, Adrienne Perry","doi":"10.3109/13668250.2025.2535873","DOIUrl":"10.3109/13668250.2025.2535873","url":null,"abstract":"<p><strong>Background: </strong>Family quality of life (FQOL) includes objective and subjective factors representing wellbeing for families of individuals with intellectual and developmental disabilities. The current project investigated the integration of objective and subjective data using the Family Quality of Life Survey - 2006 (FQOLS-2006).</p><p><strong>Method: </strong>169 parents/caregivers of individuals with intellectual and developmental disabilities participated. Relationships were examined between objective information from the A Sections of the Health, Finances, and Support from Services domains of the FQOLS-2006, and more subjective FQOL ratings in the B Sections.</p><p><strong>Results: </strong>We found strong relationships between the objective and subjective sections of the FQOLS-2006. Respondents reporting challenges in the A Sections generally reported lower Attainment/Satisfaction ratings in the B sections. However, some responses were discrepant.</p><p><strong>Conclusion: </strong>Objective and subjective measurements of FQOL were consistent but independent. Each type of measurement provided unique information and FQOL is best understood through the integration of these methods.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"74-82"},"PeriodicalIF":1.2,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144735228","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Valerie K Temple, Casey Fulford, Kathy Unsworth, Jocelynn L Cook, Svetlana Popova
{"title":"Fetal alcohol spectrum disorder (FASD): Comparing profiles of younger versus older adults.","authors":"Valerie K Temple, Casey Fulford, Kathy Unsworth, Jocelynn L Cook, Svetlana Popova","doi":"10.3109/13668250.2025.2547408","DOIUrl":"10.3109/13668250.2025.2547408","url":null,"abstract":"<p><strong>Background: </strong>Fetal alcohol spectrum disorder (FASD) has implications for wellbeing across the lifespan. Research regarding adult profiles is limited.</p><p><strong>Method: </strong>Data were drawn from the Canadian National Database for younger (18-24 years n = 223) and older (35 + years n = 185) groups, all diagnosed with FASD using Canadian guidelines. Groups were compared on: cognitive/functional abilities; physical/mental health; substance misuse; independent living; legal involvement; and recommendations post-diagnosis. Analysis included chi-square, ANOVA, and linear regression.</p><p><strong>Results: </strong>The 35 + group showed lower rates of attention and executive functioning deficits, less need for supportive housing, and fewer difficulties with independent living but higher rates of memory and physical problems. Substance misuse, legal involvement, and mental health issues were high in both groups. The 35 + group attended substance misuse treatment and were referred for income supports more than the 18-24 group.</p><p><strong>Conclusion: </strong>Distinct profiles were observed for older versus younger adults with FASD. Interventions and supports must be adjusted to meet age-specific needs.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"105-114"},"PeriodicalIF":1.2,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144978024","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}