Journal of Intellectual & Developmental Disability最新文献_第3页

Quality of life predictors for individuals with intellectual disability: Cross-sectional proxy-report data from a multicentre study. 智力残疾个体的生活质量预测因素：来自多中心研究的横断面代理报告数据。

IF 1.2 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-08-04 DOI: 10.3109/13668250.2025.2532918

Juan Luis Blanco-López, Diego Fernández-Lázaro, Leticia Sánchez-Valdeón, Jesús Seco-Calvo

{"title":"Quality of life predictors for individuals with intellectual disability: Cross-sectional proxy-report data from a multicentre study.","authors":"Juan Luis Blanco-López, Diego Fernández-Lázaro, Leticia Sánchez-Valdeón, Jesús Seco-Calvo","doi":"10.3109/13668250.2025.2532918","DOIUrl":"https://doi.org/10.3109/13668250.2025.2532918","url":null,"abstract":"Background: This research investigated quality of life (QoL) predictors in Spanish adults with intellectual and developmental disabilities. Individuals with high versus low-support intensity levels were compared.Method: In this cross-sectional study, 396 participants were divided into two groups based on support intensity and their QoL was evaluated using validated proxy-report measures (INICO-FEAPS/San Martín). Hierarchical regression analysis was conducted for 19 variables (QoL predictors) relating to personal characteristics, support needs, and environment.Results: Findings demonstrated distinct QoL predictors for the two groups: recorded intellectual disability etiology; mental health status; living environment, adaptive behaviour; and institutionalisation were significant for the low-support intensity group, while adaptive behaviour and behavioural disorders were significant for the high-support intensity group.Conclusion: Different variables affect QoL for low and high-support intensity groups and highlight potential benefits of personalised care based on individual dependency levels.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-16"},"PeriodicalIF":1.2,"publicationDate":"2025-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144776788","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}

引用次数: 0

Construct validity of an adult pain observation scale for people with profound intellectual and multiple disabilities: The APOS-PIMD. 深度智力和多重残疾成人疼痛观察量表的效度构建：APOS-PIMD。

IF 1.2 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-07-29 DOI: 10.3109/13668250.2025.2531706

Annemieke Enninga, Wendy J Post, Aly Waninge, Annette A J van der Putten

{"title":"Construct validity of an adult pain observation scale for people with profound intellectual and multiple disabilities: The APOS-PIMD.","authors":"Annemieke Enninga, Wendy J Post, Aly Waninge, Annette A J van der Putten","doi":"10.3109/13668250.2025.2531706","DOIUrl":"https://doi.org/10.3109/13668250.2025.2531706","url":null,"abstract":"Background: Objective assessment of pain-related behaviours is crucial in adults with profound intellectual and multiple disabilities. No standardised pain observation instrument that specifically focuses on this target group is currently available. A previous study identified 12 pain-related behaviours in these persons. This study aimed to develop a valid and reliable instrument based on these 12 pain-related behaviours to assess pain in these adults in daily situations.Method: Videos of 91 adults with profound intellectual and multiple disabilities in potentially painful daily situations were scored using the 12 pain-related behaviour items. Mokken scale analysis was used to determine the construct validity of these items.Results: Analysis resulted in a 9-item scale (H = .46, Rho = .70), which appeared to be sample independent for the variables of sex, age and level of motor functioning.Conclusion: A scale containing 9 items (APOS-PIMD) with reasonable construct validity and sufficient reliability was developed, which can be used to measure pain in adults with profound intellectual and multiple disabilities in daily situations.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-10"},"PeriodicalIF":1.2,"publicationDate":"2025-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144735227","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}

引用次数: 0

The family quality of life survey-2006: an examination of relationships between objective and subjective data. 家庭生活质量调查-2006：客观数据与主观数据之间关系的检验。

IF 1.2 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-07-28 DOI: 10.3109/13668250.2025.2535873

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":"https://doi.org/10.3109/13668250.2025.2535873","url":null,"abstract":"Background: 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).Method: 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.Results: 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.Conclusion: 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.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-9"},"PeriodicalIF":1.2,"publicationDate":"2025-07-28","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}

引用次数: 0

Evaluation of a comprehensive literacy program in primary school students with intellectual disabilities in single case studies. 以单一个案研究评估智障小学生综合扫盲计划。

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-07-22 DOI: 10.3109/13668250.2025.2531710

Marc Tebbe, Jan Kuhl, Carmen L A Zurbriggen

{"title":"Evaluation of a comprehensive literacy program in primary school students with intellectual disabilities in single case studies.","authors":"Marc Tebbe, Jan Kuhl, Carmen L A Zurbriggen","doi":"10.3109/13668250.2025.2531710","DOIUrl":"https://doi.org/10.3109/13668250.2025.2531710","url":null,"abstract":"Background: The comprehensive literacy program Schoolmates, an adaptation of the program Friends on the Block, combines (high-frequency) sight word and phonics instruction for German-speaking students with intellectual disabilities.Method: A single-case multiple baseline design was used to assess the progress of nine primary school students with intellectual disabilities in reading practised sight words and simple syllables (basic decoding). Data were analysed using standardised visual inspection, non-overlapping indices and hierarchical piecewise linear regression.Results: Students demonstrated moderate improvement in reading sight words, with a significant effect on both the level and trend. Six out of nine students improved their basic decoding skills from the baseline to the follow-up phase.Conclusion: The comprehensive literacy program Schoolmates appeares to promote sight word reading among primary school students with intellectual disabilities. Future studies could investigate whether a higher frequency or longer duration of instruction affects basic decoding skills.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-13"},"PeriodicalIF":1.9,"publicationDate":"2025-07-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144692382","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}

引用次数: 0

Adverse childhood experiences in families with intellectual disabilities under family supervision orders: An exploratory cross-sectional study. 智障家庭在家庭监护下的不良童年经历：一项探索性横断面研究。

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-07-20 DOI: 10.3109/13668250.2025.2525663

Jessica Vervoort-Schel, Gabriëlle Mercera, Inge Wissink, Tessel Sterenborg, Maroesjka van Nieuwenhuijzen, Peer van der Helm, Ramón Lindauer, Xavier Moonen

{"title":"Adverse childhood experiences in families with intellectual disabilities under family supervision orders: An exploratory cross-sectional study.","authors":"Jessica Vervoort-Schel, Gabriëlle Mercera, Inge Wissink, Tessel Sterenborg, Maroesjka van Nieuwenhuijzen, Peer van der Helm, Ramón Lindauer, Xavier Moonen","doi":"10.3109/13668250.2025.2525663","DOIUrl":"https://doi.org/10.3109/13668250.2025.2525663","url":null,"abstract":"Background: Families with intellectual disabilities are overrepresented in child protection systems. However, little is known about how adverse experiences co-occur in this population. This study examined the prevalence and interrelations of original and extended adverse childhood experiences (ACEs) and contextual child and family variables in families with intellectual disabilities under family supervision orders (FSOs).Method: We conducted an exploratory cross-sectional analysis of 128 Dutch case files concerning children aged 0-17 under an FSO, using structured codebooks.Results: Children were exposed to M = 4.4 original ACEs (SD = 2.0); 66.4% experienced four or more. Extended ACEs (e.g., out-of-home placement) and family risk factors (e.g., parental mental health problems, limited social support) were common. Several significant interrelations emerged across child, parent, and resource domains.Conclusion: Findings highlight the need to address co-occurring adversities across family contexts when developing ACE-informed strategies in child protection settings.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-12"},"PeriodicalIF":1.9,"publicationDate":"2025-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144668990","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}

引用次数: 0

The impact of traumatic and stressful life events on the relatives of trauma-exposed adults with severe or moderate intellectual disabilities: "Each time a piece of your strength breaks off". 创伤性和压力性生活事件对严重或中度智力残疾的创伤暴露成人的亲属的影响：“每次你的力量都有一部分断裂”。

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-07-20 DOI: 10.3109/13668250.2025.2525661

Annemieke Hoogstad, Nienke Peters-Scheffer, Liesbeth Mevissen, Robert Didden

{"title":"The impact of traumatic and stressful life events on the relatives of trauma-exposed adults with severe or moderate intellectual disabilities: \"Each time a piece of your strength breaks off\".","authors":"Annemieke Hoogstad, Nienke Peters-Scheffer, Liesbeth Mevissen, Robert Didden","doi":"10.3109/13668250.2025.2525661","DOIUrl":"https://doi.org/10.3109/13668250.2025.2525661","url":null,"abstract":"Background: Adults with severe or moderate intellectual disabilities frequently experience traumatic events, placing them at higher risk for trauma-related disorders. Although these events also affect their relatives, their experiences have not been studied.Method: Thematic analysis was conducted on interviews with eight first-degree relatives of adults with severe or moderate intellectual disabilities who had experienced traumatic events, as identified through a trauma interview.Results: Four themes emerged: (1) the impact varied, with some relatives developing trauma-related symptoms; (2) characteristics of events in terms of severity and frequency, accompanied by feelings of helplessness, guilt, and inadequacy; (3) coping strategies, including social support, persevering and avoidance; and (4) the link between impact and long-term care for the client, potentially increasing relatives' susceptibility to complaints.Conclusion: Professionals must be aware of the effects of trauma on relatives of individuals with severe or moderate intellectual disabilities. Further research needs to explore differences among relatives.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-11"},"PeriodicalIF":1.9,"publicationDate":"2025-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144668991","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}

引用次数: 0

Exploring perceived usefulness and perceived ease of use of patient-led recording for adults with Down syndrome and their support people: A qualitative study. 探索感知有用性和感知易用性为成人唐氏综合症患者主导的记录及其支持人员：一项定性研究。

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-07-17 DOI: 10.3109/13668250.2025.2525664

Laura Ryan, Kathy Ellem, Robyne Le Brocque, Claire Mitchell, Luka Langdon

{"title":"Exploring perceived usefulness and perceived ease of use of patient-led recording for adults with Down syndrome and their support people: A qualitative study.","authors":"Laura Ryan, Kathy Ellem, Robyne Le Brocque, Claire Mitchell, Luka Langdon","doi":"10.3109/13668250.2025.2525664","DOIUrl":"https://doi.org/10.3109/13668250.2025.2525664","url":null,"abstract":"Background: People with Down syndrome often face communication barriers, cognitive limitations, and inadequate service responses during hospital clinical encounters, leading to poorer health outcomes. Patient-led recordings, where individuals use their own smart devices to capture clinical encounters, show promise in helping to address these issues. However, their use in this population remains unexplored.Method: Semi-structured interviews were conducted with 12 adults with Down syndrome and 12 nominated support people. Interviews were transcribed and analysed using a critical realist approach to thematic analysis.Results: Participants identified several benefits of patient-led recordings, including improved communication, enhanced comprehension, supported decision-making, increased empowerment, and positive emotional impacts. However, barriers such as awareness, accessibility, digital literacy, consent, and confidentiality concerns were noted.Conclusion: Patient-led recordings could improve healthcare experiences for some people with Down syndrome, but addressing key barriers is necessary for successful implementation.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-12"},"PeriodicalIF":1.9,"publicationDate":"2025-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144651174","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}

引用次数: 0

Learning from people with disabilities: Investigating effects on pre-service teachers' beliefs and practices in inclusive education. 向残疾人学习：调查对职前教师全纳教育的信念和实践的影响。

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-07-03 DOI: 10.3109/13668250.2025.2525659

Mia Hoffmann, Sonja Krämer, Friederike Zimmermann

{"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":"https://doi.org/10.3109/13668250.2025.2525659","url":null,"abstract":"Background: 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.Method: Using a pre-post-follow-up design, data were collected from N = 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.Results: 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.Conclusion: 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.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-12"},"PeriodicalIF":1.9,"publicationDate":"2025-07-03","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}

引用次数: 0

Disability group home residents and support worker perceptions of health communication during an infection outbreak: "Junk mail". 残疾团体之家居民和支助工作者对感染爆发期间健康沟通的看法：“垃圾邮件”。

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-06-30 DOI: 10.3109/13668250.2025.2504277

Joanne Watson, Olumuyiwa Omonaiye, Catherine M Bennett, Melissa J Bloomer, Jennifer Crosbie, Jennifer L David, Angela Dew, Patsie Frawley, Amie O'Shea, Meredith Prain, Susan Taylor, Dion Williams, Nathan J Wilson, Kate L M Anderson

{"title":"Disability group home residents and support worker perceptions of health communication during an infection outbreak: \"Junk mail\".","authors":"Joanne Watson, Olumuyiwa Omonaiye, Catherine M Bennett, Melissa J Bloomer, Jennifer Crosbie, Jennifer L David, Angela Dew, Patsie Frawley, Amie O'Shea, Meredith Prain, Susan Taylor, Dion Williams, Nathan J Wilson, Kate L M Anderson","doi":"10.3109/13668250.2025.2504277","DOIUrl":"https://doi.org/10.3109/13668250.2025.2504277","url":null,"abstract":"Background: During infection outbreaks people with intellectual disability face numerous challenges in accessing appropriate health information and guidance. This research sought to understand how information about infectious diseases was shared in Australian group homes, and what helps or hinders information access.Method: Semi-structured interviews were conducted with six residents and eight support workers during the COVID-19 pandemic (2021-2022), and observational tours of two residential group homes were also completed. Interviews and observations underwent thematic and content analysis.Results: Findings centred around five key themes: (i) the COVID-19 context; (ii) living in an information soup; (iii) seeking information from trusted sources; (iv) sharing information with others; and (v) the value of tailored communication support.Conclusion: Our study found that information sharing about infectious diseases in disability group homes was multidirectional and drew on both formal and informal sources. Inclusive information sharing in these settings demands a coordinated and tailored approach.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-12"},"PeriodicalIF":1.9,"publicationDate":"2025-06-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144530961","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}

引用次数: 0

Active ageing in people with intellectual disability: a qualitative evidence synthesis of the experiences, challenges, and pathways to support. 智障人士的积极老龄化：经验、挑战和支持途径的定性证据综合

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-06-27 DOI: 10.3109/13668250.2025.2517203

Daniel Acton, Grace Talbot, Caroline Mogan, Sujeet Jaydeokar

{"title":"Active ageing in people with intellectual disability: a qualitative evidence synthesis of the experiences, challenges, and pathways to support.","authors":"Daniel Acton, Grace Talbot, Caroline Mogan, Sujeet Jaydeokar","doi":"10.3109/13668250.2025.2517203","DOIUrl":"10.3109/13668250.2025.2517203","url":null,"abstract":"Background: Improved life expectancy, among individuals with intellectual disability, highlights unique health, social, and emotional challenges in ageing, including premature ageing, comorbidities, and access barriers to accessing care. This review explores whether current systems adequately address the holistic needs of ageing individuals with intellectual disability, emphasising the importance of person-centred support.Method: A qualitative evidence synthesis was undertaken using thematic synthesis to identify and analyse patterns across studies. A systematic search of eight databases was conducted, and 15 qualitative studies, published between 2010 and 2023, were included.Results: Five key themes were identified: challenges in managing physical health declines, reduction in personal autonomy and control, increased social isolation, uncertainty about future care, and age-related stigma, and discrimination.Conclusion: This review underscores the importance of a holistic, person-centred approach to supporting ageing individuals with intellectual disability. Addressing health and psychosocial needs, and advocating for inclusive service planning remains essential.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-13"},"PeriodicalIF":1.9,"publicationDate":"2025-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144509313","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}

引用次数: 0