Journal of Intellectual & Developmental Disability最新文献

Employment experiences and challenges of parents supporting young people with intellectual disabilities in Harbin, China.

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-04-02 DOI: 10.3109/13668250.2025.2480536

Xu Wang, Yingjin Cui, Xianglin Fan

引用次数: 0

A qualitative study of the emotion regulation experiences of children and adolescents with intellectual disabilities: "Because it helps my brain to calm down".

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-03-24 DOI: 10.3109/13668250.2025.2474197

Mary Girgis, Josephine Paparo, Ian Kneebone

{"title":"A qualitative study of the emotion regulation experiences of children and adolescents with intellectual disabilities: \"Because it helps my brain to calm down\".","authors":"Mary Girgis, Josephine Paparo, Ian Kneebone","doi":"10.3109/13668250.2025.2474197","DOIUrl":"https://doi.org/10.3109/13668250.2025.2474197","url":null,"abstract":"Background: Children and adolescents with intellectual disabilities are prone to developing emotion dysregulation difficulties. The process model of emotion regulation may offer a comprehensive structure by which to understand this phenomenon.Method: Seventeen children and adolescents with intellectual disabilities participated in semi-structured interviews on their experience of emotion regulation. Reflexive thematic analysis was used to analyse the data obtained.Results: The applicability of the process model of emotion regulation for children and adolescents with intellectual disabilities was confirmed. Additional themes and sub-themes relevant to the model were also identified. Discrepancies in emotion regulation experiences were noted between autistic and non-autistic children and adolescents with intellectual disabilities.Conclusions: The process model was found to be relevant to children and adolescents with intellectual disabilities. The identified themes and sub-themes could guide the development of outcome measures founded on the model for this population.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-12"},"PeriodicalIF":1.9,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143694399","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

Personal Outcomes Scale for persons with intellectual disability in Denmark: A preliminary study on validity and reliability.

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-03-16 DOI: 10.3109/13668250.2025.2475524

Mizuho Tatsuta, Norimune Kawai, Michio Ushiyama, Marco Lombardi

{"title":"Personal Outcomes Scale for persons with intellectual disability in Denmark: A preliminary study on validity and reliability.","authors":"Mizuho Tatsuta, Norimune Kawai, Michio Ushiyama, Marco Lombardi","doi":"10.3109/13668250.2025.2475524","DOIUrl":"10.3109/13668250.2025.2475524","url":null,"abstract":"Background: Quality-of-life assessments for persons with intellectual disability are crucial for enhancing support and services. However, culturally adapted instruments are scarce in many countries. This preliminary study explored the psychometric properties of the Personal Outcomes Scale in the Danish context, examining self-report and other-report measures.Method: Data were collected from 102 persons with intellectual disability (59 men, 43 women; Mage = 35.55 ± 13.48 years) and 72 support workers. Internal consistency, inter-rater reliability, and known group validity were examined.Results: The scale indicated adequate internal consistency overall (self-reports: α = .80; other-reports: α = .87), although domain-level patterns revealed cultural variations. Inter-rater reliability varied across domains and known groups validity analysis showed significant differences across disability levels and age groups.Conclusion: This preliminary validation suggests welfare state structures influence QOL measurement, highlighting areas requiring cultural adaptation. Further validation is warranted.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-13"},"PeriodicalIF":1.9,"publicationDate":"2025-03-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143651887","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

Fostering self-advocacy development in service-based self-advocacy groups.

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-03-15 DOI: 10.3109/13668250.2025.2474199

John Mc Carthy, Valerie McTaggart

{"title":"Fostering self-advocacy development in service-based self-advocacy groups.","authors":"John Mc Carthy, Valerie McTaggart","doi":"10.3109/13668250.2025.2474199","DOIUrl":"https://doi.org/10.3109/13668250.2025.2474199","url":null,"abstract":"Background: While the importance of self-advocacy for those with an intellectual disability is well recognised, little is known about how organisations can support self-advocacy development by implementing self-advocacy groups.Method: This inclusive research study collected empirical data from fourteen self-advocates, two managers, three group supporters, and one advocacy coordinator, all experienced and involved in an established not-for-profit service-based self-advocacy group.Results: Our findings identified several benefits of being involved in a self-advocacy group, including confidence-building, belonging, social inclusion, empowerment and affecting positive social change for the wider community. To ensure the success of self-advocacy groups, there must be \"A Space and Place\", \"Meaningful Inclusion\", and \"Learning to Lead Opportunities\".Conclusion: Despite the positive benefits associated with self-advocacy, challenges remain. Society's expectations about self-advocacy are often not translated into practice, inclusion can be superficial, and a balance between independence and assistance is difficult to achieve where support is required.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-13"},"PeriodicalIF":1.9,"publicationDate":"2025-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143634759","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

Inclusion of people with intellectual disability in the decision-making and governance of disability and community organisations. 让智障人士参与残疾人和社区组织的决策和管理。

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-03-14 DOI: 10.3109/13668250.2025.2458124

Bernadette Curryer, Michelle Donelly, Kim Roots, Margaret Spencer, Will Harding, Katrina Sneath

{"title":"Inclusion of people with intellectual disability in the decision-making and governance of disability and community organisations.","authors":"Bernadette Curryer, Michelle Donelly, Kim Roots, Margaret Spencer, Will Harding, Katrina Sneath","doi":"10.3109/13668250.2025.2458124","DOIUrl":"https://doi.org/10.3109/13668250.2025.2458124","url":null,"abstract":"Background: The value of people with disability being involved in the decision-making and governance of community organisations is increasingly being recognised. This paper reports on research that aims to understand governance models that promote the recruitment, decision-making, and leadership of people with intellectual disability.Method: A descriptive phenomenological analysis of 27 semi-structured interviews was conducted. The participants were board members with intellectual disability (n = 5), board members with a disability other than intellectual (n = 6), board members without disability (n = 4), senior management staff (n = 8), and board support people (n = 4).Results: Five themes emerged from the data. These themes reflect the impact of inclusion, pathways of skill development, accessibility requirements, the provision of skilled support, and the concerns that create a barrier to inclusion.Conclusion: Inclusive governance appears to work best when organisations value and commit to inclusion, setting up skill development pathways to governance roles, with accessible practices and individualised support.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-14"},"PeriodicalIF":1.9,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143626691","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

Healthcare utilisation and characteristics of adults with fetal alcohol syndrome: a descriptive population-based cohort study in Ontario, Canada.

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-03-10 DOI: 10.3109/13668250.2025.2449677

Danijela Dozet, Claire de Oliveira, Yona Lunsky, Andrew Calzavara, Svetlana Popova

{"title":"Healthcare utilisation and characteristics of adults with fetal alcohol syndrome: a descriptive population-based cohort study in Ontario, Canada.","authors":"Danijela Dozet, Claire de Oliveira, Yona Lunsky, Andrew Calzavara, Svetlana Popova","doi":"10.3109/13668250.2025.2449677","DOIUrl":"https://doi.org/10.3109/13668250.2025.2449677","url":null,"abstract":"Background: Adults with Fetal Alcohol Syndrome (FAS) experience many adverse health and social outcomes, yet their healthcare utilisation is under-researched.Method: This population-based descriptive cohort study utilised ICES provincial administrative health databases and Canadian Death Vital Statistics to identify adults with FAS via usage of hospital-based services (2002-2013) and examine their demographics, healthcare utilisation, mental health and addiction diagnoses, and mortality during follow-up (2014-2017).Results: 565 adults with FAS were included in the cohort. During the follow-up period, 27% used in-patient psychiatric care; 30% the emergency department 12 + times; 28% were hospitalised at least once; and 17% used home care services. They displayed high rates of physical and mental health comorbidities, substance use disorders, history of abuse, and income from social assistance.Conclusion: Adults with FAS require accessible and extensive healthcare services to address their complex needs and improve long-term outcomes.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-14"},"PeriodicalIF":1.9,"publicationDate":"2025-03-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143598356","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

Caregivers' experiences with diagnosis of fetal alcohol spectrum disorder: A life-course approach.

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-03-03 DOI: 10.3109/13668250.2025.2459822

Joanna T W Chu, Nikki Singh, Jessica C McCormack, Andre D McLachlan, Janell Dymus-Kurei, Holly Wilson, Samantha Marsh, David Newcombe

{"title":"Caregivers' experiences with diagnosis of fetal alcohol spectrum disorder: A life-course approach.","authors":"Joanna T W Chu, Nikki Singh, Jessica C McCormack, Andre D McLachlan, Janell Dymus-Kurei, Holly Wilson, Samantha Marsh, David Newcombe","doi":"10.3109/13668250.2025.2459822","DOIUrl":"10.3109/13668250.2025.2459822","url":null,"abstract":"Background: Fetal alcohol spectrum disorder (FASD) is a developmental disability. A diagnosis of FASD is vital for support and wellbeing. However, receiving a diagnosis can be challenging. The aim of this research was to understand the experiences and impact of diagnosis for caregivers of those with FASD in New Zealand.Method: We conducted focus groups with caregivers and whānau (family) to explore their experiences with FASD. The transcripts were analysed using reflexive thematic analysis.Results: We identified three themes across the life course of diagnosis, barriers to diagnosis, meaning of diagnosis and life with diagnosis.Conclusion: A diagnosis is vital for caregivers of those with FASD. However, it is difficult to access a diagnosis in New Zealand due to professionals' lack of training, knowledge, and inadequate professional support. It is essential to build our professionals workforce competence and skills of FASD.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":" ","pages":"1-10"},"PeriodicalIF":1.9,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143542937","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

Executive function abilities in Mexican people with Down syndrome during the COVID-19 pandemic.

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-03-01 Epub Date: 2024-10-09 DOI: 10.3109/13668250.2024.2410846

Julia B Barrón-Martínez, Judith Salvador-Cruz

{"title":"Executive function abilities in Mexican people with Down syndrome during the COVID-19 pandemic.","authors":"Julia B Barrón-Martínez, Judith Salvador-Cruz","doi":"10.3109/13668250.2024.2410846","DOIUrl":"https://doi.org/10.3109/13668250.2024.2410846","url":null,"abstract":"Background: The aim was to explore the executive function profile of a group of Mexican people with Down syndrome (DS) aged 12-30 years during the COVID-19 pandemic.Aim: To analyse the relationships between mental, chronological age and eight domains of executive function.Method: Participants were 42 people with DS with a chronological age (CA) of 12-30 years and a mean nonverbal mental age (MA) of 7 years. MA was evaluated with Raven's Progressive Matrices test and executive function with the Behaviour Rating Inventory of Executive Function (BRIEF-2); both were administered online.Results: The Monitor, Emotional Control, Initiative, and Organisation of Materials scales showed strengths, while Working Memory, Plan/Organise, Shift, and Inhibit scales showed weaknesses. CA correlated negatively with seven of the eight executive domains. Chronologically older participants showed less impairment in skills such as inhibition, emotional control, working memory, and monitoring. Nonverbal MA correlated negatively with two domains: emotional control and monitoring.Conclusion: Participants' executive profile during the COVID-19 pandemic was consistent with that reported in studies prior to the pandemic.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"50 1","pages":"116-126"},"PeriodicalIF":1.9,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143434354","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

Peer-led self-advocacy for people with intellectual disability through the lens of "freedom through encounter".

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-03-01 Epub Date: 2024-09-26 DOI: 10.3109/13668250.2024.2402917

Michelle Bellon, Sandra Gendera, Sally Robinson, Tim Cahalan, Karen R Fisher

{"title":"Peer-led self-advocacy for people with intellectual disability through the lens of \"freedom through encounter\".","authors":"Michelle Bellon, Sandra Gendera, Sally Robinson, Tim Cahalan, Karen R Fisher","doi":"10.3109/13668250.2024.2402917","DOIUrl":"https://doi.org/10.3109/13668250.2024.2402917","url":null,"abstract":"Background: A peer-led self-advocacy group, Our Voice SA, is used as a case study to explore how the social engagement of people with intellectual disability contributed to their self-advocacy about things that are important to them.Method: Secondary analyses of data (interviews, observations and program data) were thematically analysed using Clifford Simplican's analytical lens of \"freedom through encounter\".Results: Social engagement encounters in peer-led self-advocacy led to individual and group agency for freedom. The findings explore becoming known, seen, and heard; freedom to express what matters; and unfreedom: silencing self-advocacy.Conclusion: A \"freedom through encounter\" lens is a useful perspective on how people navigate social inclusion to participate and challenge expectations. Allies were critical for overcoming structural, interdependent barriers, and supporting capacity for leadership and rights awareness that helped elevate the confidence and skills of people with intellectual disability to speak up.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"50 1","pages":"1-9"},"PeriodicalIF":1.9,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143434366","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

Knowledge, attitudes and practices towards fetal alcohol spectrum disorder among healthcare workers in New Zealand.

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2025-03-01 Epub Date: 2024-09-25 DOI: 10.3109/13668250.2024.2404167

Joanna Ting Wai Chu, Holly Wilson, Sophia Pi, Jessica C McCormack, Samantha Marsh, David Newcombe, Chris Bullen

{"title":"Knowledge, attitudes and practices towards fetal alcohol spectrum disorder among healthcare workers in New Zealand.","authors":"Joanna Ting Wai Chu, Holly Wilson, Sophia Pi, Jessica C McCormack, Samantha Marsh, David Newcombe, Chris Bullen","doi":"10.3109/13668250.2024.2404167","DOIUrl":"https://doi.org/10.3109/13668250.2024.2404167","url":null,"abstract":"Background: Fetal alcohol spectrum disorder (FASD) is a highly prevalent neurodevelopmental disability caused by prenatal alcohol exposure (PAE). Healthcare professionals (HCP) are key in prevention, diagnosis, and supporting individuals with FASD. This study explored the FASD knowledge, attitudes, and practices among HCP in Aotearoa, New Zealand (NZ).Methods: We conducted an online survey of HCP working in NZ. The survey measured knowledge of FASD, beliefs and attitudes about FASD, experiences and practices with FASD and future training.Results: Of the 96 participants, more than 90% self-reported a good or very good understanding of FASD, and around half had a patient with FASD. However, less than half felt prepared to support someone with FASD. Participants identified lack of professional training, services, and funding as barriers to support individuals with FASD.Conclusion: We identified a need to provide training and promote awareness and recognition for HCP to support individuals with FASD.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"50 1","pages":"10-20"},"PeriodicalIF":1.9,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143434363","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