Journal of Intellectual & Developmental Disability最新文献_第10页

Understanding parental physical activity behaviours in parents of children with disabilities: An expanded theory of planned behaviour approach. 理解残疾儿童父母的身体活动行为:计划行为方法的扩展理论

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2023-06-01 Epub Date: 2022-08-23 DOI: 10.3109/13668250.2022.2104448

Byungmo Ku, Justin A Haegele

{"title":"Understanding parental physical activity behaviours in parents of children with disabilities: An expanded theory of planned behaviour approach.","authors":"Byungmo Ku, Justin A Haegele","doi":"10.3109/13668250.2022.2104448","DOIUrl":"10.3109/13668250.2022.2104448","url":null,"abstract":"Background: The purpose of the current study was to examine association between physical activity (PA) of parents of children with developmental disabilities and theory of planned behaviour-related variables.Methods: A total of 95 participants completed questionnaires that measured the following variables: PA behaviours, action planning, intention, affective attitude, instrumental attitude. A path analysis was used to examine the associations between the variables.Results: Among participants, 40% did not meet the PA guideline. PA affective attitude was positively associated with PA intention (β = 0.30, p = .009) and PA action planning (β = .22, p = .03). In turn, both PA intention and PA action planning were associated with moderate-to-vigorous PA in parents of children with developmental disabilities (β = 0.23, p = .008; β = 0.52, p < .001, respectively).Conclusion: Physical activity in parents of children with developmental disabilities were appropriately explained by theory of planned behaviour-related variables.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"117-126"},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42730509","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

Use of health and dental care services in adults with intellectual disability in relation to age and intellectual disability levels. 与年龄和智力残疾程度相关的智力残疾成人的保健和牙科保健服务的使用情况

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2023-06-01 Epub Date: 2022-10-18 DOI: 10.3109/13668250.2022.2109823

Monica Isabel Olsen, Erik Søndenaa, Ellen Melbye Langballe, Marianne Berg Halvorsen, Per Wilhelmsen, Erik Bautz-Holter, Audny Anke

{"title":"Use of health and dental care services in adults with intellectual disability in relation to age and intellectual disability levels.","authors":"Monica Isabel Olsen, Erik Søndenaa, Ellen Melbye Langballe, Marianne Berg Halvorsen, Per Wilhelmsen, Erik Bautz-Holter, Audny Anke","doi":"10.3109/13668250.2022.2109823","DOIUrl":"10.3109/13668250.2022.2109823","url":null,"abstract":"Background: This study investigates the use of health and dental care services in adults with intellectual disability in the last 12 months according to Norwegian recommendations and in relation to age and intellectual disability levels.Method: A cross-sectional community-based survey including 214 participants (56% men). POMONA health indicators were used for data collection.Results: Health checks and contact with general practitioners in the last year increased with age but were less frequent in those with more severe intellectual disability. Hospital admissions were age independent. Less than one-fifth of women had undergone cancer screening, with small variations according to intellectual disability severity levels. Few had an individual plan. More than one-third experienced poor dental health despite frequent controls.Conclusions: The use of health checks was lower than recommended, especially in individuals with more severe intellectual disability. Service access and individual plan use need to be enhanced, and dental care services should be improved.Trial registration: ClinicalTrials.gov identifier: NCT03889002.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"172-183"},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46886762","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

Sexual behaviours of individuals with developmental disabilities in South Korea: A qualitative study exploring the views and experiences of professionals. 韩国发育障碍个体的性行为:一项探讨专业人士观点和经验的定性研究

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2023-06-01 Epub Date: 2022-11-16 DOI: 10.3109/13668250.2022.2137749

Euwon Joh, Kyoung Min Shin, Kawon Kim, Johanna Inhyang Kim, Sojung Kim

{"title":"Sexual behaviours of individuals with developmental disabilities in South Korea: A qualitative study exploring the views and experiences of professionals.","authors":"Euwon Joh, Kyoung Min Shin, Kawon Kim, Johanna Inhyang Kim, Sojung Kim","doi":"10.3109/13668250.2022.2137749","DOIUrl":"10.3109/13668250.2022.2137749","url":null,"abstract":"Background: Despite the considerable number of young adults with developmental disabilities experiencing sexual desire and exhibiting sexual behaviours as part of their natural biological growth and development, there is a lack of research on effective intervention. This study aimed to explore the views and experiences of professionals on the sexual behaviours of individuals with developmental disabilities.Methods: Semi-structured interviews with eight professionals specialising in developmental disabilities and/or inappropriate sexual behaviours were conducted, and their responses were analysed using a qualitative method.Results: Professionals' experiences were categorised into three based on the groups involved in intervention: people with developmental disabilities (desire, factors leading to lack of desire fulfilment), their family/parents (emotions and cognition/behaviours toward their child's disability and sexuality), and professionals (current intervention method, lack of human/material resources).Conclusion: Based on these findings, we suggest future directions for interventions to address sexual behaviours among individuals with developmental disabilities.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"184-195"},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47485599","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

A preliminary firesetting offence chain for adults with intellectual and other developmental disabilities. 针对智力和其他发育障碍成年人的初步纵火犯罪链

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2023-06-01 Epub Date: 2022-03-13 DOI: 10.3109/13668250.2022.2037186

J Collins, M Barnoux, P E Langdon

{"title":"A preliminary firesetting offence chain for adults with intellectual and other developmental disabilities.","authors":"J Collins, M Barnoux, P E Langdon","doi":"10.3109/13668250.2022.2037186","DOIUrl":"10.3109/13668250.2022.2037186","url":null,"abstract":"Background: The theoretical understanding of firesetting behaviour has predominantly been developed with men in prisons or psychiatric hospitals without neurodevelopmental disabilities. Consequently, there is a lack of evidence regarding the validity of current theory when applied to adults with intellectual disabilities and/or autism.Method: Thirteen adults in England with intellectual and other developmental disabilities were interviewed about the affective, cognitive, behavioural, and contextual factors leading up to and surrounding a recorded firesetting incident. Interviews were analysed using a Grounded Theory approach.Results: The resulting model consists of four phases: (1) background, (2) early adulthood, (3) pre-offence period, and (4) offence, and post offence period.Conclusion: The model accounts for unique precursors to firesetting including mental health deterioration, poor problem solving, and new motivations for firesetting. Unlike other offence chain theories, the significance of post-offence behaviour and cognitions are highlighted.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"146-160"},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48011574","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

Psychological adjustment of siblings of children with Prader-Willi syndrome. 普瑞德-威利综合征患儿兄弟姐妹的心理调整

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2023-06-01 Epub Date: 2022-11-02 DOI: 10.3109/13668250.2022.2132630

Laura Bennett Murphy, Jane Thornton, Emma Thornton

{"title":"Psychological adjustment of siblings of children with Prader-Willi syndrome.","authors":"Laura Bennett Murphy, Jane Thornton, Emma Thornton","doi":"10.3109/13668250.2022.2132630","DOIUrl":"10.3109/13668250.2022.2132630","url":null,"abstract":"Background: Siblings of children with Prader-Willi syndrome (PWS) may be at elevated risk for poor psychological adjustment (Mazaheri, M. M., Rae-Seebach, R. D., Preston, H. E., Schmidt, M., Kountz-Edwards, S., Field, N., Cassidy, S., Packman, Wet al. (2013). The impact of Prader-Willi syndrome on the family's quality of life and caregiving, and the unaffected siblings' psychosocial adjustment. Journal of Intellectual Disability Research, 57(9), 861-873. ; O'Neill, L. P., & Murray, L. E. (2016). Anxiety and depression symptomatology in adult siblings of individuals with different developmental disability diagnoses. Research in Developmental Disabilities, 51, 116-125. ). The current study describes psychological distress and symptoms of post-traumatic stress disorder (PTSD) in non-disabled siblings.Method: Fifty-eight siblings and 86 parents participated.Results: Parents reported that almost 40% of siblings had psychological symptoms that exceeded clinical cut-off scores; 58.9% of siblings reported symptoms of PTSD that exceeded diagnostic cut-off scores. Symptoms were significantly related to family organisation and control per parent report and negative affect per sibling report.Conclusion: Growing up with a sibling with PWS may challenge adaptive resources of non-disabled siblings, leaving them vulnerable to psychological distress. Those who care for children with PWS are in a unique position to educate families about the potential vulnerability of non-disabled siblings. We encourage routine screening and support for affected family members, especially siblings.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"196-205"},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46910025","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

Vulnerable but stronger together: An interpretative phenomenological analysis of the experiences of mothers of young adults with profound intellectual and multiple disabilities during the COVID-19 pandemic. 脆弱但团结更强:对患有严重智力残疾和多重残疾的青年成人母亲在2019冠状病毒病大流行期间经历的解释性现象学分析

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2023-06-01 Epub Date: 2022-11-08 DOI: 10.3109/13668250.2022.2135174

M C den Boer, M A C Voermans, P J C M Embregts

{"title":"Vulnerable but stronger together: An interpretative phenomenological analysis of the experiences of mothers of young adults with profound intellectual and multiple disabilities during the COVID-19 pandemic.","authors":"M C den Boer, M A C Voermans, P J C M Embregts","doi":"10.3109/13668250.2022.2135174","DOIUrl":"10.3109/13668250.2022.2135174","url":null,"abstract":"Background: Mothers of young adults with profound intellectual and multiple disabilities that live at home are less likely to be on the radar of formal services. We explored the experience of these mothers over the course of the COVID-19 pandemic.Methods: A qualitative study using three case studies. Transcripts were analysed using Interpretative Phenomenological Analysis.Results: Two overarching themes with various subthemes emerged. The first theme focuses on the impact of being a mother of a young adult with profound intellectual and multiple disabilities who lives at home during the COVID-19 pandemic. The second theme describes both the vulnerability and resilience of the broader system, as well as its need to experience togetherness.Conclusions: Families of a young adult with profound intellectual and multiple disabilities exhibit both resilience and vulnerability during the COVID-19 pandemic, underscoring the importance to support and promote the visibility of these families.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"215-223"},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10153060/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45831826","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

The juncture and disjuncture of service delivery systems in post-parental care planning for rural people with intellectual disabilities. 农村智力残疾者父母后照护规划中服务提供体系的衔接与脱节

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2023-06-01 Epub Date: 2022-10-03 DOI: 10.3109/13668250.2022.2098095

Stuart Wark, Lia Bryant, Tyson Morales-Boyce, Kate Deuter

{"title":"The juncture and disjuncture of service delivery systems in post-parental care planning for rural people with intellectual disabilities.","authors":"Stuart Wark, Lia Bryant, Tyson Morales-Boyce, Kate Deuter","doi":"10.3109/13668250.2022.2098095","DOIUrl":"10.3109/13668250.2022.2098095","url":null,"abstract":"Background: Australian research indicates that post-parental care transitions are rarely planned and primarily occur following a crisis for a primary carer. This paper examines disability staff perceptions of transitions for people with intellectual disability and their ageing carers in rural South Australia.Method: A focus group interview model was used, with a semi-structured interview guide initiating group discussions. A thematic analysis methodological approach was selected to analyse the data.Results: This paper reports on the theme of Service Delivery, which has three sub-themes of Availability; Distance; and Individual Access. The key findings are presented and supported by the use of exemplar quotes.Conclusions: This research indicates a poor intersection of general and specialist services is inhibiting post-parental transitional care for rural people. Simply allocating money to the individual does not resolve the issues, and the interface between different services needs to be better considered at government level.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"127-137"},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48120986","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

A questionnaire to measure direct support professionals' attitude towards healthy nutrition of people with intellectual disabilities. 一份测量直接支持专业人员对智障人士健康营养态度的问卷

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2023-06-01 Epub Date: 2022-10-16 DOI: 10.3109/13668250.2022.2106696

A Overwijk, W P Krijnen, T I M Hilgenkamp, C P van der Schans, A A J van der Putten, A Waninge

{"title":"A questionnaire to measure direct support professionals' attitude towards healthy nutrition of people with intellectual disabilities.","authors":"A Overwijk, W P Krijnen, T I M Hilgenkamp, C P van der Schans, A A J van der Putten, A Waninge","doi":"10.3109/13668250.2022.2106696","DOIUrl":"10.3109/13668250.2022.2106696","url":null,"abstract":"Background: Direct support professionals' (DSPs') attitudes toward nutrition are important for supporting a healthy lifestyle of persons with intellectual disabilities. However, there are no instruments to measure it. The aim of this study was to compose a questionnaire and determine its internal validity.Method: The previously validated Health Enhancing Physical Activity questionnaire was adapted into the Attitude of DSPs for Health Enhancing Nutrition (ADSP-HENU) and completed by 31 DSPs. The internal validity of the questionnaire was investigated by Cronbach's Alpha and an exploratory non-parametric item response analysis (NIRT).Results: The internal consistency by Cronbach's Alpha was good (0.87, 95% CI [0.81-0.94]). NIRT showed monotonicity with wide confidence bounds and sufficient point polyserial correlations of the items. This indicates that each attributes to the overall measured attitude.Conclusion: The internal validity of the ADSP-HENU is promising, and it can be used in daily practice for evaluation or adapting interventions to DSPs' needs.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"138-145"},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47402359","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

Parents' experiences of raising adolescents with intellectual or developmental disabilities. 父母养育有智力或发育障碍的青少年的经验

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2023-06-01 Epub Date: 2022-05-18 DOI: 10.3109/13668250.2022.2057843

John Kerr, John Sharry, Charlotte Wilson

{"title":"Parents' experiences of raising adolescents with intellectual or developmental disabilities.","authors":"John Kerr, John Sharry, Charlotte Wilson","doi":"10.3109/13668250.2022.2057843","DOIUrl":"10.3109/13668250.2022.2057843","url":null,"abstract":"Background: Parents of children with intellectual or developmental disabilities have unique challenges in navigating the developmental period of adolescence. The present study explored the experiences of parents connected with disability services throughout the island of Ireland of parenting their child during adolescence.Method: Five focus groups were conducted with twenty-five parents of adolescents and young adults with intellectual or developmental disabilities. Parents were asked open-ended questions about their experiences of raising their adolescent child. Transcripts of the focus groups were coded using reflexive thematic analysis.Results: On the journey from childhood to adolescence parents have to manage a number of different stressors with and for their child. These occur at societal, service provision, familial, and personal levels, with each stressor interacting with others to create vicious circles of struggle.Conclusions: Parents' struggles are multi-fold, and are not discreet entities that can be separated. The struggle is dynamic and continuous.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"206-214"},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43961553","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

"Continuously struggling for balance": The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities. “不断为平衡而奋斗”：荷兰父母照顾智力和多重残疾儿童的生活经历

IF 1.9 4区医学

Journal of Intellectual & Developmental Disability Pub Date : 2023-06-01 Epub Date: 2022-05-29 DOI: 10.3109/13668250.2022.2073707

Liesbeth Geuze, Anne Goossensen, Samuel Schrevel

{"title":"\"Continuously struggling for balance\": The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities.","authors":"Liesbeth Geuze, Anne Goossensen, Samuel Schrevel","doi":"10.3109/13668250.2022.2073707","DOIUrl":"10.3109/13668250.2022.2073707","url":null,"abstract":"Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon \"parenting a child with PIMD.\"Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used.Findings: The essential meaning of the phenomenon was understood as \"continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.\" The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns.Conclusions: Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents' challenges offers them the possibility to participate in society. Healthcare professionals should address the parents' perspectives related to the child's quality of life.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"161-171"},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46237855","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