Pub Date : 2023-03-30DOI: 10.3109/13668250.2023.2188876
R. Izquierdo-Gómez, I. Esteban‐Cornejo, V. Cabanas‐Sánchez, A. Marcos, S. Gómez-Martínez, J. Castro‐Piñero, Ó. Veiga
ABSTRACT Introduction The aims of this study were to examine cross-sectional, and longitudinal association of different measures of obesity and physical fitness with cardiovascular disease (CVD) risk factors in adolescents with Down syndrome. Methods Longitudinal analysis included 90 adolescents with Down syndrome. Obesity and physical fitness were measured following the ALPHA battery. Blood pressure and blood samplings (glucose, total cholesterol, high-density lipoprotein cholesterol, and serum lipid triglycerides levels (mg/dl) were determinated. Results In cross-sectional analyses, obesity was positively associated with single CVD risk factors and CVD risk factor index (all p < .05). In the prospective analyses, obesity was not associated with single CVD risk factors, but components of physical fitness at baseline impact in some single CVD risk factors (all p < .05). Conclusion Obesity might be more strongly related to current cardiovascular-health, while components of physical fitness might be more related to future cardiovascular-health in adolescents with Down syndrome.
{"title":"Are obesity and physical fitness associated with cardiovascular disease risk in adolescents with Down syndrome? The longitudinal UP&DOWN study","authors":"R. Izquierdo-Gómez, I. Esteban‐Cornejo, V. Cabanas‐Sánchez, A. Marcos, S. Gómez-Martínez, J. Castro‐Piñero, Ó. Veiga","doi":"10.3109/13668250.2023.2188876","DOIUrl":"https://doi.org/10.3109/13668250.2023.2188876","url":null,"abstract":"ABSTRACT Introduction The aims of this study were to examine cross-sectional, and longitudinal association of different measures of obesity and physical fitness with cardiovascular disease (CVD) risk factors in adolescents with Down syndrome. Methods Longitudinal analysis included 90 adolescents with Down syndrome. Obesity and physical fitness were measured following the ALPHA battery. Blood pressure and blood samplings (glucose, total cholesterol, high-density lipoprotein cholesterol, and serum lipid triglycerides levels (mg/dl) were determinated. Results In cross-sectional analyses, obesity was positively associated with single CVD risk factors and CVD risk factor index (all p < .05). In the prospective analyses, obesity was not associated with single CVD risk factors, but components of physical fitness at baseline impact in some single CVD risk factors (all p < .05). Conclusion Obesity might be more strongly related to current cardiovascular-health, while components of physical fitness might be more related to future cardiovascular-health in adolescents with Down syndrome.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-03-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48825802","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}
Pub Date : 2023-02-23DOI: 10.3109/13668250.2023.2166198
I. Bidaurrazaga-Letona, J. Diz, J. Torres-Unda, I. Esain, X. Monasterio, Biotz Zulueta, C. Ayán
ABSTRACT Background People with intellectual disability have poor balance skills and greater fall risk. The Short Physical Performance Battery (SPPB) provides comprehensive information on functional status and can predict fall risk. However, the reliability and validity of the SPPB have not been evaluated in people with intellectual disability. Methods Seventy-eight adults with intellectual disability were assessed using the SPPB twice. Reliability was analysed with intraclass correlation coefficient and validity was assessed against the Timed Up & Go (TUG) test and the stabilometric test using Spearman’s rho. Results Reliability was moderate to high in all SPPB components except for the semi-tandem and full tandem positions. The SPPB summary score indicated moderate test–retest reliability and showed mostly significant moderate associations with the TUG and poor agreement with the stabilometric test. Conclusions The SPPB summary score indicated high internal consistency, moderate reliability, and moderate validity when applied to adults with intellectual disability.
{"title":"Short Physical Performance Battery reliability and validity in adults with mild to moderate intellectual disability","authors":"I. Bidaurrazaga-Letona, J. Diz, J. Torres-Unda, I. Esain, X. Monasterio, Biotz Zulueta, C. Ayán","doi":"10.3109/13668250.2023.2166198","DOIUrl":"https://doi.org/10.3109/13668250.2023.2166198","url":null,"abstract":"ABSTRACT\u0000 Background People with intellectual disability have poor balance skills and greater fall risk. The Short Physical Performance Battery (SPPB) provides comprehensive information on functional status and can predict fall risk. However, the reliability and validity of the SPPB have not been evaluated in people with intellectual disability. Methods Seventy-eight adults with intellectual disability were assessed using the SPPB twice. Reliability was analysed with intraclass correlation coefficient and validity was assessed against the Timed Up & Go (TUG) test and the stabilometric test using Spearman’s rho. Results Reliability was moderate to high in all SPPB components except for the semi-tandem and full tandem positions. The SPPB summary score indicated moderate test–retest reliability and showed mostly significant moderate associations with the TUG and poor agreement with the stabilometric test. Conclusions The SPPB summary score indicated high internal consistency, moderate reliability, and moderate validity when applied to adults with intellectual disability.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-02-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49294531","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}
Pub Date : 2023-02-23DOI: 10.3109/13668250.2022.2158725
M. J. Smit, C. Emck, M. Scheffers, J. V. van Busschbach, P. Beek
ABSTRACT Background Research is lacking on body-related consequences of sexual abuse in adults with mild intellectual disability or borderline intellectual functioning (MID-BIF), although the prevalence of abuse is high and body- and movement-oriented diagnostics and therapeutics seem warranted for this group. Method Body experience in adults with MID-BIF who were sexually abused (SA) and were not sexually abused (NSA) was compared using a self-report instrument, the Body Experience Questionnaire-mb, and an instrument to observe non-verbal psychomotor behaviour, the PsyMot-mb. Results The SA group showed significantly higher self-reported body awareness and more observed problems with body acceptance than the NSA group. No significant group differences were found for self-reported body satisfaction and body attitude. Conclusions Adults with MID-BIF who were sexually abused are more aware of their body signals, but less able to adequately attend to, tolerate, and interpret these signals. Therefore, body- and movement-oriented therapies hold promise for this group.
{"title":"The impact of sexual abuse on body experience in adults with mild intellectual disability or borderline intellectual functioning","authors":"M. J. Smit, C. Emck, M. Scheffers, J. V. van Busschbach, P. Beek","doi":"10.3109/13668250.2022.2158725","DOIUrl":"https://doi.org/10.3109/13668250.2022.2158725","url":null,"abstract":"ABSTRACT Background Research is lacking on body-related consequences of sexual abuse in adults with mild intellectual disability or borderline intellectual functioning (MID-BIF), although the prevalence of abuse is high and body- and movement-oriented diagnostics and therapeutics seem warranted for this group. Method Body experience in adults with MID-BIF who were sexually abused (SA) and were not sexually abused (NSA) was compared using a self-report instrument, the Body Experience Questionnaire-mb, and an instrument to observe non-verbal psychomotor behaviour, the PsyMot-mb. Results The SA group showed significantly higher self-reported body awareness and more observed problems with body acceptance than the NSA group. No significant group differences were found for self-reported body satisfaction and body attitude. Conclusions Adults with MID-BIF who were sexually abused are more aware of their body signals, but less able to adequately attend to, tolerate, and interpret these signals. Therefore, body- and movement-oriented therapies hold promise for this group.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-02-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48734218","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}
Pub Date : 2023-01-24DOI: 10.3109/13668250.2022.2128080
A. Dew, K. Murfitt, Monica Wellington, C. Gaskin
ABSTRACT Background Internships may be a successful pathway for increasing employment rates among people with intellectual disability. This paper presents a summative evaluation of a brief film internship program for people with intellectual disability. Method At the commencement and conclusion of the internship, semi-structured interviews were conducted with eight interns and 10 mentors. The interview material was analysed thematically. Results Five themes described the experiences of interns: enhancing intern skill development and recognising gaps, building intern confidence, providing interns with assistance, meeting interns’ expectations of the program, and working towards ongoing employment. Four themes were present in the discussions with mentors: drawing on previous experience with people with disability and mentoring roles, feeling confident in a mentor role, providing mentors with support, and reflecting on interns’ future job prospects. Conclusion Although the program developed interns’ skills and confidence, an expanded program appears needed to generate open employment outcomes.
{"title":"The Back to Back Theatre film internship program for people with intellectual disability: A summative evaluation","authors":"A. Dew, K. Murfitt, Monica Wellington, C. Gaskin","doi":"10.3109/13668250.2022.2128080","DOIUrl":"https://doi.org/10.3109/13668250.2022.2128080","url":null,"abstract":"ABSTRACT Background Internships may be a successful pathway for increasing employment rates among people with intellectual disability. This paper presents a summative evaluation of a brief film internship program for people with intellectual disability. Method At the commencement and conclusion of the internship, semi-structured interviews were conducted with eight interns and 10 mentors. The interview material was analysed thematically. Results Five themes described the experiences of interns: enhancing intern skill development and recognising gaps, building intern confidence, providing interns with assistance, meeting interns’ expectations of the program, and working towards ongoing employment. Four themes were present in the discussions with mentors: drawing on previous experience with people with disability and mentoring roles, feeling confident in a mentor role, providing mentors with support, and reflecting on interns’ future job prospects. Conclusion Although the program developed interns’ skills and confidence, an expanded program appears needed to generate open employment outcomes.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44157286","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}
Pub Date : 2023-01-01Epub Date: 2022-06-30DOI: 10.3109/13668250.2022.2086110
Lauren D Smith, Anne Valentine, Tiffany A Moore Simas, Susan L Parish, Alanna Levy, Monika Mitra
Background: Research suggests that women with intellectual and developmental disabilities are at increased risk for adverse pregnancy outcomes. Further, they report unmet perinatal care needs. This qualitative study examined clinician perspectives on barriers to providing perinatal care to women with intellectual and developmental disabilities.
Method: We conducted semi-structured interviews and one focus group with US obstetric care clinicians (n=17). We used a content analysis approach to code data and analyse them for larger themes and relationships.
Results: The majority of participants were white, non-Hispanic, and female. Participants reported barriers providing care to pregnant women with intellectual and developmental disabilities across individual (e.g., communication challenges), practice (e.g., identification of disability status), and system levels (e.g., lack of clinician training).
Conclusions: Clinician training and evidence-based guidelines for perinatal care of women with intellectual and developmental disabilities as well as services and supports during pregnancy are needed.
{"title":"Clinician-reported barriers to providing perinatal care to women with intellectual and developmental disabilities.","authors":"Lauren D Smith, Anne Valentine, Tiffany A Moore Simas, Susan L Parish, Alanna Levy, Monika Mitra","doi":"10.3109/13668250.2022.2086110","DOIUrl":"10.3109/13668250.2022.2086110","url":null,"abstract":"<p><strong>Background: </strong>Research suggests that women with intellectual and developmental disabilities are at increased risk for adverse pregnancy outcomes. Further, they report unmet perinatal care needs. This qualitative study examined clinician perspectives on barriers to providing perinatal care to women with intellectual and developmental disabilities.</p><p><strong>Method: </strong>We conducted semi-structured interviews and one focus group with US obstetric care clinicians (n=17). We used a content analysis approach to code data and analyse them for larger themes and relationships.</p><p><strong>Results: </strong>The majority of participants were white, non-Hispanic, and female. Participants reported barriers providing care to pregnant women with intellectual and developmental disabilities across individual (e.g., communication challenges), practice (e.g., identification of disability status), and system levels (e.g., lack of clinician training).</p><p><strong>Conclusions: </strong>Clinician training and evidence-based guidelines for perinatal care of women with intellectual and developmental disabilities as well as services and supports during pregnancy are needed.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10036077/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9199481","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}
Pub Date : 2022-12-11DOI: 10.3109/13668250.2022.2149066
R. de Groot, H. Kaal, Wouter Ph. Stol
ABSTRACT Background This study reports the findings from a Dutch study, exploring care workers’ challenges and approaches in guiding young people with intellectual disabilities in their online lives. Method Using an inductive research design 33 semi-structured interviews were conducted with care workers. Results Care workers report challenges that revolve around three themes: (1) the perceived intangibility of the online lives of clients and (2) Risk perception: feeling stuck between control and freedom. (3) Differences in guiding approach between care workers. Based on these results a conceptual model is presented that aims to show the connection between these challenges and guiding approaches. Conclusion Perceptional processes may influence care workers’ guiding approaches. This raises important questions about the implications of these guiding approaches on the level of support clients with intellectual disabilities receive and the effectuation of their rights and liberties under the 2006 United Nations (UN) Convention on the Rights of Persons with Disabilities.
{"title":"Giving guidance in the online lives of young people with intellectual disabilities: Challenges and guiding approaches in the daily practice of Dutch care staff","authors":"R. de Groot, H. Kaal, Wouter Ph. Stol","doi":"10.3109/13668250.2022.2149066","DOIUrl":"https://doi.org/10.3109/13668250.2022.2149066","url":null,"abstract":"ABSTRACT Background This study reports the findings from a Dutch study, exploring care workers’ challenges and approaches in guiding young people with intellectual disabilities in their online lives. Method Using an inductive research design 33 semi-structured interviews were conducted with care workers. Results Care workers report challenges that revolve around three themes: (1) the perceived intangibility of the online lives of clients and (2) Risk perception: feeling stuck between control and freedom. (3) Differences in guiding approach between care workers. Based on these results a conceptual model is presented that aims to show the connection between these challenges and guiding approaches. Conclusion Perceptional processes may influence care workers’ guiding approaches. This raises important questions about the implications of these guiding approaches on the level of support clients with intellectual disabilities receive and the effectuation of their rights and liberties under the 2006 United Nations (UN) Convention on the Rights of Persons with Disabilities.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42906570","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}
Pub Date : 2022-12-07DOI: 10.3109/13668250.2022.2147053
S. Nijs, M. Zijlmans, C. Schuengel, P. Embregts
ABSTRACT Background The high support needs of persons with profound intellectual and multiple disabilities hamper their possibilities for self-determination. To support their self-determination understanding of what this means for this group is necessary. Method A three-round Delphi procedure with international experts was undertaken to operationalise self-determination for persons with profound intellectual and multiple disabilities. The quantitative output of Likert scales guided us in finding consensus or differences in the qualitative data. First round qualitative data were analysed thematically. Results The analysis revealed four topics: (1) statements regarding the characteristics of the person with profound intellectual and multiple disabilities, (2) statements regarding characteristics of the social environment, (3) statements regarding the concept of self-determination, and (4) statements regarding the definition and operationalisation of concepts. Conclusion Consensus was found on the assumption that persons with profound intellectual and multiple disabilities can live a self-determined life and on the importance of the interplay between persons with profound intellectual and multiple disabilities and the environment in order to experience self-determination.
{"title":"Operationalisation of self-determination of persons with profound intellectual and multiple disabilities: A Delphi study","authors":"S. Nijs, M. Zijlmans, C. Schuengel, P. Embregts","doi":"10.3109/13668250.2022.2147053","DOIUrl":"https://doi.org/10.3109/13668250.2022.2147053","url":null,"abstract":"ABSTRACT Background The high support needs of persons with profound intellectual and multiple disabilities hamper their possibilities for self-determination. To support their self-determination understanding of what this means for this group is necessary. Method A three-round Delphi procedure with international experts was undertaken to operationalise self-determination for persons with profound intellectual and multiple disabilities. The quantitative output of Likert scales guided us in finding consensus or differences in the qualitative data. First round qualitative data were analysed thematically. Results The analysis revealed four topics: (1) statements regarding the characteristics of the person with profound intellectual and multiple disabilities, (2) statements regarding characteristics of the social environment, (3) statements regarding the concept of self-determination, and (4) statements regarding the definition and operationalisation of concepts. Conclusion Consensus was found on the assumption that persons with profound intellectual and multiple disabilities can live a self-determined life and on the importance of the interplay between persons with profound intellectual and multiple disabilities and the environment in order to experience self-determination.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-12-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46020338","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}
Pub Date : 2022-11-16DOI: 10.3109/13668250.2022.2137749
Euwon Joh, K. Shin, Kawon Kim, J. Kim, Sojung Kim
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.
{"title":"Sexual behaviours of individuals with developmental disabilities in South Korea: A qualitative study exploring the views and experiences of professionals","authors":"Euwon Joh, K. Shin, Kawon Kim, J. Kim, Sojung Kim","doi":"10.3109/13668250.2022.2137749","DOIUrl":"https://doi.org/10.3109/13668250.2022.2137749","url":null,"abstract":"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":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-11-16","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}
Pub Date : 2022-11-08DOI: 10.3109/13668250.2022.2135174
M. D. den Boer, M. A. C. Voermans, P. Embregts
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.
{"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. D. den Boer, M. A. C. Voermans, P. Embregts","doi":"10.3109/13668250.2022.2135174","DOIUrl":"https://doi.org/10.3109/13668250.2022.2135174","url":null,"abstract":"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":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","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":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-11-02DOI: 10.3109/13668250.2022.2132630
L. B. Bennett Murphy, Jane Thornton, E. Thornton
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.
背景:prad - willi综合征(PWS)患儿的兄弟姐妹可能存在较高的心理适应不良风险(Mazaheri, M. M.， Rae-Seebach, R. D.， Preston, H. E.， Schmidt, M.， Kountz-Edwards, S.， Field, N.， Cassidy, S.， Packman, Wet al.， 2013)。Prader-Willi综合征对家庭生活质量和照顾的影响，以及未受影响的兄弟姐妹的心理社会适应。智障研究，57(9)，861-873。;O 'Neill, L. P.和Murray, L. E.(2016)。不同发育障碍诊断个体的成年兄弟姐妹的焦虑和抑郁症状。发育障碍研究，51,116-125。)． 目前的研究描述了非残疾兄弟姐妹的心理困扰和创伤后应激障碍(PTSD)的症状。方法对58名兄弟姐妹和86名家长进行调查。结果父母报告近40%的兄弟姐妹有超过临床分值的心理症状;58.9%的兄弟姐妹报告的PTSD症状超过了诊断临界值。症状与父母报告的家庭组织和控制显著相关，与兄弟姐妹报告的负面影响显著相关。结论与患有PWS的兄弟姐妹一起成长可能会挑战非残疾兄弟姐妹的适应资源，使他们容易受到心理困扰。那些照顾患有PWS儿童的人处于一个独特的地位，可以教育家庭了解非残疾兄弟姐妹的潜在脆弱性。我们鼓励对受影响的家庭成员，特别是兄弟姐妹进行常规筛查和支持。
{"title":"Psychological adjustment of siblings of children with Prader-Willi syndrome","authors":"L. B. Bennett Murphy, Jane Thornton, E. Thornton","doi":"10.3109/13668250.2022.2132630","DOIUrl":"https://doi.org/10.3109/13668250.2022.2132630","url":null,"abstract":"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":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-11-02","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}
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