Pub Date : 2021-09-26DOI: 10.3109/13668250.2021.1976008
Josefina Bunster, M. Tassé, Marcela Tenorio, Andrés Aparicio, P. Arango
ABSTRACT Background Given the importance of adaptive behaviour (AB) for the identification of intellectual disability and the design of intervention plans for people with Down syndrome (DS), this cross-sectional study explored AB in infants with DS, compared to infants with typical development (TD). Method: we evaluated 60 infants (10–36 months) with ABAS-II (32 with DS, 28 with TD). Using the developmental trajectories method for data analysis, we compared AB between the two groups. Results We found significant differences between groups in most of the skills assessed, in favour of infants with TD. Three different patterns of trajectories were found for the AB and the relation between the groups: (1) no differences (Leisure and Self-Care Skills); (2) differences at the beginning of the trajectory and then a similar slope (Home Living, Self-Direction, Social and Motor Skills); and (3) a similar starting-point with differences in the trajectories (Communication, Community Use, Pre-Academic, and Health and Safety). Conclusions This empirical cross-sectional study contributes to the understanding of the development of AB in children with DS, showing both weak areas and skills that continue improving over time in these early years. Contributions and limitations of the study are discussed.
{"title":"Adaptive behaviours in children with Down syndrome: A cross-sectional study of developmental trajectories","authors":"Josefina Bunster, M. Tassé, Marcela Tenorio, Andrés Aparicio, P. Arango","doi":"10.3109/13668250.2021.1976008","DOIUrl":"https://doi.org/10.3109/13668250.2021.1976008","url":null,"abstract":"ABSTRACT Background Given the importance of adaptive behaviour (AB) for the identification of intellectual disability and the design of intervention plans for people with Down syndrome (DS), this cross-sectional study explored AB in infants with DS, compared to infants with typical development (TD). Method: we evaluated 60 infants (10–36 months) with ABAS-II (32 with DS, 28 with TD). Using the developmental trajectories method for data analysis, we compared AB between the two groups. Results We found significant differences between groups in most of the skills assessed, in favour of infants with TD. Three different patterns of trajectories were found for the AB and the relation between the groups: (1) no differences (Leisure and Self-Care Skills); (2) differences at the beginning of the trajectory and then a similar slope (Home Living, Self-Direction, Social and Motor Skills); and (3) a similar starting-point with differences in the trajectories (Communication, Community Use, Pre-Academic, and Health and Safety). Conclusions This empirical cross-sectional study contributes to the understanding of the development of AB in children with DS, showing both weak areas and skills that continue improving over time in these early years. Contributions and limitations of the study are discussed.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"47 1","pages":"276 - 286"},"PeriodicalIF":1.3,"publicationDate":"2021-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42098411","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 : 2021-09-09DOI: 10.3109/13668250.2022.2066511
Eline Wagemaker, T. Dekkers, A. Bexkens, E. Salemink, J. Zadelaar, H. Huizenga
ABSTRACT Background This preregistered study compares adolescents with mild-to-borderline intellectual disability (MBID) and typically developing (TD) adolescents on their susceptibility to peer influence. To understand why adolescents with MBID are susceptible to peer influence, links with inhibition, Theory of Mind (ToM) and negative interpretation bias are investigated. Method We assessed 163 adolescents (111 MBID, 52 TD 14–19 years; 63% boys) using experimental tasks and self- and/or teacher-reports. Results Adolescents with MBID and TD adolescents did not differ in their susceptibility to peer influence, inhibition, and negative interpretations. On two ToM instruments, adolescents with MBID performed weaker than TD adolescents. In a structural equation model, tested in the MBID group, inhibition, ToM and negative interpretation bias were not related to susceptibility to peer influence. Conclusions This study revealed new insights by strong methods such as the multimethod approach, a full theoretical model testing relations between all constructs simultaneously, and the large sample.
{"title":"Susceptibility to peer influence in adolescents with mild-to-borderline intellectual disability: Investigating links with inhibition, Theory of Mind and negative interpretation bias","authors":"Eline Wagemaker, T. Dekkers, A. Bexkens, E. Salemink, J. Zadelaar, H. Huizenga","doi":"10.3109/13668250.2022.2066511","DOIUrl":"https://doi.org/10.3109/13668250.2022.2066511","url":null,"abstract":"ABSTRACT\u0000 Background This preregistered study compares adolescents with mild-to-borderline intellectual disability (MBID) and typically developing (TD) adolescents on their susceptibility to peer influence. To understand why adolescents with MBID are susceptible to peer influence, links with inhibition, Theory of Mind (ToM) and negative interpretation bias are investigated. Method We assessed 163 adolescents (111 MBID, 52 TD 14–19 years; 63% boys) using experimental tasks and self- and/or teacher-reports. Results Adolescents with MBID and TD adolescents did not differ in their susceptibility to peer influence, inhibition, and negative interpretations. On two ToM instruments, adolescents with MBID performed weaker than TD adolescents. In a structural equation model, tested in the MBID group, inhibition, ToM and negative interpretation bias were not related to susceptibility to peer influence. Conclusions This study revealed new insights by strong methods such as the multimethod approach, a full theoretical model testing relations between all constructs simultaneously, and the large sample.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"47 1","pages":"376 - 390"},"PeriodicalIF":1.3,"publicationDate":"2021-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45438980","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 : 2021-08-31DOI: 10.3109/13668250.2021.1967897
A. Cashin, Amy Pracilio, Thomas Buckley, Michelle L. Kersten, J. Trollor, J. Morphet, V. Howie, Ken Griffin, N. Wilson
ABSTRACT Aims and Objectives To survey the educational experience of Registered Nurses in Australia, at undergraduate, post graduate and continuing professional development levels. Background It has been previously demonstrated that nurses feel unprepared to care for people with intellectually disability and/or autism spectrum disorder in mainstream clinical settings. Specific undergraduate pre-registration curricula content in this domain has been identified to be low in volume, and in the absence of any studies to determine it, it has been presumed that it has diminished over time. Methods A cross-sectional survey of Australian Registered Nurses using a descriptive survey tool. Results The level of education undertaken related to intellectual disability and autism spectrum disorder has been consistently low across time and it predates the move from pre-registration hospital based training to the tertiary sector. A relationship was identified between the experience of education and self-reported preparedness, comfort and knowledge to care for people with intellectual disability and/or autism spectrum disorder. Conclusion Increased educational preparation for nurses to care for people with intellectual disability and/or autism is indicated.
{"title":"A survey of Registered Nurses’ educational experiences and self-perceived capability to care for people with intellectual disability and/or autism spectrum disorder","authors":"A. Cashin, Amy Pracilio, Thomas Buckley, Michelle L. Kersten, J. Trollor, J. Morphet, V. Howie, Ken Griffin, N. Wilson","doi":"10.3109/13668250.2021.1967897","DOIUrl":"https://doi.org/10.3109/13668250.2021.1967897","url":null,"abstract":"ABSTRACT Aims and Objectives To survey the educational experience of Registered Nurses in Australia, at undergraduate, post graduate and continuing professional development levels. Background It has been previously demonstrated that nurses feel unprepared to care for people with intellectually disability and/or autism spectrum disorder in mainstream clinical settings. Specific undergraduate pre-registration curricula content in this domain has been identified to be low in volume, and in the absence of any studies to determine it, it has been presumed that it has diminished over time. Methods A cross-sectional survey of Australian Registered Nurses using a descriptive survey tool. Results The level of education undertaken related to intellectual disability and autism spectrum disorder has been consistently low across time and it predates the move from pre-registration hospital based training to the tertiary sector. A relationship was identified between the experience of education and self-reported preparedness, comfort and knowledge to care for people with intellectual disability and/or autism spectrum disorder. Conclusion Increased educational preparation for nurses to care for people with intellectual disability and/or autism is indicated.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"47 1","pages":"227 - 239"},"PeriodicalIF":1.3,"publicationDate":"2021-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46935425","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 : 2021-08-17DOI: 10.3109/13668250.2021.1964153
Valentina Boursier, Francesca Gioia, Federica Coppola, A. Schimmenti
ABSTRACT Parents of children with special healthcare needs search the Internet to learn about and share health-related information. Indeed, online communities (OCs) often increase knowledge and skills, decreasing feelings of isolation and distress. The current study explored the content and functioning of an Italian OC comprising parents of children with Down Syndrome. Following a netnographic method, data were analysed through the Latent Thematic Analysis. Five main themes emerged: the e-group, the child, prescriptive knowhow, being a parent, and personal experience across time. The findings illustrated the complex relationship between parents and children with Down Syndrome within the OC, exploring psychological themes recurring in parents of children with Down Syndrome. Within the e-group, special children and parental challenges can be described, sharing concerns, conflicting emotions, and experience-based information, countering Down Syndrome difficulties and social isolation. Clinicians and healthcare professionals should consider the OCs-related advantages to enhance the healthcare of parents and children with Down Syndrome.
{"title":"eHealth content-sharing and emotional support among Italian parents of children with Down Syndrome: A qualitative report","authors":"Valentina Boursier, Francesca Gioia, Federica Coppola, A. Schimmenti","doi":"10.3109/13668250.2021.1964153","DOIUrl":"https://doi.org/10.3109/13668250.2021.1964153","url":null,"abstract":"ABSTRACT Parents of children with special healthcare needs search the Internet to learn about and share health-related information. Indeed, online communities (OCs) often increase knowledge and skills, decreasing feelings of isolation and distress. The current study explored the content and functioning of an Italian OC comprising parents of children with Down Syndrome. Following a netnographic method, data were analysed through the Latent Thematic Analysis. Five main themes emerged: the e-group, the child, prescriptive knowhow, being a parent, and personal experience across time. The findings illustrated the complex relationship between parents and children with Down Syndrome within the OC, exploring psychological themes recurring in parents of children with Down Syndrome. Within the e-group, special children and parental challenges can be described, sharing concerns, conflicting emotions, and experience-based information, countering Down Syndrome difficulties and social isolation. Clinicians and healthcare professionals should consider the OCs-related advantages to enhance the healthcare of parents and children with Down Syndrome.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"47 1","pages":"240 - 251"},"PeriodicalIF":1.3,"publicationDate":"2021-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42773958","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 : 2021-08-17DOI: 10.3109/13668250.2021.1954482
Lincoln Humphreys, C. Bigby, T. Iacono, E. Bould
ABSTRACT Background Organisational culture in group homes for people with intellectual disabilities has been identified as an influence on service delivery and staff behaviour. The aim was to examine patterns of culture across group homes in disability organisations. Method The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture. Data were available from 260 staff who worked across 58 group homes managed by eight organisations. Using scatterplots and measures of dispersion, the scores on the seven GHCS subscales were examined for patterns of integrated (i.e., similarities) and differentiated (i.e., variability) culture within the organisations. Results Patterns of differentiated culture were found in six organisations for one or more GHCS subscales. Patterns of integrated culture were found in three organisations for one subscale. In two organisations, patterns of both integrated and differentiated culture were found. Conclusions The findings contribute to the conceptualisation of and research into organisational culture in group homes, with implications for changing and maintaining culture.
{"title":"Patterns of group home culture in organisations supporting people with intellectual disabilities: A cross-sectional study","authors":"Lincoln Humphreys, C. Bigby, T. Iacono, E. Bould","doi":"10.3109/13668250.2021.1954482","DOIUrl":"https://doi.org/10.3109/13668250.2021.1954482","url":null,"abstract":"ABSTRACT Background Organisational culture in group homes for people with intellectual disabilities has been identified as an influence on service delivery and staff behaviour. The aim was to examine patterns of culture across group homes in disability organisations. Method The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture. Data were available from 260 staff who worked across 58 group homes managed by eight organisations. Using scatterplots and measures of dispersion, the scores on the seven GHCS subscales were examined for patterns of integrated (i.e., similarities) and differentiated (i.e., variability) culture within the organisations. Results Patterns of differentiated culture were found in six organisations for one or more GHCS subscales. Patterns of integrated culture were found in three organisations for one subscale. In two organisations, patterns of both integrated and differentiated culture were found. Conclusions The findings contribute to the conceptualisation of and research into organisational culture in group homes, with implications for changing and maintaining culture.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"47 1","pages":"252 - 264"},"PeriodicalIF":1.3,"publicationDate":"2021-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42083817","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 : 2021-08-14DOI: 10.3109/13668250.2021.1961049
T. Araten-Bergman, C. Bigby
ABSTRACT Background Building Circles of Support is an innovative strategy for developing natural support networks. This study explored some of the ambiguity in the conceptualisations, operational elements, and perceived outcomes of Circles of Support programs. Method A comparative case study of three Australian Circles of Support programs was conducted. Data included document review and qualitative interviews with 27 key stakeholders. Qualitative analysis of the data from each program was analysed using categories of the program logic as a conceptual framework, followed by cross-case analysis to identify commonalities and differences. Results Findings show conceptual variability between programs, which shared similar overarching intents but differed in program, strategies, target population and outcomes, which were shaped by the missions of the organisation of which they were part. Conclusion Findings can inform the future design and evaluation of programs to support the development of informal support network for people with intellectual disabilities.
{"title":"Forming and supporting circles of support for people with intellectual disabilities – a comparative case analysis","authors":"T. Araten-Bergman, C. Bigby","doi":"10.3109/13668250.2021.1961049","DOIUrl":"https://doi.org/10.3109/13668250.2021.1961049","url":null,"abstract":"ABSTRACT Background Building Circles of Support is an innovative strategy for developing natural support networks. This study explored some of the ambiguity in the conceptualisations, operational elements, and perceived outcomes of Circles of Support programs. Method A comparative case study of three Australian Circles of Support programs was conducted. Data included document review and qualitative interviews with 27 key stakeholders. Qualitative analysis of the data from each program was analysed using categories of the program logic as a conceptual framework, followed by cross-case analysis to identify commonalities and differences. Results Findings show conceptual variability between programs, which shared similar overarching intents but differed in program, strategies, target population and outcomes, which were shaped by the missions of the organisation of which they were part. Conclusion Findings can inform the future design and evaluation of programs to support the development of informal support network for people with intellectual disabilities.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"47 1","pages":"177 - 189"},"PeriodicalIF":1.3,"publicationDate":"2021-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42860964","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 : 2021-08-10DOI: 10.3109/13668250.2021.1945416
Agnieszka Fusińska-Korpik, Michal Gacek
ABSTRACT Background In this study we aimed to explore how intelligence and executive functioning are related to decision-making regarding social situations in persons with mild ID. Method We studied 80 vocational school students with mild ID; the controls were 80 students of a similar age. We assessed decision-making ability with the Important Life Decisions Task. Intelligence was assessed with the Wechsler Adult Intelligence Scale – Revised (WAIS-R), and executive functioning with the Wisconsin Card Sorting Test (WCST). Results The WAIS-R Verbal Comprehension and the Memory/Freedom From Distractibility factors predicted the decision-making score. Executive functioning was not related to decision-making. There was no interaction between the group and other variables. Conclusions Verbal intellectual abilities and abilities related to short-term memory and attention play an important role in decision-making regarding social situations. The difference in performance between persons with ID and the control group should be regarded as quantitative and not qualitative.
{"title":"Decision-making in people with mild intellectual disability: Relations with intelligence and a measure of executive functioning","authors":"Agnieszka Fusińska-Korpik, Michal Gacek","doi":"10.3109/13668250.2021.1945416","DOIUrl":"https://doi.org/10.3109/13668250.2021.1945416","url":null,"abstract":"ABSTRACT Background In this study we aimed to explore how intelligence and executive functioning are related to decision-making regarding social situations in persons with mild ID. Method We studied 80 vocational school students with mild ID; the controls were 80 students of a similar age. We assessed decision-making ability with the Important Life Decisions Task. Intelligence was assessed with the Wechsler Adult Intelligence Scale – Revised (WAIS-R), and executive functioning with the Wisconsin Card Sorting Test (WCST). Results The WAIS-R Verbal Comprehension and the Memory/Freedom From Distractibility factors predicted the decision-making score. Executive functioning was not related to decision-making. There was no interaction between the group and other variables. Conclusions Verbal intellectual abilities and abilities related to short-term memory and attention play an important role in decision-making regarding social situations. The difference in performance between persons with ID and the control group should be regarded as quantitative and not qualitative.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"47 1","pages":"87 - 95"},"PeriodicalIF":1.3,"publicationDate":"2021-08-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44042378","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 : 2021-08-04DOI: 10.3109/13668250.2021.1954481
C. Bigby, J. Douglas, Elizabeth Smith, T. Carney, Shih-Ning Then, Ilan Wiesel
ABSTRACT Background Supporting participation in decision making is complex, dynamic and multifactorial. The aim of this study was to understand more about the difficulties parents of adults with intellectual disabilities experienced in providing decision support and their strategies for resolving them. Method Participants were 23 parents who regularly provided decision support for their adult with intellectual disabilities. Most of the adults (19) lived at home. Parents participated in semi-structured interviews at least three times during the study. We applied a social-constructionist theoretical perspective and a template approach for analysis. Results Findings fell into three core categories, making the right decision, factors that made decision support difficult, and strategies to manage uncertainty, which included controlling, influencing, expanding the adult’s horizons and enabling risk. Conclusions The knowledge gained will help in building the capacity of parents to provide decision support that better understands and respects the will and preferences of the person they support.
{"title":"Parental strategies that support adults with intellectual disabilities to explore decision preferences, constraints and consequences","authors":"C. Bigby, J. Douglas, Elizabeth Smith, T. Carney, Shih-Ning Then, Ilan Wiesel","doi":"10.3109/13668250.2021.1954481","DOIUrl":"https://doi.org/10.3109/13668250.2021.1954481","url":null,"abstract":"ABSTRACT Background Supporting participation in decision making is complex, dynamic and multifactorial. The aim of this study was to understand more about the difficulties parents of adults with intellectual disabilities experienced in providing decision support and their strategies for resolving them. Method Participants were 23 parents who regularly provided decision support for their adult with intellectual disabilities. Most of the adults (19) lived at home. Parents participated in semi-structured interviews at least three times during the study. We applied a social-constructionist theoretical perspective and a template approach for analysis. Results Findings fell into three core categories, making the right decision, factors that made decision support difficult, and strategies to manage uncertainty, which included controlling, influencing, expanding the adult’s horizons and enabling risk. Conclusions The knowledge gained will help in building the capacity of parents to provide decision support that better understands and respects the will and preferences of the person they support.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"47 1","pages":"165 - 176"},"PeriodicalIF":1.3,"publicationDate":"2021-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45339851","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 : 2021-07-26DOI: 10.3109/13668250.2021.1947210
P. Geuijen, Laura Vromans, P. Embregts
ABSTRACT Background The COVID-19 pandemic significantly affected families who have children with intellectual disabilities (ID). Our aim was to explore the pandemic’s impact on Dutch migrant families who have children with ID, by interviewing these families’ support workers. Method A descriptive qualitative methodology was employed, which resulted in semi-structured telephone interviews with 34 support workers. We selected interview transcripts that pertained to 27 Dutch migrant families who have children with ID and identified themes and subthemes using thematic analysis. Results Two main themes related to the pandemic emerged: (1) Work of support workers during the COVID-19 pandemic and (2) Impact of the COVID-19 pandemic upon migrant families who have children with ID. Conclusion The present study demonstrates that support workers particularly struggled to stay in touch with migrant families who have children with ID during the COVID-19 pandemic. Therefore, support workers should tailor their support to the needs of migrant families.
{"title":"A qualitative investigation of support workers’ experiences of the impact of the COVID-19 pandemic on Dutch migrant families who have children with intellectual disabilities","authors":"P. Geuijen, Laura Vromans, P. Embregts","doi":"10.3109/13668250.2021.1947210","DOIUrl":"https://doi.org/10.3109/13668250.2021.1947210","url":null,"abstract":"ABSTRACT Background The COVID-19 pandemic significantly affected families who have children with intellectual disabilities (ID). Our aim was to explore the pandemic’s impact on Dutch migrant families who have children with ID, by interviewing these families’ support workers. Method A descriptive qualitative methodology was employed, which resulted in semi-structured telephone interviews with 34 support workers. We selected interview transcripts that pertained to 27 Dutch migrant families who have children with ID and identified themes and subthemes using thematic analysis. Results Two main themes related to the pandemic emerged: (1) Work of support workers during the COVID-19 pandemic and (2) Impact of the COVID-19 pandemic upon migrant families who have children with ID. Conclusion The present study demonstrates that support workers particularly struggled to stay in touch with migrant families who have children with ID during the COVID-19 pandemic. Therefore, support workers should tailor their support to the needs of migrant families.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"46 1","pages":"300 - 305"},"PeriodicalIF":1.3,"publicationDate":"2021-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41709761","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 : 2021-06-19DOI: 10.3109/13668250.2021.1929880
D. McConnell, Rahel More, Laura Pacheco, Marjorie Aunos, Lyndsey Hahn, M. Feldman
ABSTRACT Background Parents with intellectual disability, like all other parents, are embedded in networks of capability-enhancing and/or capability-inhibiting relationships. This study investigated links between how parents with intellectual disability experienced their upbringing, continuity and discontinuity in familial relationships, and their assessments of their own parenting. Method Structured interviews, incorporating scales and open-ended questions, were conducted with 91 parents in receipt of specialist services for people with intellectual disability, including 82 mothers and 9 fathers. Results Most participants (81%) had experienced at least one form of childhood abuse or household adversity. Participants who recalled a more positive upbringing, including less adversity and more parental care, tended to have stronger support networks and reported greater parenting role satisfaction and emotional warmth in their interactions with their own children. Conclusion The results highlight the need to understand parenting by people with intellectual disability in biographical and relational context.
{"title":"Childhood experience, family support and parenting by people with intellectual disability","authors":"D. McConnell, Rahel More, Laura Pacheco, Marjorie Aunos, Lyndsey Hahn, M. Feldman","doi":"10.3109/13668250.2021.1929880","DOIUrl":"https://doi.org/10.3109/13668250.2021.1929880","url":null,"abstract":"ABSTRACT Background Parents with intellectual disability, like all other parents, are embedded in networks of capability-enhancing and/or capability-inhibiting relationships. This study investigated links between how parents with intellectual disability experienced their upbringing, continuity and discontinuity in familial relationships, and their assessments of their own parenting. Method Structured interviews, incorporating scales and open-ended questions, were conducted with 91 parents in receipt of specialist services for people with intellectual disability, including 82 mothers and 9 fathers. Results Most participants (81%) had experienced at least one form of childhood abuse or household adversity. Participants who recalled a more positive upbringing, including less adversity and more parental care, tended to have stronger support networks and reported greater parenting role satisfaction and emotional warmth in their interactions with their own children. Conclusion The results highlight the need to understand parenting by people with intellectual disability in biographical and relational context.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"47 1","pages":"152 - 164"},"PeriodicalIF":1.3,"publicationDate":"2021-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41602492","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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