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Mothering from the Inside Out: Adapting an evidence-based intervention for high-risk mothers in the Western Cape of South Africa / Nancy SUCHMAN in Development and Psychopathology, 32-1 (February 2020)
[article]
Titre : Mothering from the Inside Out: Adapting an evidence-based intervention for high-risk mothers in the Western Cape of South Africa Type de document : Texte imprimé et/ou numérique Auteurs : Nancy SUCHMAN, Auteur ; Astrid BERG, Auteur ; Lameze ABRAHAMS, Auteur ; Toni ABRAHAMS, Auteur ; Amy ADAMS, Auteur ; Brenda COWLEY, Auteur ; Cindy DECOSTE, Auteur ; Waseem HAWA, Auteur ; Anusha LACHMAN, Auteur ; Bulelwa MPINDA, Auteur ; Nasera CADER-MOKOA, Auteur ; Nosisana NAMA, Auteur ; Juane VOGES, Auteur Article en page(s) : p.105-122 Langues : Anglais (eng) Mots-clés : community-based participatory research implementation research maternal addiction maternal mental illness parent intervention Index. décimale : PER Périodiques Résumé : During South Africa's first two decades as a democracy, the Western Cape Province has undergone radical changes to its healthcare system in an effort to address the extensive socioeconomic inequities that remain in the aftermath of the apartheid era. Although progress has been made, there is a clear need for interventions that support parents and children receiving health services in the public sector who are vulnerable to multiple psychosocial risks associated with extreme poverty. In this mixed-method study, we examined the feasibility and acceptability of adapting an evidence-based parenting intervention called Mothering from the Inside Out that was developed for mothers who are vulnerable to similar risks in the United States. Using qualitative methods, we documented the collaborative process that was guided by principles of community-based participatory research and examined themes in the Western Cape collaborators' perspectives about the feasibility and acceptability of the intervention. Using quantitative methods, we tested the preliminary efficacy of the adapted version of Mothering from the Inside Out for improving maternal reflective functioning and mother-child interactions. Although findings from both study components indicated preliminary promise, a number of obstacles and challenges at multiple levels underscore the need for (a) flexibility and contextual support for intervention research conducted in under-resourced communities, (b) clinical sensitivity to the unique experiences of parents rearing children in highly stressful, under-resourced environments, and (c) equal partnerships that allow the expertise of local providers to inform the design proposals of consulting investigators. En ligne : http://dx.doi.org/10.1017/s0954579418001451 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=415
in Development and Psychopathology > 32-1 (February 2020) . - p.105-122[article] Mothering from the Inside Out: Adapting an evidence-based intervention for high-risk mothers in the Western Cape of South Africa [Texte imprimé et/ou numérique] / Nancy SUCHMAN, Auteur ; Astrid BERG, Auteur ; Lameze ABRAHAMS, Auteur ; Toni ABRAHAMS, Auteur ; Amy ADAMS, Auteur ; Brenda COWLEY, Auteur ; Cindy DECOSTE, Auteur ; Waseem HAWA, Auteur ; Anusha LACHMAN, Auteur ; Bulelwa MPINDA, Auteur ; Nasera CADER-MOKOA, Auteur ; Nosisana NAMA, Auteur ; Juane VOGES, Auteur . - p.105-122.
Langues : Anglais (eng)
in Development and Psychopathology > 32-1 (February 2020) . - p.105-122
Mots-clés : community-based participatory research implementation research maternal addiction maternal mental illness parent intervention Index. décimale : PER Périodiques Résumé : During South Africa's first two decades as a democracy, the Western Cape Province has undergone radical changes to its healthcare system in an effort to address the extensive socioeconomic inequities that remain in the aftermath of the apartheid era. Although progress has been made, there is a clear need for interventions that support parents and children receiving health services in the public sector who are vulnerable to multiple psychosocial risks associated with extreme poverty. In this mixed-method study, we examined the feasibility and acceptability of adapting an evidence-based parenting intervention called Mothering from the Inside Out that was developed for mothers who are vulnerable to similar risks in the United States. Using qualitative methods, we documented the collaborative process that was guided by principles of community-based participatory research and examined themes in the Western Cape collaborators' perspectives about the feasibility and acceptability of the intervention. Using quantitative methods, we tested the preliminary efficacy of the adapted version of Mothering from the Inside Out for improving maternal reflective functioning and mother-child interactions. Although findings from both study components indicated preliminary promise, a number of obstacles and challenges at multiple levels underscore the need for (a) flexibility and contextual support for intervention research conducted in under-resourced communities, (b) clinical sensitivity to the unique experiences of parents rearing children in highly stressful, under-resourced environments, and (c) equal partnerships that allow the expertise of local providers to inform the design proposals of consulting investigators. En ligne : http://dx.doi.org/10.1017/s0954579418001451 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=415 INSAR Special Interest Group Report: Stakeholder Perspectives on Priorities for Future Research on Autism, Sexuality, and Intimate Relationships / Jeroen DEWINTER in Autism Research, 13-8 (August 2020)
[article]
Titre : INSAR Special Interest Group Report: Stakeholder Perspectives on Priorities for Future Research on Autism, Sexuality, and Intimate Relationships Type de document : Texte imprimé et/ou numérique Auteurs : Jeroen DEWINTER, Auteur ; Anna I. R. VAN DER MIESEN, Auteur ; Laura Graham HOLMES, Auteur Article en page(s) : p.1248-1257 Langues : Anglais (eng) Mots-clés : autism community-based participatory research education gender identity health quality of life sexuality Index. décimale : PER Périodiques Résumé : The number of empirical studies on sexuality and intimate relationships in autistic people has grown over the last years with the increasing awareness that sexuality and intimate relationships are an important part of life and well-being for autistic people. Further, expression and enjoyment of sexuality is a fundamental, basic human right. This paper reports on needs for future research in this area based on the input of autistic adults, researchers, and other stakeholders (e.g., parents and professionals). Utilizing the nominal group technique, 65 individuals participated in eight groups in which they brainstormed on research questions they deemed most important. Responses were categorized into themes and ranked according to importance based on the level of priority attributed by participants. Findings suggest that future research should focus on developing ways to support sexual and relationship well-being and getting a better understanding of sexuality and relationships in autistic people. Also, attention was drawn to the need for studying the influence of stereotypical societal views, and stigma. Finally, the importance of participatory research to include perspectives of autistic people in research and practice was stressed. LAY SUMMARY: Sexuality and romantic relationships are part of daily life for most people, including autistic people. For this study, groups of autistic people, professionals, and autism researchers discussed which research on autism, sexuality, and relationships is needed and can help autistic adolescents and adults. The group discussions revealed that more research is needed on how to support well-being relating to romantic relationships and sexuality in autistic people and how the people around them can contribute to this. Therefore, we also need to learn more about how autistic people of all ages and throughout their lives experience sexuality and relationships. Finally, the need for attention to the role of stereotypical ideas and stigma about autism, sexuality, and relationships was pointed out. Attention to the experiences of autistic people can help professionals, researchers, and policy makers to offer and organize attuned support and do relevant research. Autism Res 2020, 13: 1248-1257. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC. En ligne : http://dx.doi.org/10.1002/aur.2340 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430
in Autism Research > 13-8 (August 2020) . - p.1248-1257[article] INSAR Special Interest Group Report: Stakeholder Perspectives on Priorities for Future Research on Autism, Sexuality, and Intimate Relationships [Texte imprimé et/ou numérique] / Jeroen DEWINTER, Auteur ; Anna I. R. VAN DER MIESEN, Auteur ; Laura Graham HOLMES, Auteur . - p.1248-1257.
Langues : Anglais (eng)
in Autism Research > 13-8 (August 2020) . - p.1248-1257
Mots-clés : autism community-based participatory research education gender identity health quality of life sexuality Index. décimale : PER Périodiques Résumé : The number of empirical studies on sexuality and intimate relationships in autistic people has grown over the last years with the increasing awareness that sexuality and intimate relationships are an important part of life and well-being for autistic people. Further, expression and enjoyment of sexuality is a fundamental, basic human right. This paper reports on needs for future research in this area based on the input of autistic adults, researchers, and other stakeholders (e.g., parents and professionals). Utilizing the nominal group technique, 65 individuals participated in eight groups in which they brainstormed on research questions they deemed most important. Responses were categorized into themes and ranked according to importance based on the level of priority attributed by participants. Findings suggest that future research should focus on developing ways to support sexual and relationship well-being and getting a better understanding of sexuality and relationships in autistic people. Also, attention was drawn to the need for studying the influence of stereotypical societal views, and stigma. Finally, the importance of participatory research to include perspectives of autistic people in research and practice was stressed. LAY SUMMARY: Sexuality and romantic relationships are part of daily life for most people, including autistic people. For this study, groups of autistic people, professionals, and autism researchers discussed which research on autism, sexuality, and relationships is needed and can help autistic adolescents and adults. The group discussions revealed that more research is needed on how to support well-being relating to romantic relationships and sexuality in autistic people and how the people around them can contribute to this. Therefore, we also need to learn more about how autistic people of all ages and throughout their lives experience sexuality and relationships. Finally, the need for attention to the role of stereotypical ideas and stigma about autism, sexuality, and relationships was pointed out. Attention to the experiences of autistic people can help professionals, researchers, and policy makers to offer and organize attuned support and do relevant research. Autism Res 2020, 13: 1248-1257. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC. En ligne : http://dx.doi.org/10.1002/aur.2340 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430 Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale / Christina NICOLAIDIS in Autism, 25-3 (April 2021)
[article]
Titre : Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale Type de document : Texte imprimé et/ou numérique Auteurs : Christina NICOLAIDIS, Auteur ; Gavin SCHNIDER, Auteur ; Junghee LEE, Auteur ; Dora M. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; Lisa A. CROEN, Auteur ; Anna URBANOWICZ, Auteur ; Joelle MASLAK, Auteur Article en page(s) : p.767-773 Langues : Anglais (eng) Mots-clés : accommodations adult autism community-based participatory research healthcare providers Index. décimale : PER Périodiques Résumé : The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers' confidence (or "self-efficacy") in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers' training needs most effectively. En ligne : http://dx.doi.org/10.1177/1362361320949734 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444
in Autism > 25-3 (April 2021) . - p.767-773[article] Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale [Texte imprimé et/ou numérique] / Christina NICOLAIDIS, Auteur ; Gavin SCHNIDER, Auteur ; Junghee LEE, Auteur ; Dora M. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; Lisa A. CROEN, Auteur ; Anna URBANOWICZ, Auteur ; Joelle MASLAK, Auteur . - p.767-773.
Langues : Anglais (eng)
in Autism > 25-3 (April 2021) . - p.767-773
Mots-clés : accommodations adult autism community-based participatory research healthcare providers Index. décimale : PER Périodiques Résumé : The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers' confidence (or "self-efficacy") in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers' training needs most effectively. En ligne : http://dx.doi.org/10.1177/1362361320949734 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults / Christina NICOLAIDIS in Autism, 25-3 (April 2021)
[article]
Titre : Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Christina NICOLAIDIS, Auteur ; Kelly Y ZHEN, Auteur ; Junghee LEE, Auteur ; Dora M. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; Lisa A. CROEN, Auteur ; Anna URBANOWICZ, Auteur ; Joelle MASLAK, Auteur ; Mirah SCHARER, Auteur Article en page(s) : p.786-799 Langues : Anglais (eng) Mots-clés : adults autism community-based participatory research healthcare patient-reported outcome measures psychometrics Index. décimale : PER Périodiques Résumé : Interventions to improve healthcare for autistic adults are greatly needed. To evaluate such interventions, researchers often use surveys to collect data from autistic adults (or sometimes, their supporters), but few survey measures have been tested for use with autistic adults. Our objective was to create and test a set of patient- or proxy-reported survey measures for use in studies that evaluate healthcare interventions. We used a community-based participatory research (CBPR) approach, in partnership with autistic adults, healthcare providers, and supporters. We worked together to create or adapt survey measures. Three survey measures focus on things that interventions may try to change directly: (1) how prepared patients are for visits; (2) how confident they feel in managing their health and healthcare; and (3) how well the healthcare system is making the accommodations patients feel they need. The other measures focus on the outcomes that interventions may hope to achieve: (4) improved patient-provider communication; (5) reduced barriers to care; and (6) reduced unmet healthcare needs. We then tested these measures in a survey of 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (with 194 participating directly and 50 participating via a proxy reporter). Community partners made sure items were easy to understand and captured what was important about the underlying idea. We found the survey measures worked well in this sample. These measures may help researchers evaluate new healthcare interventions. Future research needs to assess whether interventions improve healthcare outcomes in autistic adults. En ligne : http://dx.doi.org/10.1177/1362361320967178 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444
in Autism > 25-3 (April 2021) . - p.786-799[article] Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults [Texte imprimé et/ou numérique] / Christina NICOLAIDIS, Auteur ; Kelly Y ZHEN, Auteur ; Junghee LEE, Auteur ; Dora M. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; Lisa A. CROEN, Auteur ; Anna URBANOWICZ, Auteur ; Joelle MASLAK, Auteur ; Mirah SCHARER, Auteur . - p.786-799.
Langues : Anglais (eng)
in Autism > 25-3 (April 2021) . - p.786-799
Mots-clés : adults autism community-based participatory research healthcare patient-reported outcome measures psychometrics Index. décimale : PER Périodiques Résumé : Interventions to improve healthcare for autistic adults are greatly needed. To evaluate such interventions, researchers often use surveys to collect data from autistic adults (or sometimes, their supporters), but few survey measures have been tested for use with autistic adults. Our objective was to create and test a set of patient- or proxy-reported survey measures for use in studies that evaluate healthcare interventions. We used a community-based participatory research (CBPR) approach, in partnership with autistic adults, healthcare providers, and supporters. We worked together to create or adapt survey measures. Three survey measures focus on things that interventions may try to change directly: (1) how prepared patients are for visits; (2) how confident they feel in managing their health and healthcare; and (3) how well the healthcare system is making the accommodations patients feel they need. The other measures focus on the outcomes that interventions may hope to achieve: (4) improved patient-provider communication; (5) reduced barriers to care; and (6) reduced unmet healthcare needs. We then tested these measures in a survey of 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (with 194 participating directly and 50 participating via a proxy reporter). Community partners made sure items were easy to understand and captured what was important about the underlying idea. We found the survey measures worked well in this sample. These measures may help researchers evaluate new healthcare interventions. Future research needs to assess whether interventions improve healthcare outcomes in autistic adults. En ligne : http://dx.doi.org/10.1177/1362361320967178 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum / Christina NICOLAIDIS in Autism, 19-7 (October 2015)
[article]
Titre : “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum Type de document : Texte imprimé et/ou numérique Auteurs : Christina NICOLAIDIS, Auteur ; Dora M. RAYMAKER, Auteur ; Elesia ASHKENAZY, Auteur ; Katherine E. MCDONALD, Auteur ; Sebastian DERN, Auteur ; Amelia E. V. BAGGS, Auteur ; Steven K. KAPP, Auteur ; Michael WEINER, Auteur ; W. Cody BOISCLAIR, Auteur Année de publication : 2015 Article en page(s) : p.824-831 Langues : Anglais (eng) Mots-clés : adults autism spectrum disorders community-based participatory research health services qualitative research Index. décimale : PER Périodiques Résumé : Our objective was to obtain an in-depth understanding of autistic adults’ experiences with healthcare and their recommendations for improving care. Our academic–community partnership used a community-based participatory research approach to conduct semi-structured, open-ended interviews with 39 autistic adults and 16 people who had experience supporting autistic adults in healthcare settings. Participants identified patient-level, autism-related factors that impact healthcare interactions, including verbal communication skills, sensory sensitivities, challenges with body awareness, slow processing speed, atypical non-verbal communication, and challenges with organization. However, the success of healthcare interactions largely depended on the interplay between patient- and provider-level factors, as well as the larger context in which patients were receiving care. Provider-level factors included providers’ knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow written communication, use of accessible language, openness to providing other accommodations, and skill in appropriately incorporating supporters. System-level factors included the availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism. Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination. En ligne : http://dx.doi.org/10.1177/1362361315576221 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269
in Autism > 19-7 (October 2015) . - p.824-831[article] “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum [Texte imprimé et/ou numérique] / Christina NICOLAIDIS, Auteur ; Dora M. RAYMAKER, Auteur ; Elesia ASHKENAZY, Auteur ; Katherine E. MCDONALD, Auteur ; Sebastian DERN, Auteur ; Amelia E. V. BAGGS, Auteur ; Steven K. KAPP, Auteur ; Michael WEINER, Auteur ; W. Cody BOISCLAIR, Auteur . - 2015 . - p.824-831.
Langues : Anglais (eng)
in Autism > 19-7 (October 2015) . - p.824-831
Mots-clés : adults autism spectrum disorders community-based participatory research health services qualitative research Index. décimale : PER Périodiques Résumé : Our objective was to obtain an in-depth understanding of autistic adults’ experiences with healthcare and their recommendations for improving care. Our academic–community partnership used a community-based participatory research approach to conduct semi-structured, open-ended interviews with 39 autistic adults and 16 people who had experience supporting autistic adults in healthcare settings. Participants identified patient-level, autism-related factors that impact healthcare interactions, including verbal communication skills, sensory sensitivities, challenges with body awareness, slow processing speed, atypical non-verbal communication, and challenges with organization. However, the success of healthcare interactions largely depended on the interplay between patient- and provider-level factors, as well as the larger context in which patients were receiving care. Provider-level factors included providers’ knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow written communication, use of accessible language, openness to providing other accommodations, and skill in appropriately incorporating supporters. System-level factors included the availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism. Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination. En ligne : http://dx.doi.org/10.1177/1362361315576221 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269 'Something needs to change': Mental health experiences of young autistic adults in England / L. CRANE in Autism, 23-2 (February 2019)
PermalinkServices for children with autism spectrum disorder in three, large urban school districts: Perspectives of parents and educators / Suzannah IADAROLA in Autism, 19-6 (August 2015)
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