Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process" / Christina NICOLAIDIS in Autism, 29-8 (August 2025)  

Public ISBD [article]  inAutism > 29-8 (August 2025) . - p.1959-1972 Titre : Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process" Type de document : texte imprimé Auteurs : Christina NICOLAIDIS, Auteur ; Mirah SCHARER, Auteur ; Dora M. RAYMAKER, Auteur ; Joseph VERA, Auteur ; Todd EDWARDS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Joelle MASLAK, Auteur ; Liu-Qin YANG, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Steven K. KAPP, Auteur ; Andrea JOYCE, Auteur ; Anna WALLINGTON, Auteur ; null NULL, Auteur Article en page(s) : p.1959-1972 Langues : Anglais (eng) Mots-clés : autistic adults  Delphi method  community-based participatory research  patient-reported outcome measures Index. décimale : PER Périodiques Résumé : People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify (1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven "Delphi process" within our community-based participatory research approach in what we are calling a "CBPR-Nested Delphi Process." The process allowed us to reach a full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.Lay abstract Why was this project done?People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services.What were the goals of the project?To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys.What did the researchers do?We used a method called a "Delphi process" that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers.What does this study add?The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, with their caregivers).What are the implications?Researchers and service providers should consider targeting services to these outcomes. They should evaluate the effectiveness of services using surveys that have been created with and for autistic adults. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251322082 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564 [article] Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process" [texte imprimé] / Christina NICOLAIDIS, Auteur ; Mirah SCHARER, Auteur ; Dora M. RAYMAKER, Auteur ; Joseph VERA, Auteur ; Todd EDWARDS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Joelle MASLAK, Auteur ; Liu-Qin YANG, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Steven K. KAPP, Auteur ; Andrea JOYCE, Auteur ; Anna WALLINGTON, Auteur ; null NULL, Auteur . - p.1959-1972. Langues : Anglais (eng) in Autism > 29-8 (August 2025) . - p.1959-1972 Mots-clés : autistic adults  Delphi method  community-based participatory research  patient-reported outcome measures Index. décimale : PER Périodiques Résumé : People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify (1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven "Delphi process" within our community-based participatory research approach in what we are calling a "CBPR-Nested Delphi Process." The process allowed us to reach a full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.Lay abstract Why was this project done?People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services.What were the goals of the project?To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys.What did the researchers do?We used a method called a "Delphi process" that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers.What does this study add?The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, with their caregivers).What are the implications?Researchers and service providers should consider targeting services to these outcomes. They should evaluate the effectiveness of services using surveys that have been created with and for autistic adults. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251322082 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564

Influences on suicidality and suicide-prevention needs for the autistic community: Qualitative insights from multiple perspectives / Anne V. KIRBY in Autism, 30-1 (January 2026)  

Public ISBD [article]  inAutism > 30-1 (January 2026) . - p.61-73 Titre : Influences on suicidality and suicide-prevention needs for the autistic community: Qualitative insights from multiple perspectives Type de document : texte imprimé Auteurs : Anne V. KIRBY, Auteur ; Kristina FELDMAN, Auteur ; Wilhelm CLARK, Auteur ; Amber N. DARLINGTON, Auteur ; Alissa ATISME, Auteur ; Bobbi DUNCAN-ISHCOMER, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Andrea JOYCE, Auteur ; Whitney LEE, Auteur ; Kayla RODRIGUEZ, Auteur ; Zack SIDDEEK, Auteur ; Kavitha MURTHI, Auteur ; Brooks KEESHIN, Auteur ; Hilary COON, Auteur ; Christina NICOLAIDIS, Auteur Article en page(s) : p.61-73 Langues : Anglais (eng) Mots-clés : autism  community-engagement  qualitative  suicidal ideation  suicide prevention Index. décimale : PER Périodiques Résumé : Autistic individuals are disproportionately likely to experience suicidal thoughts, feelings, and actions. Addressing suicidality is also a high priority of autistic community members. The goal of this study was to understand broad influences on suicidality and suicide-prevention needs for the autistic community. Using a community-based participatory research approach, we conducted a reflective thematic analysis of qualitative interviews with 16 autistic adults, 8 family members, and 14 mental health providers. Themes summarizing influences on suicidality and suicide-prevention needs centered on three broad thematic concepts: (1) Pervasive negative societal attitudes and social experiences have a lasting impact on autistic people’s feelings of worth; (2) negative experiences and stressors add strain, making life feel overwhelming and hopeless; and (3) difficulty regulating and managing emotions can increase the likelihood of suicidal feelings and actions. Participants provided autism-specific recommendations to incorporate into suicide prevention. The findings emphasize the need for multifaceted suicide-prevention efforts supporting autistic people through improved societal treatment, community-level supports, and individually tailored services.Lay Abstract Autistic people experience suicidal thoughts, feelings, and actions more often than non-autistic people. Autistic community members say this is an important research topic. The goal of this study was to understand broadly what kinds of things might lead autistic people to feel suicidal. We also wanted to know what is needed for suicide prevention for the autistic community. The research team for this study included autistic community partners using an approach called community-based participatory research. The study team did interviews with 16 autistic adults, 8 family members, and 14 mental health providers. The results show that different types of experiences can lead to suicidality. One influence is the negative treatment of autistic people. Negative experiences, challenges, and stressors can also make life feel overwhelming for autistic people. Finally, difficult emotions can be hard to manage. There are many things that participants thought would help autistic people feel less suicidal. The study shows that autistic people need to be treated better and need more community supports to help prevent suicidal feelings. They need individualized services to help manage their emotions. En ligne : https://dx.doi.org/10.1177/13623613251368019 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=578 [article] Influences on suicidality and suicide-prevention needs for the autistic community: Qualitative insights from multiple perspectives [texte imprimé] / Anne V. KIRBY, Auteur ; Kristina FELDMAN, Auteur ; Wilhelm CLARK, Auteur ; Amber N. DARLINGTON, Auteur ; Alissa ATISME, Auteur ; Bobbi DUNCAN-ISHCOMER, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Andrea JOYCE, Auteur ; Whitney LEE, Auteur ; Kayla RODRIGUEZ, Auteur ; Zack SIDDEEK, Auteur ; Kavitha MURTHI, Auteur ; Brooks KEESHIN, Auteur ; Hilary COON, Auteur ; Christina NICOLAIDIS, Auteur . - p.61-73. Langues : Anglais (eng) in Autism > 30-1 (January 2026) . - p.61-73 Mots-clés : autism  community-engagement  qualitative  suicidal ideation  suicide prevention Index. décimale : PER Périodiques Résumé : Autistic individuals are disproportionately likely to experience suicidal thoughts, feelings, and actions. Addressing suicidality is also a high priority of autistic community members. The goal of this study was to understand broad influences on suicidality and suicide-prevention needs for the autistic community. Using a community-based participatory research approach, we conducted a reflective thematic analysis of qualitative interviews with 16 autistic adults, 8 family members, and 14 mental health providers. Themes summarizing influences on suicidality and suicide-prevention needs centered on three broad thematic concepts: (1) Pervasive negative societal attitudes and social experiences have a lasting impact on autistic people’s feelings of worth; (2) negative experiences and stressors add strain, making life feel overwhelming and hopeless; and (3) difficulty regulating and managing emotions can increase the likelihood of suicidal feelings and actions. Participants provided autism-specific recommendations to incorporate into suicide prevention. The findings emphasize the need for multifaceted suicide-prevention efforts supporting autistic people through improved societal treatment, community-level supports, and individually tailored services.Lay Abstract Autistic people experience suicidal thoughts, feelings, and actions more often than non-autistic people. Autistic community members say this is an important research topic. The goal of this study was to understand broadly what kinds of things might lead autistic people to feel suicidal. We also wanted to know what is needed for suicide prevention for the autistic community. The research team for this study included autistic community partners using an approach called community-based participatory research. The study team did interviews with 16 autistic adults, 8 family members, and 14 mental health providers. The results show that different types of experiences can lead to suicidality. One influence is the negative treatment of autistic people. Negative experiences, challenges, and stressors can also make life feel overwhelming for autistic people. Finally, difficult emotions can be hard to manage. There are many things that participants thought would help autistic people feel less suicidal. The study shows that autistic people need to be treated better and need more community supports to help prevent suicidal feelings. They need individualized services to help manage their emotions. En ligne : https://dx.doi.org/10.1177/13623613251368019 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=578

The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants / Christina NICOLAIDIS in Autism, 23-8 (November 2019)  

Public ISBD [article]  inAutism > 23-8 (November 2019) . - p.2007-2019 Titre : The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants Type de document : texte imprimé Auteurs : Christina NICOLAIDIS, Auteur ; Dora M. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; Amelia BAGGS, Auteur ; Elesia ASHKENAZY, Auteur ; Katherine MCDONALD, Auteur ; Michael WEINER, Auteur ; Joelle MASLAK, Auteur ; Morrigan HUNTER, Auteur ; Andrea JOYCE, Auteur Article en page(s) : p.2007-2019 Langues : Anglais (eng) Mots-clés : adults  autism  participatory research  qualitative research  research ethics  survey adaptation Index. décimale : PER Périodiques Résumé : As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006-2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research. En ligne : http://dx.doi.org/10.1177/1362361319830523 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407 [article] The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants [texte imprimé] / Christina NICOLAIDIS, Auteur ; Dora M. RAYMAKER, Auteur ; Steven K. KAPP, Auteur ; Amelia BAGGS, Auteur ; Elesia ASHKENAZY, Auteur ; Katherine MCDONALD, Auteur ; Michael WEINER, Auteur ; Joelle MASLAK, Auteur ; Morrigan HUNTER, Auteur ; Andrea JOYCE, Auteur . - p.2007-2019. Langues : Anglais (eng) in Autism > 23-8 (November 2019) . - p.2007-2019 Mots-clés : adults  autism  participatory research  qualitative research  research ethics  survey adaptation Index. décimale : PER Périodiques Résumé : As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006-2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research. En ligne : http://dx.doi.org/10.1177/1362361319830523 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=407

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