Community-Based Participatory Research to Adapt Health Measures for Use by People With Developmental Disabilities

Nicolaidis, Christina; Raymaker, Dora; Katz, Marsha; Oschwald, Mary; Goe, Rebecca; Leotti, Sandra M.; Grantham, Leah; Plourde, Eddie; Salomon, Janice; Hughes, Rosemary B.; Powers, Laurie E.

doi:10.1353/cpr.2015.0040

Cited by 8 publications

(18 citation statements)

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“…Data on the psychometric properties of our adapted scales are available elsewhere. 17,[20][21][22][23][24][25]33 Overall, the adapted and new scales demonstrated promising psychometric characteristics, although further research needs to confirm their validity in other samples.…”

Section: Processes For Survey Adaptation or Creationmentioning

confidence: 90%

“…Preliminary psychometric testing of our adapted instruments is very promising, with good internal consistency reliability, test-retest reliability, content validity, structural validity, convergent validity, and responsiveness to change. 17,[20][21][22][23][24][25]33 While participatory research with autistic adults was rare to nonexistent when we first started AASPIRE, 31,32 we are very excited by the rapid increase in the use of participatory methods with autistic adults. Several other research teams have worked with autistic adults to create, adapt, or augment survey instruments.…”

Section: Discussionmentioning

confidence: 99%

“…The Partnering with People with Developmental Disabilities to Address Violence Consortium was formed to conduct a single Centers for Disease Control-funded survey about violence and health in people with developmental disabilities in Oregon and Montana (the ''Partnering Project''). [23][24][25][26] Both partnerships use a CBPR approach 14 wherein academic and community partners collaborate throughout all phases of the research and share equally in the decision-making process. 16 Both teams include academic researchers, autistic adults, family members, and disability and health services providers (with some partners serving in multiple roles).…”

Section: Institutional Contextmentioning

confidence: 99%

“…More information on the CBPR aspects of both partnerships is available elsewhere. 15,16,25,[27][28][29][30]…”

Section: Institutional Contextmentioning

confidence: 99%

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Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

Nicolaidis

Raymaker

McDonald

et al. 2020

Autism in Adulthood

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Despite growing appreciation of the need for research on autism in adulthood, few survey instruments have been validated for use with autistic adults. We conducted an institutional ethnography of two related partnerships that used participatory approaches to conduct research in collaboration with autistic people and people with intellectual disability. In this article, we focus on lessons learned from adapting survey instruments for use in six separate studies. Community partners identified several common problems that made original instruments inaccessible. Examples included: (1) the use of difficult vocabulary, confusing terms, or figures of speech; (2) complex sentence structure, confusing grammar, or incomplete phrases; (3) imprecise response options; (4) variation in item response based on different contexts; (5) anxiety related to not being able to answer with full accuracy; (6) lack of items to fully capture the autism-specific aspects of a construct; and (7) ableist language or concepts. Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct. We caution against using instruments developed for other populations unless instruments are carefully tested with autistic adults, and we describe one possible approach to ensure that instruments are accessible to a wide range of autistic participants.

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Section: Processes For Survey Adaptation or Creationmentioning

confidence: 90%

Section: Discussionmentioning

confidence: 99%

Section: Institutional Contextmentioning

confidence: 99%

“…More information on the CBPR aspects of both partnerships is available elsewhere. 15,16,25,[27][28][29][30]…”

Section: Institutional Contextmentioning

confidence: 99%

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Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

Nicolaidis

Raymaker

McDonald

et al. 2020

Autism in Adulthood

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“…On the other hand, additional considerations including include defining what/who constitute the autistic community, where it is located that is, virtually or in situ should be made to benefit the development of CBPR, the ASC communities it serves and how to convey their position and opinions via culturally-accepted interpersonal means (Jivraj et al, 2014; Nicolaidis et al, 2013; 2015b). Furthermore, it remains unclear how the implementation of CBPR research can be translated from healthcare settings into the context of employment and autism (Nicolaidis et al, 2015a; Wright et al, 2014).…”

Section: Methodsmentioning

confidence: 99%

Enhancing Resilience in Autistic Adults Using Community-based Participatory Research: A Novel HRD Intervention in Employment Service Provision

Farkas

Mendy

Kargas

2020

Advances in Developing Human Resources

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The Problem Although previous research suggests current human resource management (HRM) policies and procedures do not fully accommodate the diverse strengths and needs of jobseekers and employees on the autism spectrum, the human resource development (HRD) community, including its scholars, researchers and practitioners will benefit from learning more about autism and how people with the condition can develop resilience capacity at work. The Solutions Utilizing a community-based participatory research approach (CBPR), we recommend an Autism Work Peer Support Group (AWPSG) program as a new framework that can help the HRD community as well as HRM work coaches and disability employment advisors to foster environments, where people’s social adaptation is key for their resilience capacity development. The Stakeholders The current research provides a framework on how a CBPR approach could be utilized to operationalize the design and evaluation of an employment intervention (i.e., AWPSG) that could involve autistic jobseekers in the process of resilience building. Furthermore, our findings indicate that fostering the emergence of a subjectively meaningful employment-focused peer support group program could help enlighten the HRD community about the challenges faced by this particular group and thereby offer effective autism-HRD advice and support to autistic jobseekers, employees and employers, management, work-coaches and disability employment advisors.

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The POMONA‐ESP project methodology: Collecting data on health indicators for people with intellectual developmental disorders

Folch

Martínez‐Leal

Vicens

et al. 2018

Research Intellect Disabil

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Community-Based Participatory Research to Adapt Health Measures for Use by People With Developmental Disabilities

Cited by 8 publications

References 0 publications

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

Enhancing Resilience in Autistic Adults Using Community-based Participatory Research: A Novel HRD Intervention in Employment Service Provision

The POMONA‐ESP project methodology: Collecting data on health indicators for people with intellectual developmental disorders

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