A guiding process to culturally adapt assessments for participation-focused pediatric practice: the case of the Participation and Environment Measures (PEM)

Tomas, Vanessa; Srinivasan, Roopa; Kulkarni, Vrushali; Teplicky, Rachel; Anaby, Dana; Khetani, Mary

doi:10.1080/09638288.2021.1960645

Cited by 10 publications

(12 citation statements)

References 68 publications

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“…From a participatory point of view, the methodical involvement of users as researchers, experts, or think-aloud testers for the process of cultural adaptations is central. Recently published PEM guidelines ( 35 ) recommend performing various rounds of interviews and with a selected, diverse sample with a range of experience. As professionals are used for language reading and assessments, we prefer users instead of professionals for think-aloud interviews.…”

Section: Discussionmentioning

confidence: 99%

“…Therefore, equivalence, specifically conceptual equivalence, is essential because concepts such as participation and disability may differ across cultures ( 29 ). Based on experiences of translation and cultural adaptation of YC-PEM to the context of Singapore ( 30 ), Sweden ( 31 ), China ( 32 ), Dutch-speaking countries ( 33 ), and Hispanic US population ( 34 ), a guiding process to culturally adapt participation-focused pediatric practice was recently published ( 35 ). According to these authors, some of which are the developers of the YC-PEM, cross-cultural research advances the delivery of culturally responsive pediatric rehabilitation and translates knowledge on a global scale.…”

Section: Introductionmentioning

confidence: 99%

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Translation and cross-cultural adaptation of the young children participation and environment measure for its use in Austria, Germany, and Switzerland

Krieger,

Ederer,

Amann

et al. 2024

Front. Pediatr.

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BackgroundConcepts such as participation and environment may differ across cultures. Consequently, cultural equivalence must be assured when using a measure like the Young Children Participation and Environment Measure (YC-PEM) in other settings than the original English-speaking contexts. This study aimed to cross-culturally translate and adapt the YC-PEM into German as it is used in Germany, Austria, and Switzerland.MethodsFollowing international guidelines, two translations were compared, and the research and expert team made the first adaptations. Twelve caregivers of children with and without disabilities from three German-speaking countries participated in two rounds of think-aloud interviews. Data were analyzed by content analysis to look for item, semantic, operational, conceptual, and measurement equivalence to reach a cultural equivalence version in German.ResultsAdaptations were needed in all fields but prominently in item, operational, and conceptual equivalence. Operational equivalence resulted in graphical adaptations in the instructions and questions to make the German version of YC-PEM, YC-PEM (G), more user-friendly.ConclusionThis study presents a cross-cultural translation and adaptation process to develop a German version of the YC-PEM suitable for Germany, Austria, and Switzerland. A culturally adapted YC-PEM (G) is now available for research, practice, and further validation.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Translation and cross-cultural adaptation of the young children participation and environment measure for its use in Austria, Germany, and Switzerland

Krieger,

Ederer,

Amann

et al. 2024

Front. Pediatr.

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“…This was similar compared to our study findings. It seems that the term participation has a different meaning in each culture and language leading to the need of including end users (such as caregivers and occupational therapists) when adapting a measure (Tomas et al, 2022).…”

Section: Discussionmentioning

confidence: 99%

“…It might be that clinicians and researchers need to modify the self-completed administration of the YC-PEM or that it should be completed together with a therapist face-to-face to identify intervention goals and strategies. Focusing more on the operational equivalence such as readjusting the order of response options so that the flow is more understandable or adjusting the font size or repeating key instructions might be examples of important functional changes (Tomas et al, 2022). This is critical and very important as it is linked to health literacy for successful completion of the measure by a parent or caregiver in the Dutch cultural context (Nutbeam, 2008).…”

Section: Discussionmentioning

confidence: 99%

Translation, Cross-Cultural Adaptation and Pilot Testing of the Young Children’s Participation and Environment Measure (YC-PEM) in the Dutch Culture

Coussens

Bulckmans

Desoete

et al. 2023

Journal of Occupational Therapy, Schools, & Early Intervent

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Concepts such as participation and environment may differ across cultures. Consequently, to use a measure like the Young Children's Participation and Environment Measure (YC-PEM) in other than the original English-speaking contexts, cultural adaptation needs to be assured. The objective is to cross-culturally translate, adapt, and pilot test the YC-PEM into the Dutch language and culture. In total 3 cognitive interviews with caregivers and one focus group with Occupational Therapists (N = 5) working in early intervention were conducted to evaluate the cultural relevance of the YC-PEM content for use in a Dutch context. Data was analyzed by content analysis using semantic, idiomatic, content, and conceptual equivalence. The YC-PEM was pilot tested with 31 caregivers of children with and without disabilities. Setting specific estimates of internal consistency and test-retest reliability were obtained. Results show adaptations mainly focused on content and conceptual equivalence, with conceptual equivalence being the most challenging to reach. Internal consistency estimates varied from .42 to .93 for the participation scales and from .74 to .83 for the environmental scale. This study gives preliminary evidence for the use of a culturally adapted YC-PEM in Belgium and the Netherlands. Further validation in a larger sample is indicated to evaluate its psychometric properties.

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“…The need to continue expanding engagement to less socially privileged families is also consistent with prior work. 59 To ensure equitable use of the YC-PEM e-PRO, developments are underway to: (1) facilitate cultural adaptations of the tool and its related products (e.g., introductory video), with and without language translation and per best practice guidelines 59 ; (2) improve engagement of racially minoritized families to upgrade select content (e.g., centering the expertise of Black and African-American identifying families to introduce anti-racist terms within the YC-PEM e-PRO); and (3) extend its functionality by pairing it with the PEM + . PEM+ is a goal-setting application that is being automated and personalized to enhance user navigation support online for goal-setting purposes.…”

Section: Discussionmentioning

confidence: 99%

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention

et al. 2023

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Objective The aim of the study is to identify and prioritize early intervention (EI) stakeholders' perspectives of supports and barriers to implementing the Young Children's Participation and Environment Measure (YC-PEM), an electronic patient-reported outcome (e-PRO) tool, for scaling its implementation across multiple local and state EI programs. Methods An explanatory sequential (quan > QUAL) mixed-methods study was conducted with EI families (n = 6), service coordinators (n = 9), and program leadership (n = 7). Semi-structured interviews and focus groups were used to share select quantitative pragmatic trial results (e.g., percentages for perceived helpfulness of implementation strategies) and elicit stakeholder perspectives to contextualize these results. Three study staff deductively coded transcripts to constructs in the Consolidated Framework for Implementation Research (CFIR). Data within CFIR constructs were inductively analyzed to generate themes that were rated by national early childhood advisors for their relevance to longer term implementation. Results All three stakeholder groups (i.e., families, service coordinators, program leadership) identified thematic supports and barriers across multiple constructs within each of four CFIR domains: (1) Six themes for “intervention characteristics,” (2) Six themes for “process,” (3) three themes for “inner setting,” and (4) four themes for “outer setting.” For example, all stakeholder groups described the value of the YC-PEM e-PRO in forging connections and eliciting meaningful information about family priorities for efficient service plan development (“intervention characteristics”). Stakeholders prioritized reaching families with diverse linguistic preferences and user navigation needs, further tailoring its interface with automated data capture and exchange processes (“process”); and fostering a positive implementation climate (“inner setting”). Service coordinators and program leadership further articulated the value of YC-PEM e-PRO results for improving EI access (“outer setting”). Conclusion Results demonstrate the YC-PEM e-PRO is an evidence-based intervention that is viable for implementation. Optimizations to its interface are needed before undertaking hybrid type-2 and 3 multisite trials to test these implementation strategies across state and local EI programs with electronic data capture capabilities and diverse levels of organizational readiness and resources for implementation.

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A guiding process to culturally adapt assessments for participation-focused pediatric practice: the case of the Participation and Environment Measures (PEM)

Cited by 10 publications

References 68 publications

Translation and cross-cultural adaptation of the young children participation and environment measure for its use in Austria, Germany, and Switzerland

Translation and cross-cultural adaptation of the young children participation and environment measure for its use in Austria, Germany, and Switzerland

Translation, Cross-Cultural Adaptation and Pilot Testing of the Young Children’s Participation and Environment Measure (YC-PEM) in the Dutch Culture

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention

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