BackgroundElectronic patient-reported outcomes (e-PROs) may provide valid and feasible options for obtaining family input on their child’s functioning for care planning and outcome monitoring, but they have not been adopted into early intervention (EI). The purpose of this pilot study was to evaluate the feasibility of implementing technology-based functional assessment into EI practice and to examine child, family, service, and environmental correlates of caregiver-reported child functioning in the home.MethodsIn a cross-sectional design, eight individual EI providers participated in a 90-min technology-based functional assessment training to recruit participants and a 60-min semi-structured focus group post data collection. Participants completed the Young Children’s Participation and Environment Measure (YC-PEM) home section online and Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) via iPad. Participants’ EI service use data were obtained from administrative records.ResultsA total of 37 caregivers of children between 6 and 35 months old (mean age = 19.4, SD = 7.7) enrolled, a rate of 44% (37/84) in 2.5 months. Providers suggested expanding staff training, gathering data during scheduled evaluations, and providing caregivers and providers with access to assessment summaries. Caregivers wanted their child’s participation to change in 56% of home activities. Lower caregiver education and higher EI intensity were related to less child involvement in home activities.ConclusionsImplementing technology-based functional assessment is feasible with modifications, and these data can be useful for highlighting child, family, and EI service correlates of caregiver-reported child functioning that merit further study. Feasibility results informed protocol modifications related to EI provider training, timing of data collection, and management of EI service use data extraction, as preparation for a subsequent scale-up study that is underway.
BackgroundSignificant racial and ethnic health care disparities experienced by Hispanic children with special health care needs (CSHCN) create barriers to enacting culturally competent rehabilitation services. One way to minimize the impact of disparities in rehabilitation is to equip practitioners with culturally relevant functional assessments to accurately determine service needs. Current approaches to culturally adapting assessments have three major limitations: use of inconsistent translation processes; current processes assess for some, but not all, elements of cultural equivalence; and limited evidence to guide decision making about whether to undertake cultural adaptation with and without language translation. The aims of this observational study are (a) to examine similarities and differences of culturally adapting a pediatric functional assessment with and without language translation, and (b) to examine the feasibility of cultural adaptation processes.MethodsThe Young Children’s Participation and Environment Measure (YC-PEM), a pediatric functional assessment, underwent cultural adaptation (i.e., language translation and cognitive testing) to establish Spanish and English pilot versions for use by caregivers of young CSHCN of Mexican descent. Following language translation to develop a Spanish YC-PEM pilot version, 7 caregivers (4 Spanish-speaking; 3 English-speaking) completed cognitive testing to inform decisions regarding content revisions to English and Spanish YC-PEM versions. Participant responses were content coded to established cultural equivalencies. Coded data were summed to draw comparisons on the number of revisions needed to achieve cultural equivalence between the two versions. Feasibility was assessed according to process data and data quality.ResultsResults suggest more revisions are required to achieve cultural equivalence for the translated (Spanish) version of the YC-PEM. However, issues around how the participation outcome is conceptualized were identified in both versions. Feasibility results indicate that language translation processes require high resource investment, but may increase translation quality. However, use of questionnaires versus interview methods for cognitive testing may have limited data saturation.ConclusionsResults lend preliminary support to the need for and feasibility of cultural adaptation with and without language translation. Results inform decisions surrounding cultural adaptations with and without language translation and thereby enhance cultural competence and quality assessment of healthcare need within pediatric rehabilitation.
during which participants with aphasia co-constructed and shared a story about their life over 6 sessions with a speech-language pathologist/researcher. This story was shared during a seventh session to a small invited audience. On the day following the story sharing, semistructured qualitative interviews were conducted with each of the participants. Interpretative Phenomenological Analysis was used to explore the personal experience of persons with aphasia in co-constructing a personal narrative about their life with stroke and aphasia in the 'My Story' Project. Setting: The study took place in a university clinical setting. Results may be of interest to rehabilitation practitioners working in inpatient rehabilitation units, outpatient facilities, specialized aphasia rehabilitation centers, and home and community based settings.
Date Presented 3/30/2017 Racial and ethnic health care disparities indicate gaps in cultural competence. Cultural adaptations of assessments afford the opportunity to reduce disparities and enact culturally competent assessment. Study results contribute new knowledge about cultural adaptations with and without translation. Primary Author and Speaker: Kristen Arestad Contributing Authors: Erin Albrecht, Lauren Nale, Pat Sample, David MacPhee, Chun Yi Lim, Mary Khetani
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