Browsing by Subject "caregivers"
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Item Open Access Exploring Communication Ability in Individuals With Angelman Syndrome: Findings From Qualitative Interviews With Caregivers.(American journal on intellectual and developmental disabilities, 2023-05) Zigler, Christina K; Lucas, Nicole; McFatrich, Molly; Gordon, Kelly L; Jones, Harrison N; Berent, Allyson; Panagoulias, Jennifer; Evans, Paula; Reeve, Bryce BCommunication deficits have a substantial impact on quality of life for individuals with Angelman syndrome (AS) and their families, but limited qualitative work exists to support the necessary content of measures aiming to assess communication for these individuals. Following best practices for concept elicitation studies, we conducted individual qualitative interviews with caregivers and clinicians to elicit meaningful aspects of communication for individuals with AS. Caregivers were able to discuss their child's specific communication behaviors within a large number of expressive, receptive, and pragmatic functions via numerous symbolic and non-symbolic modalities. These results aligned well with published literature on communication in AS and will be used to inform the design of a novel caregiver-reported measure. Future studies on communication in individuals with AS should focus on gathering quantitative data from large samples of diverse caregivers, which would allow for estimations of the frequency of specific behaviors across the population.Item Open Access Identifying Family and Unpaid Caregivers in Electronic Health Records: Descriptive Analysis.(JMIR formative research, 2022-07) Ma, Jessica E; Grubber, Janet; Coffman, Cynthia J; Wang, Virginia; Hastings, S Nicole; Allen, Kelli D; Shepherd-Banigan, Megan; Decosimo, Kasey; Dadolf, Joshua; Sullivan, Caitlin; Sperber, Nina R; Van Houtven, Courtney HBackground
Most efforts to identify caregivers for research use passive approaches such as self-nomination. We describe an approach in which electronic health records (EHRs) can help identify, recruit, and increase diverse representations of family and other unpaid caregivers.Objective
Few health systems have implemented systematic processes for identifying caregivers. This study aimed to develop and evaluate an EHR-driven process for identifying veterans likely to have unpaid caregivers in a caregiver survey study. We additionally examined whether there were EHR-derived veteran characteristics associated with veterans having unpaid caregivers.Methods
We selected EHR home- and community-based referrals suggestive of veterans' need for supportive care from friends or family. We identified veterans with these referrals across the 8 US Department of Veteran Affairs medical centers enrolled in our study. Phone calls to a subset of these veterans confirmed whether they had a caregiver, specifically an unpaid caregiver. We calculated the screening contact rate for unpaid caregivers of veterans using attempted phone screening and for those who completed phone screening. The veteran characteristics from the EHR were compared across referral and screening groups using descriptive statistics, and logistic regression was used to compare the likelihood of having an unpaid caregiver among veterans who completed phone screening.Results
During the study period, our EHR-driven process identified 12,212 veterans with home- and community-based referrals; 2134 (17.47%) veteran households were called for phone screening. Among the 2134 veterans called, 1367 (64.06%) answered the call, and 813 (38.1%) veterans had a caregiver based on self-report of the veteran, their caregiver, or another person in the household. The unpaid caregiver identification rate was 38.1% and 59.5% among those with an attempted phone screening and completed phone screening, respectively. Veterans had increased odds of having an unpaid caregiver if they were married (adjusted odds ratio [OR] 2.69, 95% CI 1.68-4.34), had respite care (adjusted OR 2.17, 95% CI 1.41-3.41), or had adult day health care (adjusted OR 3.69, 95% CI 1.60-10.00). Veterans with a dementia diagnosis (adjusted OR 1.37, 95% CI 1.00-1.89) or veteran-directed care referral (adjusted OR 1.95, 95% CI 0.97-4.20) were also suggestive of an association with having an unpaid caregiver.Conclusions
The EHR-driven process to identify veterans likely to have unpaid caregivers is systematic and resource intensive. Approximately 60% (813/1367) of veterans who were successfully screened had unpaid caregivers. In the absence of discrete fields in the EHR, our EHR-driven process can be used to identify unpaid caregivers; however, incorporating caregiver identification fields into the EHR would support a more efficient and systematic identification of caregivers.Trial registration
ClincalTrials.gov NCT03474380; https://clinicaltrials.gov/ct2/show/NCT03474380.Item Open Access Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome.(American journal on intellectual and developmental disabilities, 2023-05) Zigler, Christina K; Lin, Li; McFatrich, Molly; Lucas, Nicole; Gordon, Kelly L; Jones, Harrison N; Berent, Allyson; Panagoulias, Jennifer; Evans, Paula; Reeve, Bryce BThere is a critical need for high-quality clinical outcome assessments to capture the important aspects of communication ability of individuals with Angelman syndrome (AS). To center the perspective of caregivers, our team developed the novel Observer-Reported Communication Ability (ORCA) measure using best practice guidelines, with the goal of developing a measure that could be administered to caregivers directly without the need for a certified administrator for use in clinical trials. To refine the draft measure, we conducted two rounds of cognitive interviews with 24 caregivers and a quantitative study including 249 caregivers. The results from both studies support the overall content validity, construct validity, and the reliability of the ORCA measure for individuals with AS > 2 years old for use in research contexts. Future work should explore the responsiveness of ORCA measures to changes over time in a diverse sample.