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BACKGROUND: Multiple research strategies are required to recruit and engage a representative cohort of young adults in diabetes research. In this report, we describe an approach for internet-based recruitment for a repeated-measures descriptive study. OBJECTIVE: The objective of this cross-sectional study was to determine whether internet-based recruitment through multiple social media platforms, a clinical research platform, and cooperation with community partnerships-College Diabetes Network and Beyond Type 1-would serve as an effective way to recruit a representative sample of young adults aged 18-25 years with type 1 diabetes (T1D). METHODS: We conducted a repeated-measures descriptive study. We captured enrollment rates and participant characteristics acquired from each social media platform through survey data and Facebook analytics. This study was advertised via paid postings across a combination of different social media platforms (eg, Facebook, Instagram, Twitter, and Reddit). We used quarterly application postings, quarterly newsletters, and participation in the ResearchMatch registry to identify potentially eligible participants from February 3, 2021, to June 6, 2022. RESULTS: ResearchMatch proved to be the most cost-effective strategy overall, yielding the highest gender and racial diversity compared to other internet platforms (eg, Facebook, Instagram, Twitter, and Reddit), application postings (eg, Beyond Type 1), and newsletters (eg, College Diabetes Network and a local area college). However, we propose that the combination of these approaches yielded a larger, more diverse sample compared to any individual strategy. Our recruitment cost was US $16.69 per eligible participant, with a 1.27% conversion rate and a 30% eligibility rate. CONCLUSIONS: Recruiting young adults with T1D across multiple internet-based platforms was an effective strategy to yield a moderately diverse sample. Leveraging various recruitment strategies is necessary to produce a representative sample of young adults with T1D. As the internet becomes a larger forum for study recruitment, participants from underrepresented backgrounds may continue engaging in research through advertisements on the internet and other internet-based recruitment platforms.
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Distance caregivers (DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer, from a distance. Unlike local caregiving research, distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies. To date, DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams. Because they are not usually present at medical appointments, DCGs do not receive first-hand information from the health care team about the patient's condition, disease progression, and/or treatment options. These caregivers report feeling left out of important family discussions. They experience anxiety related to the uncertainty of the family members' well-being and guilt related to not being available to help local caregivers more. The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer. Family-centered care, attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care. In this manuscript, the sparse literature on distance caregiving is reviewed. Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested.
RESUMEN
BACKGROUND: Surrogate decision makers of seriously ill patients are frequently asked to make healthcare decisions without evidence-based decision support. AIMS: To describe the lived experiences of surrogate decision makers who have made advance care decisions and identify relevant features of a decision support intervention from their perspectives. METHODS: A convenience sample of surrogate decision makers (n=10) of seriously ill patients discharged to an extended care facility within the past 6 months participated in focus group discussions. Data were analyzed using content analysis. RESULTS: Three salient themes were identified: (1) limited preparation, (2) decisional and emotional burden, and (3) content and features of a decision support intervention. CONCLUSIONS: Surrogate decision makers of the seriously ill are not prepared for their new role, and experience decisional and emotional burden. Effective decision support interventions must address the decisional and emotional needs of surrogate decision makers to enhance the quality of their decisions.