Dataset Information

Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study.

ABSTRACT: Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7 to 17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads (N= 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.

SUBMITTER: Cho E

PROVIDER: S-EPMC8561991 | biostudies-literature | 2021

REPOSITORIES: biostudies-literature

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Publications

Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study.

Cho Eunji E Gilmer Mary Jo MJ Friedman Debra L DL Hendricks-Ferguson Verna L VL Hinds Pamela S PS Akard Terrah Foster TF

Progress in palliative care 20210329 5

Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clin ...[more]

PMID: 34737490

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Project description:There is concern over the increase in the number of "vaccine-hesitant" parents, which contributes to under-vaccinated populations and reduced herd immunity. Traditional studies investigating parental immunization beliefs and practices have relied on random digit dialing (RDD); however, this method presents increasing limitations. Facebook is the most used social media platform in Canada and presents an opportunity to recruit vaccine-hesitant parents in a novel manner.The study aimed to explore the use of Facebook as a tool to reach vaccine-hesitant parents, as compared with RDD methods.We recruited Canadian parents over 4 weeks in 2013-14 via targeted Facebook advertisements linked to a Web-based survey. We compared methodological parameters, key parental demographics, and three vaccine hesitancy indicators to an RDD sample of Canadian parents. Two raters categorized respondent reasons for difficulties in deciding to vaccinate, according to the model of determinants of vaccine hesitancy developed by the World Health Organization's Strategic Advisory Group of Experts on Immunization.The Facebook campaign received a total of 4792 clicks from unique users, of whom 1696 started the Web-based survey. The total response rate of fully completed unique Web-based surveys was 22.89% (1097/4792) and the survey completion rate was 64.68% (1097/1696). The total cost including incentives was reasonable (Can $4861.19). The Web-based sample yielded younger parents, with 85.69% (940/1097) under the age of 40 years as compared with 23.38% (408/1745) in the RDD sample; 91.43% (1003/1097) of the Facebook respondents were female as compared with 59.26% (1034/1745) in the RDD sample. Facebook respondents had a lower median age of their youngest child (1 year vs 8 years for RDD). When compared with the RDD sample, the Web-based sample yielded a significantly higher proportion of respondents reporting vaccines as moderately safe to not safe (26.62% [292/1097] vs 18.57% [324/1745]), partially or not at all up-to-date vaccination status of youngest child (22.06% [242/1097] vs 9.57% [167/1745]), and difficulty in making the decision to vaccinate their youngest child (21.06% [231/1097] vs 10.09% [176/1745]). Out of the Web-based respondents who reported reasons for the difficulties in deciding to vaccinate, 37.2% (83/223) reported lack of knowledge or trust due to conflicting information and 23.8% (53/223) reported the perception of the risk of the adverse effects of vaccines being higher than the risk of disease acquisition.We successfully recruited a large sample of our target population at low cost and achieved a high survey completion rate using Facebook. When compared with the RDD sampling strategy, we reached more vaccine-hesitant parents and younger parents with younger children-a population more likely to be making decisions on childhood immunizations. Facebook is a promising economical modality for reaching vaccine-hesitant parents for studies on the determinants of vaccine uptake.

Project description:Study objectivesThe objective of this study was to describe the feasibility, acceptability, and preliminary efficacy of a novel Sleep Intervention for Kids and Parents (SKIP). Parent and child primary sleep outcomes were total sleep time, wake after sleep onset (WASO), sleep efficiency (SE), and bedtime range.MethodsChildren 6-11 years of age with asthma and 1 parent, both with behavioral sleep disturbance, enrolled in this single-group pilot. The 8-week shared management intervention included weekly online educational modules, goal setting, and progress reporting. Feasibility was measured by the number of dyads who were eligible, enrolled, and retained. Acceptability was measured by survey and semistructured interview. Total sleep time, WASO, SE, and bedtime range were measured by actigraphy at baseline, after the intervention, and 12-week follow-up. Mixed-effects regression models were used to determine change in sleep outcomes from baseline.ResultsThirty-three of 39 eligible dyads enrolled; of 29 dyads that started the intervention, 25 (86%) completed all study visits. SKIP was acceptable for 61% of children and 92% of parents. Compared with baseline, at follow-up, children had significantly improved WASO (-37 minutes; 95% confidence interval [CI], -44.5 to -29.7; P < .001), SE (5.4%; 95% CI, 4.2-6.5; P < .001), and bedtime range (-35.2 minutes; 95% CI, -42.9 to -27.5; P < .001). Parents also had significantly improved WASO (-13.9 minutes; 95% CI, -19.5 to -8.2; P < .001), SE (2.7%; 95% CI, 1.7-.7; P < .001), and bedtime range (-35.3 minutes; 95% CI, -51.0 to -19.7; P < .001).ConclusionsSKIP was feasible, acceptable, and we observed improved child and parent sleep outcomes except total sleep time. Following refinements, further testing of SKIP in a controlled clinical trial is warranted. Clinical Trial Registration: Registry: ClinicalTrials.gov; Name: Sleep Intervention for Kids and Parents: A Self-Management Pilot Study; URL: https://www.clinicaltrials.gov/ct2/show/study/NCT03144531; Identifier: NCT03144531.

Project description:BackgroundOngoing efforts worldwide to provide patients with patient-accessible electronic health records (PAEHRs) have led to variability in adolescent and parental access across providers, regions, and countries. There is no compilation of evidence to guide policy decisions in matters such as access age and the extent of parent proxy access. In this paper, we outline our scoping review of different stakeholders' (including but not limited to end users) views, use, and experiences pertaining to web-based access to electronic health records (EHRs) by children, adolescents, and parents.ObjectiveThe aim of this study was to identify, categorize, and summarize knowledge about different stakeholders' (eg, children and adolescents, parents, health care professionals [HCPs], policy makers, and designers of patient portals or PAEHRs) views, use, and experiences of EHR access for children, adolescents, and parents.MethodsA scoping review was conducted according to the Arksey and O'Malley framework. A literature search identified eligible papers that focused on EHR access for children, adolescents, and parents that were published between 2007 and 2021. A number of databases were used to search for literature (PubMed, CINAHL, and PsycINFO).ResultsThe approach resulted in 4817 identified articles and 74 (1.54%) included articles. The papers were predominantly viewpoints based in the United States, and the number of studies on parents was larger than that on adolescents and HCPs combined. First, adolescents and parents without access anticipated low literacy and confidentiality issues; however, adolescents and parents who had accessed their records did not report such concerns. Second, the main issue for HCPs was maintaining adolescent confidentiality. This remained an issue after using PAEHRs for parents, HCPs, and other stakeholders but was not an experienced issue for adolescents. Third, the viewpoints of other stakeholders provided a number of suggestions to mitigate issues. Finally, education is needed for adolescents, parents, and HCPs.ConclusionsThere is limited research on pediatric PAEHRs, particularly outside the United States, and on adolescents' experiences with web-based access to their records. These findings could inform the design and implementation of future regulations regarding access to PAEHRs. Further examination is warranted on the experiences of adolescents, parents, and HCPs to improve usability and utility, inform universal principles reducing the current arbitrariness in the child's age for own and parental access to EHRs among providers worldwide, and ensure that portals are equipped to safely and appropriately manage a wide variety of patient circumstances.International registered report identifier (irrid)RR2-10.2196/36158.

Dataset Information

Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study.

Publications

Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study.

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