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Original Paper
Type 1 Diabetes eHealth Psychoeducation: Youth Recruitment, Participation, and Satisfaction
Robin Whittemore1, PhD, RN, FAAN; Sarah S Jaser2, PhD; Melissa S Faulkner3, DSN, RN, FAAN; Kathryn Murphy4, PhD, RN; Alan Delamater5, PhD; Margaret Grey1, DrPH, RN, FAAN; TEENCOPE Research Group1
1Yale, School of Nursing, New Haven, CT, United States
2Vanderbilt University, Department of Pediatrics, Nashville, TN, United States
3University of Arizona, Tucson, AZ, United States
4The Children's Hospital of Philadelphia, Diabetes Center for Children, Philadelphia, PA, United States
5University of Miami, Miami, FL, United States
Robin Whittemore, PhD, RN, FAAN
Yale
School of Nursing
100 Church Street South
P.O. Box 9740
New Haven, CT, 06536-0740
United States
Phone: 1 203 737 2351
Fax: 1 203 737 4480
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ABSTRACT
Background: The Internet and other eHealth technologies offer a platform for improving the dissemination and accessibility of psychoeducational programs for youth with chronic illness. However, little is known about the recruitment process and yield of diverse samples in Internet research with youth who have a chronic illness.Objective: The purpose of this study was to compare the demographic and clinical characteristics of youth with Type 1 diabetes on recruitment, participation, and satisfaction with 2 eHealth psychoeducational programs.
Methods: Youth with Type 1 diabetes from 4 sites in the United States were invited to participate (N=510) with 320 eligible youth consenting (mean age=12.3, SD 1.1; 55.3% female; 65.2% white; and mean A1C=8.3, SD 1.5). Data for this secondary analysis included demographic information (age, race/ethnicity, and income), depressive symptoms, and recruitment rates, including those who refused at point of contact (22.0%), passive refusers who consented but did not participate (15.3%), and those who enrolled (62.7%). Participation (80% lessons completed) and a satisfaction survey (ie, how helpful, enjoyable) were also analyzed. Chi-square or analysis of variance (ANOVA) analyses were used.
Results: There were significant differences in recruitment rates by income and race/ethnicity such that black, Hispanic, or mixed race/ethnicity and low-income youth were more likely to refuse passively compared to white and higher-income youth who were more likely to enroll (P<.001). Participation in program sessions was high, with 78.1% of youth completing at least 4 of 5 sessions. There were no significant differences in participation by program, age, gender, or race/ethnicity. Low-income youth were less likely to participate (P=.002). Satisfaction in both programs was also high (3.9 of 5). There were significant gender, race/ethnicity, and income differences, in that girls (P=.001), black, Hispanic, or mixed race/ethnicity youth (P=.02), and low-income youth (P=.02) reported higher satisfaction. There were no differences in satisfaction by program or age.
Conclusions: Results indicate that black, Hispanic, or mixed race/ethnicity youth and low-income youth with Type 1 diabetes are less likely to enroll in Internet-based research than white and higher-income youth; thus, creative recruitment approaches are needed. Low-income youth were less likely to participate, possibly due to access. However, once enrolled, youth of diverse race/ethnicity and low-income youth with Type 1 diabetes were as highly satisfied with the eHealth programs as white youth and those with higher income. Results suggest that eHealth programs have the potential to reach diverse youth and be appealing to them.
(J Med Internet Res 2013;15(1):e15)
doi:10.2196/jmir.2170
KEYWORDS
Internet; patient participation rates; patient satisfaction; research subject recruitment youth
Type 1 diabetes is a common chronic illness in adolescents, affecting 1 in 400 youths [1]. The racial/ethnicity distribution of Type 1 diabetes affects primarily white youth in the United States. In a series of studies, the SEARCH for Diabetes in Youth research group reported that the prevalence of Type 1 diabetes in youths is approximately 70% white, 22% Hispanic, and 8% black [2-4]. Management of Type 1 diabetes is complex, requiring frequent monitoring of blood glucose levels, symptoms, and carbohydrate intake. Daily insulin treatment (3-4 injections/day or infusion from a pump) as well as meal-to-meal adjustment of insulin dose depending on diet and activity patterns is required [5]. As youth transition to adolescence and take on greater responsibility for their Type 1 diabetes management and decision making, adherence to diabetes tasks often deteriorates [6], resulting in family conflict, psychological distress, and poor metabolic control [7,8].
Psychoeducational programs for youths and family-based programs have shown to be effective in improving psychosocial and diabetes-related outcomes [9-11]. Psychoeducational programs provide education, behavioral skills, and psychosocial support for young people and their families to learn how to optimally manage a chronic illness. However, disseminating and translating research-based programs into clinical care has been challenging because of provider and family time constraints, as well as cost [12].
The Internet and other eHealth technologies offer a platform for improving the dissemination and accessibility of psychoeducational programs for youth with Type 1 diabetes. Access to the Internet is increasingly available nationwide, with 94% of youth online regularly [13]. Approximately 90% of young people of all demographic and socioeconomic categories have access to the Internet [13]. Thus, eHealth interventions have the potential to reach a diverse group of youths. Programs provided on the Internet can include psychoeducational content, interactive learning, immediate feedback, and social networking [14,15].
Psychoeducational programs delivered via computer-based Internet access have demonstrated efficacy in youths with various chronic illnesses, leading to improved knowledge, symptoms, health outcomes, and quality of life [14,15]. With respect to youths with Type 1 diabetes, an eHealth self-management program with a focus on problem solving and social networking demonstrated improved self-management and problem solving in youth who completed the program compared to a control group [16]. An Internet coping skills training program, developed by our research team, did not demonstrate differential improvements in metabolic control and diabetes-related outcomes compared to an Internet diabetes education program, but youths in both groups reported significantly increased self-care autonomy, higher diabetes self-efficacy, and improved overall quality of life over time [17]. The Internet, therefore, represents a potentially efficient and effective delivery platform for psychoeducational programs for youths with Type 1 diabetes and other chronic illnesses. When evaluated, high satisfaction with eHealth programs have also been reported [18].
Despite the numerous benefits of eHealth programs for youths with chronic illnesses, concerns have been raised about the ?digital divide? and Internet access for youths of diverse race and ethnicity and those living in low-income families. Although the vast majority of youths are online, access is higher in white youths and those who live in high-income families [13]. White youths and youths in high-income families are more likely to have online access at home (96%) and go online more frequently compared with black youths (92%), Hispanic youths (87%), and youths from low-income families (86%) [13]. A positive relationship between socioeconomic status and computer-based Internet use has been demonstrated in diverse middle school students [19] and a diverse pediatric clinic population [20].
Challenges of recruiting youths of diverse race and ethnicities for research are well established [21,22]. Issues about the perceived value of research, access to research for families of all strata of society, and cumbersome informed consent procedures have been documented [22]. However, little is known about the recruitment process and yield of diverse samples in Internet research with youths who have a chronic illness.
In addition to concerns regarding access to eHealth research, participation in eHealth programs has varied considerably across studies [14]. For example, in an eHealth program for youth with asthma, participants did not complete self-monitoring on 60% of study days [23]. In an eHealth program for depression, only 30% of youths completed 50% or more of the program modules [24]. In the eHealth problem-solving program for youth with Type 1 diabetes, the mean number of modules completed was 5.22 (of 8), with only 63% of youths completing all modules [18]. Participation in eHealth programs for youths typically decreases over the course of the study [23,25] and higher participation has been associated with more positive outcomes. For example, school-aged youths who had greater participation in an eHealth obesity prevention program demonstrated improved outcomes compared to youths with less participation [26]. A structured environment (ie, school vs home) may improve youth participation in eHealth programs. Youths who participated in a school-based eHealth program for depression had almost a 10-fold higher completion rate for modules and program exercises compared to youths who participated in the same program delivered as open access online [27].
Factors associated with eHealth program participation have begun to be identified. Girls have demonstrated greater participation compared to boys [18,27]. Increased depressive symptoms may also influence participation, although this effect may vary depending on the characteristics of the program, severity of symptoms, and the type of chronic illness. For example, in one study evaluating an eHealth program for depression treatment, less participation was reported in youths with higher depressive symptoms at baseline [24]. In contrast, in another study evaluating an eHealth depression prevention program, the authors reported that youth with higher depressive symptoms had greater participation in the program [28].
In summary, recruitment, participation, and satisfaction with eHealth programs have the potential to influence eHealth program outcomes and generalizability of results. Yet, little research has been undertaken to systematically evaluate the recruitment, participation, and satisfaction of eHealth programs. Therefore, the purpose of this study was to compare the demographic and clinical characteristics of youth with Type 1 diabetes on recruitment, participation, and satisfaction with 2 eHealth psychoeducational programs. Specifically, recruitment, participation, and satisfaction were compared by age, gender, race/ethnicity, household income, metabolic control, and depressive symptoms.
The current study is a secondary analysis of data from a clinical trial evaluating the effect of an Internet coping skills training program (TEENCOPE) compared to an Internet diabetes health education program (Managing Diabetes) for youth with Type 1 diabetes. Each program consisted of 5 sessions with content tailored to adolescents with Type 1 diabetes. TEENCOPE used a cast of ethnically diverse characters (youth with Type 1 diabetes) and a graphic novel format to model common problematic social situations (ie, parent conflict) and different coping skills to solve the problems (Figures 1 and 2). Managing Diabetes used visuals and a highly interactive interface that allowed adolescents to actively problem-solve diabetes self-management situations (Figure 3 and 4) [29].
A convenience sample was recruited from 4 university-affiliated clinical sites that included Children?s Hospital of Pennsylvania, Philadelphia, PA; University of Arizona, Tucson, AZ; University of Miami, Miami, FL; and Yale University, New Haven, CT. Inclusion criteria were: youth diagnosed with Type 1 diabetes for at least 6 months, aged 11 to 14 years, with no other significant medical problem, school grade appropriate to age within 1 year, able to speak and write English, and access to high-speed Internet at home, school, community, or clinic.
Source: http://www.jmir.org/2013/1/e15/
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