Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study

Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management... Background: Accessible self-management interventions are critical for adolescents with sickle cell disease to better cope with their disease, improve health outcomes and health-related quality of life, and promote successful transition to adult health care services. However, very few comprehensive self-management and transitional care programs have been developed and tested in this population. Internet and mobile phone technologies can improve accessibility and acceptability of interventions to promote disease self-management in adolescents with sickle cell disease. Objective: The aim of this study was to qualitatively explore the following from the perspectives of adolescents, parents, and their health care providers: (1) the impact of sickle cell disease on adolescents to identify challenges to their self-management and transitional care and (2) determine the essential components of a digital self-management and transitional care program as the first phase to inform its development. Methods: A qualitative descriptive design utilizing audio-recorded, semistructured interviews was used. Adolescents (n=19, aged 12-19 years) and parents (n=2) participated in individual interviews, and health care providers (n=17) participated in focus group discussions and were recruited from an urban tertiary care pediatric hospital. Audio-recorded data were transcribed verbatim and organized into categories inductively, reflecting emerging themes using simple content analysis. http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.1 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al Results: Data were categorized into 4 major themes: (1) impact of sickle cell disease, (2) experiences and challenges of self-management, (3) recommendations for self-management and transitional care, and (4) perceptions about a digital self-management program. Themes included subcategories and the perspectives of adolescents, parents, and health care providers. Adolescents discussed more issues related to self-management, whereas health care providers and parents discussed issues related to transition to adult health services. Conclusions: Adolescents, parents, and health care providers described the continued challenges youth with sickle cell disease face in terms of psychosocial impacts and stigmatization. Participants perceived a benefit to alleviating some of these challenges through a digital self-management tool. They recommended that an effective digital self-management program should provide appropriate sickle cell disease–related education; guidance on developing self-advocacy and communication skills; empower adolescents with information for planning for their future; provide options for social support; and be designed to be engaging for both adolescents and parents to use. A digital platform to deliver these elements is an accessible and acceptable way to address the self-management and transitional care needs of adolescents. (JMIR Pediatr Parent 2018;1(2):e11058) doi:10.2196/11058 KEYWORDS sickle cell; adolescent; cell phone; self-management; internet; qualitative research; needs assessment; transitional care self-management and transitional care therapies to adolescents Introduction with SCD and their families. Sickle cell disease (SCD) is an inherited red blood cell disorder Information and communication technologies offer an accessible that predominantly affects individuals of African descent. platform for the delivery of health interventions for patients and Increased prevalence is also seen in Mediterranean, Caribbean, families [12-16]. Access to Web-based health interventions South and Central American, Arab, and East Indian populations eliminates geographic constraints, allows for anonymity, and [1]. SCD is caused by a genetic mutation that results in abnormal provides 24-hour access to disease-related information and hemoglobin, which makes blood cells rigid and sickled in shape. self-management strategies that may help patients feel more in These abnormal red cells can disrupt the flow of blood in small control of managing their health problems and minimize feelings vessels, resulting in hypoxia-reperfusion injury throughout the of isolation [12,13]. Digital interventions are treatments based body and its organs, causing episodes of painful vaso-occlusive on effective face-to-face interventions (eg, CBT) that are crises and organ damage. Cerebral infarcts resulting in transformed for delivery via the internet with the goal of neurological and neurocognitive deficits are the most feared improved health outcomes. Previous efforts in developing complications [2]. Negative consequences from recurrent pain interventions for adolescents with SCD have focused on in SCD include academic underachievement related to school medication adherence, symptom tracking, and CBT for pain absenteeism, limited physical activity, symptoms of depression management [17-20]. However, many of these programs are and anxiety, and disruption of interpersonal relations [3,4]. characterized by limited involvement of adolescents and their families in their development. Despite the suffering and burden associated with SCD, minimal research has focused on promoting disease self-management To date, no digital, comprehensive self-management and among adolescents with SCD, such as teaching skills to help transitional care program has been developed and evaluated in teens to cope with symptoms and manage their chronic illness. terms of improved health outcomes (symptom reduction and Many youth with SCD leave pediatric care without adequate improved transition readiness and health-related quality of life) transition preparation and subsequently do not successfully for adolescents with SCD. Thus, the aims of this study were to transfer to adult health care services [5,6], which may put them qualitatively examine the following from the perspectives of at risk for higher morbidity and earlier mortality during early adolescents, parents, and their health care providers (HCPs): adulthood years [5-7]. Therefore, improving health-related (1) examine the impact of SCD on adolescents to identify quality of life and ensuring successful transition to adult health challenges to their self-management and transitional care and care through better disease self-management is critical [5,6,8,9]. (2) determine the key components of a digital program for SCD self-management and transitional care for adolescents. Self-management interventions such as information-based material and cognitive behavioral therapies (CBTs) for SCD Methods have shown promise in symptom reduction and improved health-related quality of life [8,10,11]. However, the vast Patient and Parent Selection majority of adolescents with chronic health conditions do not Adolescents, parents, and HCPs were purposively recruited receive comprehensive self-management (eg, CBT) education from 1 large metropolitan tertiary care pediatric center in due to lack of access to these therapies. This limited accessibility Toronto, Canada. Adolescents were eligible to participate if is a function of the direct and indirect costs associated with they were (1) 12 to 19 years old, (2) diagnosed with SCD, and therapy as well as limited availability of trained professionals, (3) able to speak and read English and at least one of their particularly in nonurban areas [8]. There is a clear need to parents was able to speak and read English. Adolescents were develop accessible and acceptable ways to deliver excluded if they had (1) severe cognitive impairments or (2) http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.2 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al major medical or psychiatric concurrent illnesses, which medical information from the adolescent’s chart. The research precluded assessment of their self-management and transitional assistant conducted the individual interviews with adolescents care needs. Parents were eligible to participate if they were able and parents. Interview questions were based on a literature to speak and read English. review, followed by pilot testing with 2 to 3 adolescents with SCD and their parents, and modified based on their feedback Health Care Provider Selection (see Textbox 1 for semistructured interview guide). Interviews HCPs were eligible to participate if they (1) had worked in began with a broad introductory question, followed by questions pediatric hematology, general pediatrics, and emergency and probes to allow participants to elaborate on their medicine for at least 1 year at the time of the study and provided experiences. Refreshments and a small honorarium were care to adolescents with SCD and (2) could speak and read provided to compensate for participant time. English. HCP participants were recruited using posters describing the Study Design study and information sessions at the pediatric center. After obtaining consent from HCPs, a mutually convenient time was A descriptive qualitative design with semistructured, audiotaped set up for the focus group interviews once 5 to 7 participants individual interviews with adolescents with SCD and parents, were enrolled. HCPs were also asked to complete a questionnaire and focus group interviews with HCPs, were undertaken to on demographics. Trained members of the research team examine the impact of SCD on adolescents; to determine moderated the focus group discussions among the HCPs. During self-management and transitional care needs of adolescents with and immediately after the focus group discussions took place, SCD; and to inform the development of a Web-enabled the interviewer detailed field notes on their impressions of self-management and transitional care intervention [21,24]. participant responses and the interviewing process. All Individual interviews were utilized to gain an appreciation of individual and focus group interviews were audio-recorded and the perspectives of the individual adolescents and their parents, transcribed verbatim. uninfluenced by the views of others. Focus group interviews were conducted with HCPs to capitalize on communication and Data Analysis shared interaction to generate data and gain insight into specific All data from individual and focus group interviews and field issues in more depth [22]. notes were analyzed inductively using simple content analysis Procedures [23]. Transcribed data were managed using NVivo computer software program (QSR International). Demographic data were The local institutional research ethics board approved the study. analyzed using descriptive statistics in Microsoft Excel and used The research assistant obtained consent, arranged an individual to summarize the characteristics of the study participants. All interview with each of the parent and adolescent participants, data were read several times by 3 investigators (JNS, CN, and and asked them to complete questionnaires on demographics YK) to obtain an overall understanding, identify data codes, and on internet use. The research assistant completed a health and ensure that all comments were carefully considered and information questionnaire to gather additional demographic and included. Textbox 1. Broad questions in semistructured interview guide. 1. Can you tell me what it has been like for you/your son or daughter/adolescents to live with sickle cell disease (SCD)? 2. What do you think is important to know and do so that you/your son or daughter/adolescents can learn or manage (or take care of) your/their SCD? 3. What do you/your son or daughter/adolescents need to know about your/their SCD? 4. What do you/your son or daughter/adolescents need to know about in terms of how to manage or treat your/their SCD? 5. What do you/your son or daughter/adolescents need to know about drugs and other treatments and how they affect you/them? 6. Can you tell me what it is like for you/your son or daughter/adolescents when you/they come to the emergency department for a sickle cell crisis? 7. Can you tell me about how SCD affects the other aspects of your/your son or daughter/adolescents’ life? 8. What is it like (for your son or daughter/adolescents) to talk about your/their SCD to your/their doctors and nurses? Family? Friends? Teachers? 9. When you/your son or daughter/adolescents turn 18, you/they will be transferred from a pediatric hospital to an adult hospital. Have you thought about this? What do you think it will be like (for them)? 10. How do you think SCD will affect you/your son or daughter/adolescents’ in the future? 11. How have you/your son or daughter/adolescents learned about your/their SCD and how to manage and treat it? 12. If you/your son or daughter/adolescents had to tell someone else about what it’s like to have SCD and how to deal with it what would you/they tell them? 13. What do you think it would be like (for your son or daughter/adolescents) to learn more about your/their SCD from a web site made just for teens and young adults with SCD and their families? 14. Is there anything else you would like to tell us about what you think is important to know and do so that you/your son or daughter/adolescents can learn to take care of your/their SCD better? http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.3 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al As data were entered into the analyses, codes continued to be challenges of managing SCD during adolescence when youth generated, until there were no new data that could not be were going through many different transitions in their lives and categorized under existing codes. Codes were combined into were trying hard to fit in among their peers. higher-level themes, and the themes were checked against coded Academic Impact extracts and the entire dataset [23,24]. Disagreements were Adolescents discussed missing many days of school, especially addressed through discussion and consensus of all investigators. with crises and appointments, resulting in missed homework, lessons, tests, and projects and catching up with missed Results schoolwork. Keeping up with missed schoolwork was also a source of stress described by adolescents, parents, and HCPs. Participant Characteristics Adolescents described how keeping up with missed schoolwork A total of 19 adolescents, 2 parents, and 17 HCPs were recruited was a source of stress that caused vaso-occlusive crises. All 3 from March 2012 to August 2012. Adolescents and parents groups noted that teachers needed education on the disease so individually participated in the semistructured interviews, and that they would not be skeptical of adolescents’ symptoms or HCPs participated in focus groups. Participant demographics, absences. medical information, and internet and computer use are summarized in Tables 1 and 2. HCP demographics information Sickle Cell Disease Is Stigmatizing is summarized in Table 3. Of the 18 adolescents who responded Adolescents described difficulties in explaining their disease to to the internet and computer use questionnaire, 94% (17/18) others and dealing with negative responses from others, which had a computer with internet access and were either was echoed by HCPs. Negative responses from peers were often “comfortable” or “very comfortable” using the internet. exacerbated by negative responses and misunderstanding of their condition among teachers. HCPs described the racial stigma Self-Management and Transitional Care Needs of SCD among HCPs in emergency departments. Other HCPs The perspectives of participants were categorized into 4 major described the disease-related stigma adolescents faced when themes: “impact of sickle cell disease,” “experiences and they sought care, often being labeled as drug-seekers. HCPs challenges of self-management of SCD,” “recommendations also described the cultural stigma perceived to exist among for self-management and transitional care,” and “perceptions some of the ethnic groups who typically inherited SCD. of digital self-management program.” Subthemes for each of the major themes are summarized below and in Textbox 2; Experience and Challenges of Self-Management additional quotations illustrating the themes and subthemes can The Internet Is a Source of Sickle Cell Disease–Related be found in Multimedia Appendix 1. Education Impact of Sickle Cell Disease Adolescents learned about SCD from HCPs, parents, and frequently from the internet. However, using the internet to Uncertainty of Sickle Cell Disease learn more did not always meet their needs in a developmentally Adolescents, parents, and HCPs all described the challenges of appropriate way. Parents used the internet as a resource and managing the uncertainty of SCD. Parents and HCPs described informed their children about the disease. They knew which the uncertainty of complications such as strokes and downstream websites were more reputable and accurate than others to get consequences associated with them such as cognitive and vision their information. impairments. Adolescents worried about the uncertainty of vaso-occlusive crises and whether any feeling of pain would Managing Emergency Department Visits escalate into a crisis and whether it would affect school or Adolescents and parents highlighted a need for further awareness activities with friends. HCPs described the emotional impact and education among emergency department staff on SCD and this had on adolescents, resulting in frustration and a feeling of its management. HCPs described the challenges adolescents loss of control over their lives. would face in attending emergency departments that were not familiar with them or SCD; this often resulted in delays in pain Impact on Developing Peer Relationships management. Adolescents and parents found that they waited Adolescents reported frequently missing out on activities with too long for pain management at certain emergency departments friends, such as swimming and playing outside, along with and thus preferred visiting hospitals where emergency school events due to appointments and crises and described departments had implemented an SCD protocol or who had feeling different from their peers. Adolescents reported that this experience managing SCD vaso-occlusive crises. affected their ability to create and maintain friendships, especially when they were younger. Adolescents and parents Self-Management Is a Joint Effort described experiences of being bullied for seeming different Adolescents believed managing their disease was primarily their from their peers; however, some adolescents and parents found responsibility along with their parents, HCPs, and sometimes that as they grew older, it became easier to make friends who friends, and adolescents described it as a joint effort between were considerate of their condition. Other adolescents preferred everyone. They knew as they grew older, self-management was not to speak with friends or teachers about their disease and ultimately their own responsibility, but their parents were still kept it to themselves. Parents and HCPs found that children involved in reminding them to take their medication, make would also forgo strategies to prevent a crisis around their appointments, bring them to appointments, knowing when to friends because they wanted to fit in. HCPs discussed the go to the hospital, and to advocate for them when needed. http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.4 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al Adolescents said that they were starting to take their own Lack of System Level Supports medication and taking preventative measures against crises. Parents described the financial challenges of managing SCD. Having supportive friends and family, communicating with They took time off from work for hospital visits and emergency friends with SCD, and taking charge of their disease were all department admissions and felt worried when they had to go to strategies in their self-management. Parents said that they were work while their child was still in the hospital. HCPs discussed still mostly managing their teen’s disease but that they were the lack of dedicated financial and practical supports for SCD trying to step back and give adolescents opportunities to take in the province. Another challenge to accessing existing supports charge of their care. was the lack of awareness among families, often due to financial and communication barriers due to a largely immigrant population. Table 1. Demographic characteristics of adolescents. Characteristic Adolescents (N=19) Age in years, mean (SD) 15 (1.9) Sex, n (%) Female 12 (66) Male 6 (33) School grade, n (%) Grade 7 1 (12) Grade 8 6 (33) Grade 9 2 (11) Grade 10 1 (12) Grade 11 5 (27) Grade 12 2 (11) Other 1 (12) Diagnosis , n (%) Sickle cell disease hemoglobin SS 14 (77) Sickle cell disease hemoglobin SC 3 (16) In the past 6 months, how many times have you..., mean (SD) Been admitted to the hospital 2 (2.6) Been to an emergency department 1.05 (1.8) Current prescribed medications for sickle cell disease management , n (%) Acetaminophen 1 (5) Morphine 3 (16) Folic acid 5 (27) Hydroxyurea 5 (27) Penicillin 1 (5) Deferasirox 8 (44) Calcium 1 (5) Aspirin 4 (22) Salbutamol 1 (5) Fluticasone 1 (5) One participant did not respond to the entire questionnaire. N=2 did not respond; participants could list more than 1 diagnosis. N=1 did not respond. N=1 did not respond; participants could list more than 1 medication. http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.5 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al Table 2. Computer use of adolescents. Characteristic Adolescents (N=18) Do you use a computer at home?, n (%) Yes 17 (94) No 1 (5) In 1 week, how many hours do you use the computer?, n (%) Not at all 0 (0) <1 hour 1 (5) 1-2 hours 2 (11) 2-3 hours 0 (0) 3-4 hours 4 (22) 4-5 hours 1 (5) 5-6 hours 3 (16) 6-7 hours 3 (16) >7 hours 4 (22) Please circle the number that goes with how comfortable you feel using a computer, n (%) Not at all comfortable 0 (0) A little comfortable 0 (0) Comfortable 9 (50) Very comfortable 9 (50) One participant did not respond to the questionnaire. Table 3. Demographic characteristics of health care providers. Characteristic Health care providers (N=17) Age in years, mean (SD) 38.6 (7.2) Sex, n (%) Female 14 (82) Male 3 (17) Profession, n (%) Staff hematologist/oncologist 1 (5) Fellow 2 (11) Resident 3 (17) Staff nurse 4 (23) Advanced practice nurse 3 (17) Psychologist 2 (11) Other 4 (23) Number of years of health professional experience (including training), mean (SD) 17.6 (8.4) Number of years of pediatric hematology/oncology experience, mean (SD) 8 (7.9) Are you a parent?, n (%) Yes 6 (35) No 11 (64) http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.6 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al Textbox 2. Summary of themes and subthemes. Self-management and transitional care needs of adolescents with sickle cell disease (SCD) 1. Impact of SCD Uncertainty of SCD Impact on developing peer relationships Academic impact SCD is stigmatizing 2. Experiences and challenges of self-management The internet is a source of SCD-related education Managing emergency department visits Self-management is a joint effort Lack of system-level supports 3. Recommendations for self-management and transitional care Information to cope with and live with SCD Self-advocacy and communication Social support Information for future planning Transition is not one-size fits all 4. Perceptions about digital self-management program Facilitating transition care Accessibility Effectively engaging adolescents and families schedule did not lead to a crisis. HCPs and parents emphasized Recommendations for Self-Management and that adolescents should know specific information and terms to Transitional Care use when going to the emergency department to effectively advocate for themselves and expedite their care, especially to Information to Cope With and Live With Sickle Cell Disease HCPs who may be less knowledgeable about SCD. All groups voiced that understanding information about SCD was at the core of self-management. Adolescents wanted to Social Support know how they got the disease, symptoms, diagnosis, treatment All 3 groups discussed the importance of social support and options, different types of the disease, genetic components, and speaking to other adolescents with SCD. Adolescents found strategies for preventing vaso-occlusive crises. Adolescents social support from their peers with SCD was beneficial in were interested in knowing more about their limits to physical allowing them to talk about their experience with others who activity and how they could make the most of being involved had similar experiences. Parents and adolescents described the in activities without triggering a crisis. They discussed the benefits of a camp for kids with SCD and having a positive importance of understanding the steps to take during a crisis experience in terms of friendships and improvements in and how to manage it in terms of medication and care. Parents confidence. All groups mentioned the need for motivating role and HCPs believed adolescents needed to understand the models who had SCD and had achieved success in some form. consequences of nonadherence to medication. HCPs suggested Adolescents and HCPs also believed older adolescents with that empowering adolescents with strategies for preventing SCD mentoring younger children would be helpful in terms of crises could help them cope with the uncertainty of SCD. both social support and the transition process. Self-Advocacy and Communication Information for Future Planning Adolescents found that explaining SCD to teachers and peers All participants discussed the different impacts of SCD on future was difficult because they did not know the best way to describe planning, and they recommended that challenging topics should the disease or answer their questions. In addition, HCPs and be discussed early on so that adolescents could be given adolescents cited a need for learning strategies to communicate strategies to manage these issues. Adolescents mainly discussed about their disease to peers, teachers, professors, and future the impact of SCD in choosing postsecondary education or employers as part of their self-management. HCPs believed training. Adolescents emphasized wanting to balance their adolescents should learn to advocate for themselves to ensure ambitions with the realistic expectations of their disease as they they could succeed at school while ensuring the stress and http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.7 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al grew older. Adolescents as well as HCPs described a need to Perceptions About Digital Self-Management Program inform adolescents about the genetics of the disease to ensure Adolescents, parents, and HCPs felt that a digital they understood the impact it could have on their future self-management program could be very useful, and they were relationships and planning for children. HCPs believed this unanimous in their suggestions on features for a digital factor was important, especially given the lack of discussion self-management tool. Their recommendations for informational about the disease among families. HCPs and parents believed topics and features to include are summarized in Table 4. education regarding risk-taking behaviors such as alcohol, drugs, Facilitating Transition Care and sex and its effects on SCD was important for adolescents to learn about. Parents were concerned about the adverse effects Adolescents and parents believed a digital self-management drugs could have with their disease and highlighting the tool would be useful for transitioning to adult care as it could importance of that to their children. be used both independently and with families. Parents discussed the benefit of a website in cultivating independence in the Transition Is Not One-Size Fits All adolescents because it could be a self-directed activity. All Adolescents’ thoughts on the transition to adult health services groups also described the benefits of a reliable resource that depended on their disease severity. Some adolescents felt less could be privately accessed by teens to learn about sensitive worried because they rarely had crises. Patients, parents, and topics, as they may feel less comfortable speaking to HCPs and HCPs were in agreement that the ideal time for transition would parents about those topics. HCPs believed such a program could depend on the individual’s disease severity and cognitive be a medium to share these resources with families in an abilities. Adolescents expressed interest in being taught how to accessible way and provide educational resources for parents manage their condition on their own such as making their own to foster self-management behaviors among their adolescents. appointments and going to them alone. All participants emphasized that transition should be a gradual process. Table 4. Essential components of a digital sickle cell disease self-management program. Format Web-based or mobile app Educational content to include Medication Dosages; mechanism of action; side effects; consequences of nonadherence; alternative options for treatment; interactions with drugs, alcohol, and other risk-taking behaviors; cost of medication and coverage by insurance; addiction, tolerance, appropriate use; and safe-keeping medications What is SCD?; genetics of SCD; what happens during a vaso-occlusive crises crisis?; symptoms and Information about SCD types of SCD (eg, milder types, pica, priapism, enuresis); treatment options; complications of SCD; latest research and developments in SCD; and information on risk-taking behaviors Preventing crises and pain management Strategies to prevent vaso-occlusive crises (eg, keeping hydrated, limits to physical exertion, dressing in layers); how to manage stress in school?; what to do when a crisis comes on; how to make the most of being involved in school and activities without triggering a crisis; multimodal 3P approach to pain management (psychological, physical, pharmacological); at what point should I come to the hospital if I have a crisis?; and advocating for appropriate treatment at hospitals Resources Information about SCD organizations; social and financial supports available for SCD; available SCD- related education to families; and insurance information Communication Self-advocacy; keeping up with schoolwork; communicating with peers about SCD; communicating with teachers, professors, and employers about SCD; and communicating with HCP about SCD Future Guidance on pursuing successfully postsecondary education and careers; implications for relationships with others with sickle cell trait; and risk-taking behaviors and SCD such as drugs, alcohol, and sex Desired characteristics and features Cultural appropriateness Addressing misconceptions about SCD; plain language for immigrant populations; and communicating with extended family and community members about SCD Social support Forum or chat option to communicate with other youth with SCD; peer mentorship from older adolescents with SCD; and examples of role models Ask an HCP questions Forum to ask questions; submit a question to be answered by an HCP; and live chat with an HCP Interactive and multimedia Videos of youth explaining their experiences with SCD; visuals and diagrams; and games Safety and trustworthiness Username and password-protected use; monitored social features; and evidence-based medical and practical information SCD: sickle cell disease. HCP: health care provider. http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.8 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al Accessibility support for youth to succeed academically, and support to reduce the burden of the disease on families. Participants discussed the HCPs and parents both liked the accessibility of a digital stigmatization of the SCD and several unique issues for the self-management program, given the availability of the internet; Canadian context. HCPs highlighted the SCD-related stigma adolescents and HCPs believed a website or mobile phone app among adolescents’ ethnic communities. Previous studies with were potential platforms. One parent described the accessibility families of children with SCD in African settings found varying a digital program could provide, especially for those with limited levels of stigma toward SCD [33-36]. For families who financial resources and time to attend in-person education immigrate to Canada from these nations or have ancestry from sessions. these nations, negative beliefs toward SCD may linger. To Effectively Engaging Adolescents and Families address these issues, participants in our study highlighted that Adolescents, parents, and HCPs all believed the digital awareness and communication were critical in addressing these self-management program needed to effectively engage youth impacts and could be delivered through a digital tool. Moreover, and their families. Adolescents were less likely to use it if it HCPs and parents in our study discussed a perceived lack of was less engaging or too difficult to understand. All groups financial and practical supports and resources for SCD in were in strong agreement about the need for a chat room or Ontario, Canada. These findings appear to be reflected in a study social support feature for adolescents to connect with peers with examining the quality of information on SCD on the internet SCD to share their experiences and ideas and have emotional where none of the top 12 websites examined were of Canadian support from others going through similar experiences. Parents origin [37]. and adolescents had a concern about the safety of a digital Adolescents, parents, and HCPs focused on empowerment program and ensuring any social features had a way to safeguard through education and understanding SCD for self-management. that only the intended users were accessing the program and The importance that adolescents placed on medical information ensuring the privacy of adolescents. Finally, participants is consistent with the qualitative study with youth with SCD described the benefit of a program helping to reduce the stigma and thalassemia by Atkin et al, which suggests that information associated with the disease by educating the public about the is a resource that could offer a sense of control over adolescents’ disease and preventing misconceptions about the disease. lives, allowing them to develop preventative strategies and appropriate courses of action in response to crises [26]. This Discussion study extends those findings by identifying and articulating the specific topics of SCD information and self-management Principal Findings strategies needed for a digital self-management program. To the best of our knowledge, this is the first study that examines Developing self-advocacy skills and communication strategies the recommendations for a digital self-management and for communicating with peers, teachers, employers, and HCPs transitional care program for adolescents with SCD from the were highly emphasized by all groups as important in successful perspectives of adolescents, parents, and HCPs and re-examines self-management and transition to adult health care. Similar the impact of SCD on adolescents. Participants described the emphasis on these skills has also been described by adults with psychosocial impacts of SCD and provided recommendations SCD who shared their experiences in managing SCD in a for self-management and transitional care to address these qualitative study by Tanabe et al. Adults in that study concerns. Adolescents, parents, and HCPs endorsed a digital highlighted that they often had to be their own advocates and platform as an effective and accessible way to deliver this make things work for themselves even with the limitations of information and provided recommendations for tailoring the the disease [38]. These recommendations are also in accordance program to adolescents with SCD. Adolescents focused on with evidence showing that self-presentation and communication self-management experiences, especially those pertaining to of condition to HCPs reduces stigmatization and allows for school, friendships, and postsecondary education choices, better care [28,39]. whereas parents and HCPs focused on transitional care issues and sensitive topics. Adolescents in this study described self-management as a joint effort from everyone in their life; they sought support from Adolescents in this study described many of the psychosocial friends, their families, and HCPs. They also described a need impacts of their disease, which pose challenges in disease for social support from role models and peers with SCD. All self-management and transition to adult health care for this groups discussed the importance of social support for dealing population. These findings support what has previously been with negative emotions, feeling understood, and learning described in studies with adolescents and adults with SCD. self-management strategies. Social support and role models as These include difficulties in developing peer relationships; psychosocial interventions for SCD have been previously limitations in physical activity; school and activity absenteeism; investigated as potentially effective interventions for adolescents feelings of worry and uncertainty; disease-related stigma; and with SCD [40-43]. These findings were consistent with views negative responses from peers, teachers, and HCPs [3,4,25-32]. expressed by young adults in a qualitative study by Sobota et These challenges were described by participants in the context al examining the transitional care needs of young adults with of Ontario, Canada, and highlight the continued perceived SCD. Young adults in that study found that hearing about the challenges this population faces throughout childhood and transition process from someone who had already gone through adolescence. All participants highlighted the need for increased it was more compelling [44]. Adolescents in this study believed awareness of SCD among HCPs and school teachers, appropriate a digital self-management program was an effective way for http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.9 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al friends, peers, and families to learn about SCD and for them to interventions demonstrated limited involvement of parents [54]. connect with other youth with SCD. Majeed-Ariss et al suggested that future interventions take into account social and family processes in their delivery and harness All participants in this study preferred to learn about challenges opportunities to promote shared self-management skills and and considerations they would face in the future regarding knowledge [52]. postsecondary education, choosing a career, and risk-taking behaviors (eg, drugs, sex) early on. Parents and HCPs believed Limitations information on risk-taking behaviors provided on a digital The limitations of this study included the sample of participants medium would make it easier for adolescents to access this who were recruited from a single tertiary care pediatric center information. Previous studies among youth with chronic diseases and therefore limits generalizability of the findings. Individuals such as chronic pain or juvenile idiopathic arthritis identified willing to participate in the interviews may be more motivated similar information needs among adolescents and young adults to manage their condition or have a more serious disease; this [45,46]. This finding is also consistent with previous studies of may limit the transferability of the results. This study was adolescents’ preference for learning about health information initially conducted in 2012; thus, perceptions and ideas about on the Web, especially those regarding sensitive topics due to a potential digital self-management program may differ from the anonymity offered by the internet [47,48]. All groups of the current time (eg, changes in delivery platform preferences). participants in this study recommended a transitional care However, the focus of this study was on experiences and process beginning early in adolescence and tailored to the challenges related to adolescents managing SCD and the way spectrum of SCD severity. They emphasized a need for a gradual in which a hypothetical digital program could assist in this process that allowed adolescents to take responsibility for self-management. Thus, any potential digital self-management specific tasks in their health care. These findings are well aligned program for adolescents with SCD should adhere to with the findings of a systematic review of transition from contemporary norms in the platform and interface design while adolescent to adult care for SCD, which recommended that being informed by the core components described by participants transition programs be patient centric and flexible, and allow in this study. Furthermore, adolescent and parent participants adolescents to explore independence and develop skills for were not offered an interviewer of the same sex or race as them, managing SCD [49]. which may have prevented them from discussing more sensitive topics or speaking frankly with the interviewer. Atkin et al found Development of a digital self-management and transitional care that the sex of the interviewer may have been particularly program tailored for adolescents with SCD was well endorsed important for adolescents while their previous work with parents by all participants. Parents, adolescents, and HCPs highlighted of children with hemoglobinopathies found that race and sex the accessibility of a digital program for families. HCPs believed were important characteristics of interviewers [26,55]. Finally, that a potential mobile or Web-based program could be an due to availability and timeline of the study, only a small sample acceptable format to be used by families and could help to of parents was included, with no male caregivers included, address some of the stigmas among communities regarding the limiting the transferability of parents’ perspectives to other disease. Our findings are similar to those of a survey-based parents or caregivers. study conducted by Badawy et al regarding the mobile phone app preferences for medication adherence among adolescents In conclusion, participants in this study described the continued with SCD. Our study extends the findings of Badawy et al by challenges youth with SCD face in Ontario, Canada, and clearly describing in detail the important education topics to provided recommendations for addressing these. Participants cover and the format in which youth preferred to receive social found value in developing a digital self-management program support in a comprehensive digital self-management program to address some of these challenges. Their perspectives on and the benefits they perceived [50]. Our study exemplifies the challenges and recommendations for self-management and first step in effectively engaging patient and family users of transitional care will ensure the development of an acceptable digital interventions for chronic conditions by conducting a and relevant digital program that meets the current needs of thorough investigation of their needs to understand their intended adolescents. Adolescents with SCD recommend the creation of use and goal for these populations [51]. A systematic review of a digital self-management program that provides in-depth adolescents’ use of mobile phone and tablet apps for SCD-related education in an accessible manner; fosters management of chronic conditions identified 3 of 4 studies that self-advocacy and communications strategies to be used in involved patient input in the development of the app [52]. school, the workplace, and in health care settings; allows for However, only 1 of the 3 studies conducted an in-depth social support; and provides an avenue to address challenging qualitative examination of the requirements articulated by topics. This is the first study to identify the essential components patients and involved parents in the development process of a digital self-management and transitional care program for [52,53]. An earlier systematic review of the effectiveness of this population and identify these requirements in relation to internet self-management interventions on health outcomes in the psychosocial challenges that they face. adolescents with chronic conditions had similar findings, where http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.10 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al Acknowledgments The authors would like to extend heartfelt thanks to the 19 adolescents, 2 parents, and 17 HCPs for dedicating their time and sharing their perspectives on the self-management and transitional care needs of adolescents with SCD. Conflicts of Interest None declared. Multimedia Appendix 1 Themes and subthemes with exemplar quotations from participants. [PDF File (Adobe PDF File), 54KB - pediatrics_v1i2e11058_app1.pdf ] References 1. Hassell KL. 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[Medline: 9877334] Abbreviations CBT: cognitive behavioral therapy HCP: health care provider SCD: sickle cell disease Edited by G Eysenbach; submitted 16.05.18; peer-reviewed by A Sobota, S Badawy, A Rankine-Mullings; comments to author 28.06.18; revised version received 16.07.18; accepted 21.08.18; published 25.09.18 Please cite as: Kulandaivelu Y, Lalloo C, Ward R, Zempsky WT, Kirby-Allen M, Breakey VR, Odame I, Campbell F, Amaria K, Simpson EA, Nguyen C, George T, Stinson JN Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study JMIR Pediatr Parent 2018;1(2):e11058 URL: http://pediatrics.jmir.org/2018/2/e11058/ doi:10.2196/11058 PMID: ©Yalinie Kulandaivelu, Chitra Lalloo, Richard Ward, William T Zempsky, Melanie Kirby-Allen, Vicky R Breakey, Isaac Odame, Fiona Campbell, Khush Amaria, Ewurabena A Simpson, Cynthia Nguyen, Tessy George, Jennifer N Stinson. Originally published in JMIR Pediatrics and Parenting (http://pediatrics.jmir.org), 25.09.2018. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Pediatrics and Parenting, is properly cited. The complete bibliographic information, a link to the original publication on http://pediatrics.jmir.org, as well as this copyright and license information must be included. http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.13 (page number not for citation purposes) XSL FO RenderX http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JMIR Pediatrics and Parenting Pubmed Central

Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study

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©Yalinie Kulandaivelu, Chitra Lalloo, Richard Ward, William T Zempsky, Melanie Kirby-Allen, Vicky R Breakey, Isaac Odame, Fiona Campbell, Khush Amaria, Ewurabena A Simpson, Cynthia Nguyen, Tessy George, Jennifer N Stinson. Originally published in JMIR Pediatrics and Parenting (http://pediatrics.jmir.org), 25.09.2018.
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Abstract

Background: Accessible self-management interventions are critical for adolescents with sickle cell disease to better cope with their disease, improve health outcomes and health-related quality of life, and promote successful transition to adult health care services. However, very few comprehensive self-management and transitional care programs have been developed and tested in this population. Internet and mobile phone technologies can improve accessibility and acceptability of interventions to promote disease self-management in adolescents with sickle cell disease. Objective: The aim of this study was to qualitatively explore the following from the perspectives of adolescents, parents, and their health care providers: (1) the impact of sickle cell disease on adolescents to identify challenges to their self-management and transitional care and (2) determine the essential components of a digital self-management and transitional care program as the first phase to inform its development. Methods: A qualitative descriptive design utilizing audio-recorded, semistructured interviews was used. Adolescents (n=19, aged 12-19 years) and parents (n=2) participated in individual interviews, and health care providers (n=17) participated in focus group discussions and were recruited from an urban tertiary care pediatric hospital. Audio-recorded data were transcribed verbatim and organized into categories inductively, reflecting emerging themes using simple content analysis. http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.1 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al Results: Data were categorized into 4 major themes: (1) impact of sickle cell disease, (2) experiences and challenges of self-management, (3) recommendations for self-management and transitional care, and (4) perceptions about a digital self-management program. Themes included subcategories and the perspectives of adolescents, parents, and health care providers. Adolescents discussed more issues related to self-management, whereas health care providers and parents discussed issues related to transition to adult health services. Conclusions: Adolescents, parents, and health care providers described the continued challenges youth with sickle cell disease face in terms of psychosocial impacts and stigmatization. Participants perceived a benefit to alleviating some of these challenges through a digital self-management tool. They recommended that an effective digital self-management program should provide appropriate sickle cell disease–related education; guidance on developing self-advocacy and communication skills; empower adolescents with information for planning for their future; provide options for social support; and be designed to be engaging for both adolescents and parents to use. A digital platform to deliver these elements is an accessible and acceptable way to address the self-management and transitional care needs of adolescents. (JMIR Pediatr Parent 2018;1(2):e11058) doi:10.2196/11058 KEYWORDS sickle cell; adolescent; cell phone; self-management; internet; qualitative research; needs assessment; transitional care self-management and transitional care therapies to adolescents Introduction with SCD and their families. Sickle cell disease (SCD) is an inherited red blood cell disorder Information and communication technologies offer an accessible that predominantly affects individuals of African descent. platform for the delivery of health interventions for patients and Increased prevalence is also seen in Mediterranean, Caribbean, families [12-16]. Access to Web-based health interventions South and Central American, Arab, and East Indian populations eliminates geographic constraints, allows for anonymity, and [1]. SCD is caused by a genetic mutation that results in abnormal provides 24-hour access to disease-related information and hemoglobin, which makes blood cells rigid and sickled in shape. self-management strategies that may help patients feel more in These abnormal red cells can disrupt the flow of blood in small control of managing their health problems and minimize feelings vessels, resulting in hypoxia-reperfusion injury throughout the of isolation [12,13]. Digital interventions are treatments based body and its organs, causing episodes of painful vaso-occlusive on effective face-to-face interventions (eg, CBT) that are crises and organ damage. Cerebral infarcts resulting in transformed for delivery via the internet with the goal of neurological and neurocognitive deficits are the most feared improved health outcomes. Previous efforts in developing complications [2]. Negative consequences from recurrent pain interventions for adolescents with SCD have focused on in SCD include academic underachievement related to school medication adherence, symptom tracking, and CBT for pain absenteeism, limited physical activity, symptoms of depression management [17-20]. However, many of these programs are and anxiety, and disruption of interpersonal relations [3,4]. characterized by limited involvement of adolescents and their families in their development. Despite the suffering and burden associated with SCD, minimal research has focused on promoting disease self-management To date, no digital, comprehensive self-management and among adolescents with SCD, such as teaching skills to help transitional care program has been developed and evaluated in teens to cope with symptoms and manage their chronic illness. terms of improved health outcomes (symptom reduction and Many youth with SCD leave pediatric care without adequate improved transition readiness and health-related quality of life) transition preparation and subsequently do not successfully for adolescents with SCD. Thus, the aims of this study were to transfer to adult health care services [5,6], which may put them qualitatively examine the following from the perspectives of at risk for higher morbidity and earlier mortality during early adolescents, parents, and their health care providers (HCPs): adulthood years [5-7]. Therefore, improving health-related (1) examine the impact of SCD on adolescents to identify quality of life and ensuring successful transition to adult health challenges to their self-management and transitional care and care through better disease self-management is critical [5,6,8,9]. (2) determine the key components of a digital program for SCD self-management and transitional care for adolescents. Self-management interventions such as information-based material and cognitive behavioral therapies (CBTs) for SCD Methods have shown promise in symptom reduction and improved health-related quality of life [8,10,11]. However, the vast Patient and Parent Selection majority of adolescents with chronic health conditions do not Adolescents, parents, and HCPs were purposively recruited receive comprehensive self-management (eg, CBT) education from 1 large metropolitan tertiary care pediatric center in due to lack of access to these therapies. This limited accessibility Toronto, Canada. Adolescents were eligible to participate if is a function of the direct and indirect costs associated with they were (1) 12 to 19 years old, (2) diagnosed with SCD, and therapy as well as limited availability of trained professionals, (3) able to speak and read English and at least one of their particularly in nonurban areas [8]. There is a clear need to parents was able to speak and read English. Adolescents were develop accessible and acceptable ways to deliver excluded if they had (1) severe cognitive impairments or (2) http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.2 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al major medical or psychiatric concurrent illnesses, which medical information from the adolescent’s chart. The research precluded assessment of their self-management and transitional assistant conducted the individual interviews with adolescents care needs. Parents were eligible to participate if they were able and parents. Interview questions were based on a literature to speak and read English. review, followed by pilot testing with 2 to 3 adolescents with SCD and their parents, and modified based on their feedback Health Care Provider Selection (see Textbox 1 for semistructured interview guide). Interviews HCPs were eligible to participate if they (1) had worked in began with a broad introductory question, followed by questions pediatric hematology, general pediatrics, and emergency and probes to allow participants to elaborate on their medicine for at least 1 year at the time of the study and provided experiences. Refreshments and a small honorarium were care to adolescents with SCD and (2) could speak and read provided to compensate for participant time. English. HCP participants were recruited using posters describing the Study Design study and information sessions at the pediatric center. After obtaining consent from HCPs, a mutually convenient time was A descriptive qualitative design with semistructured, audiotaped set up for the focus group interviews once 5 to 7 participants individual interviews with adolescents with SCD and parents, were enrolled. HCPs were also asked to complete a questionnaire and focus group interviews with HCPs, were undertaken to on demographics. Trained members of the research team examine the impact of SCD on adolescents; to determine moderated the focus group discussions among the HCPs. During self-management and transitional care needs of adolescents with and immediately after the focus group discussions took place, SCD; and to inform the development of a Web-enabled the interviewer detailed field notes on their impressions of self-management and transitional care intervention [21,24]. participant responses and the interviewing process. All Individual interviews were utilized to gain an appreciation of individual and focus group interviews were audio-recorded and the perspectives of the individual adolescents and their parents, transcribed verbatim. uninfluenced by the views of others. Focus group interviews were conducted with HCPs to capitalize on communication and Data Analysis shared interaction to generate data and gain insight into specific All data from individual and focus group interviews and field issues in more depth [22]. notes were analyzed inductively using simple content analysis Procedures [23]. Transcribed data were managed using NVivo computer software program (QSR International). Demographic data were The local institutional research ethics board approved the study. analyzed using descriptive statistics in Microsoft Excel and used The research assistant obtained consent, arranged an individual to summarize the characteristics of the study participants. All interview with each of the parent and adolescent participants, data were read several times by 3 investigators (JNS, CN, and and asked them to complete questionnaires on demographics YK) to obtain an overall understanding, identify data codes, and on internet use. The research assistant completed a health and ensure that all comments were carefully considered and information questionnaire to gather additional demographic and included. Textbox 1. Broad questions in semistructured interview guide. 1. Can you tell me what it has been like for you/your son or daughter/adolescents to live with sickle cell disease (SCD)? 2. What do you think is important to know and do so that you/your son or daughter/adolescents can learn or manage (or take care of) your/their SCD? 3. What do you/your son or daughter/adolescents need to know about your/their SCD? 4. What do you/your son or daughter/adolescents need to know about in terms of how to manage or treat your/their SCD? 5. What do you/your son or daughter/adolescents need to know about drugs and other treatments and how they affect you/them? 6. Can you tell me what it is like for you/your son or daughter/adolescents when you/they come to the emergency department for a sickle cell crisis? 7. Can you tell me about how SCD affects the other aspects of your/your son or daughter/adolescents’ life? 8. What is it like (for your son or daughter/adolescents) to talk about your/their SCD to your/their doctors and nurses? Family? Friends? Teachers? 9. When you/your son or daughter/adolescents turn 18, you/they will be transferred from a pediatric hospital to an adult hospital. Have you thought about this? What do you think it will be like (for them)? 10. How do you think SCD will affect you/your son or daughter/adolescents’ in the future? 11. How have you/your son or daughter/adolescents learned about your/their SCD and how to manage and treat it? 12. If you/your son or daughter/adolescents had to tell someone else about what it’s like to have SCD and how to deal with it what would you/they tell them? 13. What do you think it would be like (for your son or daughter/adolescents) to learn more about your/their SCD from a web site made just for teens and young adults with SCD and their families? 14. Is there anything else you would like to tell us about what you think is important to know and do so that you/your son or daughter/adolescents can learn to take care of your/their SCD better? http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.3 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al As data were entered into the analyses, codes continued to be challenges of managing SCD during adolescence when youth generated, until there were no new data that could not be were going through many different transitions in their lives and categorized under existing codes. Codes were combined into were trying hard to fit in among their peers. higher-level themes, and the themes were checked against coded Academic Impact extracts and the entire dataset [23,24]. Disagreements were Adolescents discussed missing many days of school, especially addressed through discussion and consensus of all investigators. with crises and appointments, resulting in missed homework, lessons, tests, and projects and catching up with missed Results schoolwork. Keeping up with missed schoolwork was also a source of stress described by adolescents, parents, and HCPs. Participant Characteristics Adolescents described how keeping up with missed schoolwork A total of 19 adolescents, 2 parents, and 17 HCPs were recruited was a source of stress that caused vaso-occlusive crises. All 3 from March 2012 to August 2012. Adolescents and parents groups noted that teachers needed education on the disease so individually participated in the semistructured interviews, and that they would not be skeptical of adolescents’ symptoms or HCPs participated in focus groups. Participant demographics, absences. medical information, and internet and computer use are summarized in Tables 1 and 2. HCP demographics information Sickle Cell Disease Is Stigmatizing is summarized in Table 3. Of the 18 adolescents who responded Adolescents described difficulties in explaining their disease to to the internet and computer use questionnaire, 94% (17/18) others and dealing with negative responses from others, which had a computer with internet access and were either was echoed by HCPs. Negative responses from peers were often “comfortable” or “very comfortable” using the internet. exacerbated by negative responses and misunderstanding of their condition among teachers. HCPs described the racial stigma Self-Management and Transitional Care Needs of SCD among HCPs in emergency departments. Other HCPs The perspectives of participants were categorized into 4 major described the disease-related stigma adolescents faced when themes: “impact of sickle cell disease,” “experiences and they sought care, often being labeled as drug-seekers. HCPs challenges of self-management of SCD,” “recommendations also described the cultural stigma perceived to exist among for self-management and transitional care,” and “perceptions some of the ethnic groups who typically inherited SCD. of digital self-management program.” Subthemes for each of the major themes are summarized below and in Textbox 2; Experience and Challenges of Self-Management additional quotations illustrating the themes and subthemes can The Internet Is a Source of Sickle Cell Disease–Related be found in Multimedia Appendix 1. Education Impact of Sickle Cell Disease Adolescents learned about SCD from HCPs, parents, and frequently from the internet. However, using the internet to Uncertainty of Sickle Cell Disease learn more did not always meet their needs in a developmentally Adolescents, parents, and HCPs all described the challenges of appropriate way. Parents used the internet as a resource and managing the uncertainty of SCD. Parents and HCPs described informed their children about the disease. They knew which the uncertainty of complications such as strokes and downstream websites were more reputable and accurate than others to get consequences associated with them such as cognitive and vision their information. impairments. Adolescents worried about the uncertainty of vaso-occlusive crises and whether any feeling of pain would Managing Emergency Department Visits escalate into a crisis and whether it would affect school or Adolescents and parents highlighted a need for further awareness activities with friends. HCPs described the emotional impact and education among emergency department staff on SCD and this had on adolescents, resulting in frustration and a feeling of its management. HCPs described the challenges adolescents loss of control over their lives. would face in attending emergency departments that were not familiar with them or SCD; this often resulted in delays in pain Impact on Developing Peer Relationships management. Adolescents and parents found that they waited Adolescents reported frequently missing out on activities with too long for pain management at certain emergency departments friends, such as swimming and playing outside, along with and thus preferred visiting hospitals where emergency school events due to appointments and crises and described departments had implemented an SCD protocol or who had feeling different from their peers. Adolescents reported that this experience managing SCD vaso-occlusive crises. affected their ability to create and maintain friendships, especially when they were younger. Adolescents and parents Self-Management Is a Joint Effort described experiences of being bullied for seeming different Adolescents believed managing their disease was primarily their from their peers; however, some adolescents and parents found responsibility along with their parents, HCPs, and sometimes that as they grew older, it became easier to make friends who friends, and adolescents described it as a joint effort between were considerate of their condition. Other adolescents preferred everyone. They knew as they grew older, self-management was not to speak with friends or teachers about their disease and ultimately their own responsibility, but their parents were still kept it to themselves. Parents and HCPs found that children involved in reminding them to take their medication, make would also forgo strategies to prevent a crisis around their appointments, bring them to appointments, knowing when to friends because they wanted to fit in. HCPs discussed the go to the hospital, and to advocate for them when needed. http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.4 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al Adolescents said that they were starting to take their own Lack of System Level Supports medication and taking preventative measures against crises. Parents described the financial challenges of managing SCD. Having supportive friends and family, communicating with They took time off from work for hospital visits and emergency friends with SCD, and taking charge of their disease were all department admissions and felt worried when they had to go to strategies in their self-management. Parents said that they were work while their child was still in the hospital. HCPs discussed still mostly managing their teen’s disease but that they were the lack of dedicated financial and practical supports for SCD trying to step back and give adolescents opportunities to take in the province. Another challenge to accessing existing supports charge of their care. was the lack of awareness among families, often due to financial and communication barriers due to a largely immigrant population. Table 1. Demographic characteristics of adolescents. Characteristic Adolescents (N=19) Age in years, mean (SD) 15 (1.9) Sex, n (%) Female 12 (66) Male 6 (33) School grade, n (%) Grade 7 1 (12) Grade 8 6 (33) Grade 9 2 (11) Grade 10 1 (12) Grade 11 5 (27) Grade 12 2 (11) Other 1 (12) Diagnosis , n (%) Sickle cell disease hemoglobin SS 14 (77) Sickle cell disease hemoglobin SC 3 (16) In the past 6 months, how many times have you..., mean (SD) Been admitted to the hospital 2 (2.6) Been to an emergency department 1.05 (1.8) Current prescribed medications for sickle cell disease management , n (%) Acetaminophen 1 (5) Morphine 3 (16) Folic acid 5 (27) Hydroxyurea 5 (27) Penicillin 1 (5) Deferasirox 8 (44) Calcium 1 (5) Aspirin 4 (22) Salbutamol 1 (5) Fluticasone 1 (5) One participant did not respond to the entire questionnaire. N=2 did not respond; participants could list more than 1 diagnosis. N=1 did not respond. N=1 did not respond; participants could list more than 1 medication. http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.5 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al Table 2. Computer use of adolescents. Characteristic Adolescents (N=18) Do you use a computer at home?, n (%) Yes 17 (94) No 1 (5) In 1 week, how many hours do you use the computer?, n (%) Not at all 0 (0) <1 hour 1 (5) 1-2 hours 2 (11) 2-3 hours 0 (0) 3-4 hours 4 (22) 4-5 hours 1 (5) 5-6 hours 3 (16) 6-7 hours 3 (16) >7 hours 4 (22) Please circle the number that goes with how comfortable you feel using a computer, n (%) Not at all comfortable 0 (0) A little comfortable 0 (0) Comfortable 9 (50) Very comfortable 9 (50) One participant did not respond to the questionnaire. Table 3. Demographic characteristics of health care providers. Characteristic Health care providers (N=17) Age in years, mean (SD) 38.6 (7.2) Sex, n (%) Female 14 (82) Male 3 (17) Profession, n (%) Staff hematologist/oncologist 1 (5) Fellow 2 (11) Resident 3 (17) Staff nurse 4 (23) Advanced practice nurse 3 (17) Psychologist 2 (11) Other 4 (23) Number of years of health professional experience (including training), mean (SD) 17.6 (8.4) Number of years of pediatric hematology/oncology experience, mean (SD) 8 (7.9) Are you a parent?, n (%) Yes 6 (35) No 11 (64) http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.6 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al Textbox 2. Summary of themes and subthemes. Self-management and transitional care needs of adolescents with sickle cell disease (SCD) 1. Impact of SCD Uncertainty of SCD Impact on developing peer relationships Academic impact SCD is stigmatizing 2. Experiences and challenges of self-management The internet is a source of SCD-related education Managing emergency department visits Self-management is a joint effort Lack of system-level supports 3. Recommendations for self-management and transitional care Information to cope with and live with SCD Self-advocacy and communication Social support Information for future planning Transition is not one-size fits all 4. Perceptions about digital self-management program Facilitating transition care Accessibility Effectively engaging adolescents and families schedule did not lead to a crisis. HCPs and parents emphasized Recommendations for Self-Management and that adolescents should know specific information and terms to Transitional Care use when going to the emergency department to effectively advocate for themselves and expedite their care, especially to Information to Cope With and Live With Sickle Cell Disease HCPs who may be less knowledgeable about SCD. All groups voiced that understanding information about SCD was at the core of self-management. Adolescents wanted to Social Support know how they got the disease, symptoms, diagnosis, treatment All 3 groups discussed the importance of social support and options, different types of the disease, genetic components, and speaking to other adolescents with SCD. Adolescents found strategies for preventing vaso-occlusive crises. Adolescents social support from their peers with SCD was beneficial in were interested in knowing more about their limits to physical allowing them to talk about their experience with others who activity and how they could make the most of being involved had similar experiences. Parents and adolescents described the in activities without triggering a crisis. They discussed the benefits of a camp for kids with SCD and having a positive importance of understanding the steps to take during a crisis experience in terms of friendships and improvements in and how to manage it in terms of medication and care. Parents confidence. All groups mentioned the need for motivating role and HCPs believed adolescents needed to understand the models who had SCD and had achieved success in some form. consequences of nonadherence to medication. HCPs suggested Adolescents and HCPs also believed older adolescents with that empowering adolescents with strategies for preventing SCD mentoring younger children would be helpful in terms of crises could help them cope with the uncertainty of SCD. both social support and the transition process. Self-Advocacy and Communication Information for Future Planning Adolescents found that explaining SCD to teachers and peers All participants discussed the different impacts of SCD on future was difficult because they did not know the best way to describe planning, and they recommended that challenging topics should the disease or answer their questions. In addition, HCPs and be discussed early on so that adolescents could be given adolescents cited a need for learning strategies to communicate strategies to manage these issues. Adolescents mainly discussed about their disease to peers, teachers, professors, and future the impact of SCD in choosing postsecondary education or employers as part of their self-management. HCPs believed training. Adolescents emphasized wanting to balance their adolescents should learn to advocate for themselves to ensure ambitions with the realistic expectations of their disease as they they could succeed at school while ensuring the stress and http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.7 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al grew older. Adolescents as well as HCPs described a need to Perceptions About Digital Self-Management Program inform adolescents about the genetics of the disease to ensure Adolescents, parents, and HCPs felt that a digital they understood the impact it could have on their future self-management program could be very useful, and they were relationships and planning for children. HCPs believed this unanimous in their suggestions on features for a digital factor was important, especially given the lack of discussion self-management tool. Their recommendations for informational about the disease among families. HCPs and parents believed topics and features to include are summarized in Table 4. education regarding risk-taking behaviors such as alcohol, drugs, Facilitating Transition Care and sex and its effects on SCD was important for adolescents to learn about. Parents were concerned about the adverse effects Adolescents and parents believed a digital self-management drugs could have with their disease and highlighting the tool would be useful for transitioning to adult care as it could importance of that to their children. be used both independently and with families. Parents discussed the benefit of a website in cultivating independence in the Transition Is Not One-Size Fits All adolescents because it could be a self-directed activity. All Adolescents’ thoughts on the transition to adult health services groups also described the benefits of a reliable resource that depended on their disease severity. Some adolescents felt less could be privately accessed by teens to learn about sensitive worried because they rarely had crises. Patients, parents, and topics, as they may feel less comfortable speaking to HCPs and HCPs were in agreement that the ideal time for transition would parents about those topics. HCPs believed such a program could depend on the individual’s disease severity and cognitive be a medium to share these resources with families in an abilities. Adolescents expressed interest in being taught how to accessible way and provide educational resources for parents manage their condition on their own such as making their own to foster self-management behaviors among their adolescents. appointments and going to them alone. All participants emphasized that transition should be a gradual process. Table 4. Essential components of a digital sickle cell disease self-management program. Format Web-based or mobile app Educational content to include Medication Dosages; mechanism of action; side effects; consequences of nonadherence; alternative options for treatment; interactions with drugs, alcohol, and other risk-taking behaviors; cost of medication and coverage by insurance; addiction, tolerance, appropriate use; and safe-keeping medications What is SCD?; genetics of SCD; what happens during a vaso-occlusive crises crisis?; symptoms and Information about SCD types of SCD (eg, milder types, pica, priapism, enuresis); treatment options; complications of SCD; latest research and developments in SCD; and information on risk-taking behaviors Preventing crises and pain management Strategies to prevent vaso-occlusive crises (eg, keeping hydrated, limits to physical exertion, dressing in layers); how to manage stress in school?; what to do when a crisis comes on; how to make the most of being involved in school and activities without triggering a crisis; multimodal 3P approach to pain management (psychological, physical, pharmacological); at what point should I come to the hospital if I have a crisis?; and advocating for appropriate treatment at hospitals Resources Information about SCD organizations; social and financial supports available for SCD; available SCD- related education to families; and insurance information Communication Self-advocacy; keeping up with schoolwork; communicating with peers about SCD; communicating with teachers, professors, and employers about SCD; and communicating with HCP about SCD Future Guidance on pursuing successfully postsecondary education and careers; implications for relationships with others with sickle cell trait; and risk-taking behaviors and SCD such as drugs, alcohol, and sex Desired characteristics and features Cultural appropriateness Addressing misconceptions about SCD; plain language for immigrant populations; and communicating with extended family and community members about SCD Social support Forum or chat option to communicate with other youth with SCD; peer mentorship from older adolescents with SCD; and examples of role models Ask an HCP questions Forum to ask questions; submit a question to be answered by an HCP; and live chat with an HCP Interactive and multimedia Videos of youth explaining their experiences with SCD; visuals and diagrams; and games Safety and trustworthiness Username and password-protected use; monitored social features; and evidence-based medical and practical information SCD: sickle cell disease. HCP: health care provider. http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.8 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al Accessibility support for youth to succeed academically, and support to reduce the burden of the disease on families. Participants discussed the HCPs and parents both liked the accessibility of a digital stigmatization of the SCD and several unique issues for the self-management program, given the availability of the internet; Canadian context. HCPs highlighted the SCD-related stigma adolescents and HCPs believed a website or mobile phone app among adolescents’ ethnic communities. Previous studies with were potential platforms. One parent described the accessibility families of children with SCD in African settings found varying a digital program could provide, especially for those with limited levels of stigma toward SCD [33-36]. For families who financial resources and time to attend in-person education immigrate to Canada from these nations or have ancestry from sessions. these nations, negative beliefs toward SCD may linger. To Effectively Engaging Adolescents and Families address these issues, participants in our study highlighted that Adolescents, parents, and HCPs all believed the digital awareness and communication were critical in addressing these self-management program needed to effectively engage youth impacts and could be delivered through a digital tool. Moreover, and their families. Adolescents were less likely to use it if it HCPs and parents in our study discussed a perceived lack of was less engaging or too difficult to understand. All groups financial and practical supports and resources for SCD in were in strong agreement about the need for a chat room or Ontario, Canada. These findings appear to be reflected in a study social support feature for adolescents to connect with peers with examining the quality of information on SCD on the internet SCD to share their experiences and ideas and have emotional where none of the top 12 websites examined were of Canadian support from others going through similar experiences. Parents origin [37]. and adolescents had a concern about the safety of a digital Adolescents, parents, and HCPs focused on empowerment program and ensuring any social features had a way to safeguard through education and understanding SCD for self-management. that only the intended users were accessing the program and The importance that adolescents placed on medical information ensuring the privacy of adolescents. Finally, participants is consistent with the qualitative study with youth with SCD described the benefit of a program helping to reduce the stigma and thalassemia by Atkin et al, which suggests that information associated with the disease by educating the public about the is a resource that could offer a sense of control over adolescents’ disease and preventing misconceptions about the disease. lives, allowing them to develop preventative strategies and appropriate courses of action in response to crises [26]. This Discussion study extends those findings by identifying and articulating the specific topics of SCD information and self-management Principal Findings strategies needed for a digital self-management program. To the best of our knowledge, this is the first study that examines Developing self-advocacy skills and communication strategies the recommendations for a digital self-management and for communicating with peers, teachers, employers, and HCPs transitional care program for adolescents with SCD from the were highly emphasized by all groups as important in successful perspectives of adolescents, parents, and HCPs and re-examines self-management and transition to adult health care. Similar the impact of SCD on adolescents. Participants described the emphasis on these skills has also been described by adults with psychosocial impacts of SCD and provided recommendations SCD who shared their experiences in managing SCD in a for self-management and transitional care to address these qualitative study by Tanabe et al. Adults in that study concerns. Adolescents, parents, and HCPs endorsed a digital highlighted that they often had to be their own advocates and platform as an effective and accessible way to deliver this make things work for themselves even with the limitations of information and provided recommendations for tailoring the the disease [38]. These recommendations are also in accordance program to adolescents with SCD. Adolescents focused on with evidence showing that self-presentation and communication self-management experiences, especially those pertaining to of condition to HCPs reduces stigmatization and allows for school, friendships, and postsecondary education choices, better care [28,39]. whereas parents and HCPs focused on transitional care issues and sensitive topics. Adolescents in this study described self-management as a joint effort from everyone in their life; they sought support from Adolescents in this study described many of the psychosocial friends, their families, and HCPs. They also described a need impacts of their disease, which pose challenges in disease for social support from role models and peers with SCD. All self-management and transition to adult health care for this groups discussed the importance of social support for dealing population. These findings support what has previously been with negative emotions, feeling understood, and learning described in studies with adolescents and adults with SCD. self-management strategies. Social support and role models as These include difficulties in developing peer relationships; psychosocial interventions for SCD have been previously limitations in physical activity; school and activity absenteeism; investigated as potentially effective interventions for adolescents feelings of worry and uncertainty; disease-related stigma; and with SCD [40-43]. These findings were consistent with views negative responses from peers, teachers, and HCPs [3,4,25-32]. expressed by young adults in a qualitative study by Sobota et These challenges were described by participants in the context al examining the transitional care needs of young adults with of Ontario, Canada, and highlight the continued perceived SCD. Young adults in that study found that hearing about the challenges this population faces throughout childhood and transition process from someone who had already gone through adolescence. All participants highlighted the need for increased it was more compelling [44]. Adolescents in this study believed awareness of SCD among HCPs and school teachers, appropriate a digital self-management program was an effective way for http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.9 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al friends, peers, and families to learn about SCD and for them to interventions demonstrated limited involvement of parents [54]. connect with other youth with SCD. Majeed-Ariss et al suggested that future interventions take into account social and family processes in their delivery and harness All participants in this study preferred to learn about challenges opportunities to promote shared self-management skills and and considerations they would face in the future regarding knowledge [52]. postsecondary education, choosing a career, and risk-taking behaviors (eg, drugs, sex) early on. Parents and HCPs believed Limitations information on risk-taking behaviors provided on a digital The limitations of this study included the sample of participants medium would make it easier for adolescents to access this who were recruited from a single tertiary care pediatric center information. Previous studies among youth with chronic diseases and therefore limits generalizability of the findings. Individuals such as chronic pain or juvenile idiopathic arthritis identified willing to participate in the interviews may be more motivated similar information needs among adolescents and young adults to manage their condition or have a more serious disease; this [45,46]. This finding is also consistent with previous studies of may limit the transferability of the results. This study was adolescents’ preference for learning about health information initially conducted in 2012; thus, perceptions and ideas about on the Web, especially those regarding sensitive topics due to a potential digital self-management program may differ from the anonymity offered by the internet [47,48]. All groups of the current time (eg, changes in delivery platform preferences). participants in this study recommended a transitional care However, the focus of this study was on experiences and process beginning early in adolescence and tailored to the challenges related to adolescents managing SCD and the way spectrum of SCD severity. They emphasized a need for a gradual in which a hypothetical digital program could assist in this process that allowed adolescents to take responsibility for self-management. Thus, any potential digital self-management specific tasks in their health care. These findings are well aligned program for adolescents with SCD should adhere to with the findings of a systematic review of transition from contemporary norms in the platform and interface design while adolescent to adult care for SCD, which recommended that being informed by the core components described by participants transition programs be patient centric and flexible, and allow in this study. Furthermore, adolescent and parent participants adolescents to explore independence and develop skills for were not offered an interviewer of the same sex or race as them, managing SCD [49]. which may have prevented them from discussing more sensitive topics or speaking frankly with the interviewer. Atkin et al found Development of a digital self-management and transitional care that the sex of the interviewer may have been particularly program tailored for adolescents with SCD was well endorsed important for adolescents while their previous work with parents by all participants. Parents, adolescents, and HCPs highlighted of children with hemoglobinopathies found that race and sex the accessibility of a digital program for families. HCPs believed were important characteristics of interviewers [26,55]. Finally, that a potential mobile or Web-based program could be an due to availability and timeline of the study, only a small sample acceptable format to be used by families and could help to of parents was included, with no male caregivers included, address some of the stigmas among communities regarding the limiting the transferability of parents’ perspectives to other disease. Our findings are similar to those of a survey-based parents or caregivers. study conducted by Badawy et al regarding the mobile phone app preferences for medication adherence among adolescents In conclusion, participants in this study described the continued with SCD. Our study extends the findings of Badawy et al by challenges youth with SCD face in Ontario, Canada, and clearly describing in detail the important education topics to provided recommendations for addressing these. Participants cover and the format in which youth preferred to receive social found value in developing a digital self-management program support in a comprehensive digital self-management program to address some of these challenges. Their perspectives on and the benefits they perceived [50]. Our study exemplifies the challenges and recommendations for self-management and first step in effectively engaging patient and family users of transitional care will ensure the development of an acceptable digital interventions for chronic conditions by conducting a and relevant digital program that meets the current needs of thorough investigation of their needs to understand their intended adolescents. Adolescents with SCD recommend the creation of use and goal for these populations [51]. A systematic review of a digital self-management program that provides in-depth adolescents’ use of mobile phone and tablet apps for SCD-related education in an accessible manner; fosters management of chronic conditions identified 3 of 4 studies that self-advocacy and communications strategies to be used in involved patient input in the development of the app [52]. school, the workplace, and in health care settings; allows for However, only 1 of the 3 studies conducted an in-depth social support; and provides an avenue to address challenging qualitative examination of the requirements articulated by topics. This is the first study to identify the essential components patients and involved parents in the development process of a digital self-management and transitional care program for [52,53]. An earlier systematic review of the effectiveness of this population and identify these requirements in relation to internet self-management interventions on health outcomes in the psychosocial challenges that they face. adolescents with chronic conditions had similar findings, where http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.10 (page number not for citation purposes) XSL FO RenderX JMIR PEDIATRICS AND PARENTING Kulandaivelu et al Acknowledgments The authors would like to extend heartfelt thanks to the 19 adolescents, 2 parents, and 17 HCPs for dedicating their time and sharing their perspectives on the self-management and transitional care needs of adolescents with SCD. Conflicts of Interest None declared. Multimedia Appendix 1 Themes and subthemes with exemplar quotations from participants. [PDF File (Adobe PDF File), 54KB - pediatrics_v1i2e11058_app1.pdf ] References 1. Hassell KL. 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[Medline: 9877334] Abbreviations CBT: cognitive behavioral therapy HCP: health care provider SCD: sickle cell disease Edited by G Eysenbach; submitted 16.05.18; peer-reviewed by A Sobota, S Badawy, A Rankine-Mullings; comments to author 28.06.18; revised version received 16.07.18; accepted 21.08.18; published 25.09.18 Please cite as: Kulandaivelu Y, Lalloo C, Ward R, Zempsky WT, Kirby-Allen M, Breakey VR, Odame I, Campbell F, Amaria K, Simpson EA, Nguyen C, George T, Stinson JN Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study JMIR Pediatr Parent 2018;1(2):e11058 URL: http://pediatrics.jmir.org/2018/2/e11058/ doi:10.2196/11058 PMID: ©Yalinie Kulandaivelu, Chitra Lalloo, Richard Ward, William T Zempsky, Melanie Kirby-Allen, Vicky R Breakey, Isaac Odame, Fiona Campbell, Khush Amaria, Ewurabena A Simpson, Cynthia Nguyen, Tessy George, Jennifer N Stinson. Originally published in JMIR Pediatrics and Parenting (http://pediatrics.jmir.org), 25.09.2018. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Pediatrics and Parenting, is properly cited. The complete bibliographic information, a link to the original publication on http://pediatrics.jmir.org, as well as this copyright and license information must be included. http://pediatrics.jmir.org/2018/2/e11058/ JMIR Pediatr Parent 2018 | vol. 1 | iss. 2 | e11058 | p.13 (page number not for citation purposes) XSL FO RenderX

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