Abstract
Purpose
The purpose of this study was to understand the experience of parenting an adolescent with type 1 diabetes (T1DM); to develop a prototype of an eHealth program for parents of adolescents with T1DM; and to evaluate the prototype content and acceptability from the perspective of parents and health care providers.
Methods
A multi-phase method was used generating both qualitative and quantitative data at multiple time points. There were 27 parents of adolescents age 12–18 with T1DM and 16 health care providers who participated in semi-structured interviews to identify parental challenges; 53 parents and 27 providers evaluated the prototype. Thematic content analysis was used to analyze interview transcripts and descriptive statistics were used to summarize survey data.
Results
Challenges experienced by parents of adolescents with T1DM included: understanding the developmental and hormonal changes of adolescence that affect diabetes care, feeling tension between adolescent independence and parent control, communicating without nagging or conflict, transferring diabetes care responsibility safely, dealing with feelings of stress and distress, and perceiving a lack of resources for T1DM care and insufficient personal time for self-care. In the prototype evaluation, both parents and providers found content to be relevant and provided feedback to guide the development of the full program.
Conclusions
Parents of adolescents with T1DM and providers expressed a need for parents to have more support in transitioning diabetes care from parent to adolescent. eHealth programs offer an ideal way to address these needs and ultimately can be linked to electronic medical records improving quality and efficiency of health care in this population.
Keywords: eHealth, parents of adolescents with type 1 diabetes, parent stress, type 1 diabetes teamwork
Introduction
Type 1 diabetes (T1DM) is one of the most common chronic illnesses in children, affecting 1 in 400,1 with evidence that its prevalence is increasing worldwide.2 Parents of children with T1DM are responsible for a labor-intensive and complicated daily regimen that has been described as an overwhelming experience, requiring constant vigilance.3 Intensive management of T1DM requires frequent blood glucose monitoring, multiple insulin injections or use of an insulin pump, frequent alterations in insulin dose to match changing diet and activity patterns, and regular visits to health care providers.
As children reach adolescence and become more independent (12–18 years), there is increasing need for autonomy in diabetes management (after school activities, more time away with friends, learning to drive, etc). At the same time, greater independence, awareness about friends’ perceptions of their condition, and the hormonal changes which occur during puberty can lead to lower adherence to the treatment regimen, poor metabolic control, and subsequent complications.4 Later in adolescence (18–20 years), youth often transition to independent living, requiring complete independence in diabetes self-management. Consistent across these developmental phases is parental stress and distress, which parents describe as ‘constant worry’ and ‘chronic sorrow’.5 Despite initiatives to screen for and treat psychosocial problems in caregivers of people with diabetes,6 most providers do not have adequate time or resources to assess or treat these factors in the context of clinical visits.
Parents of children with T1DM report elevated rates of perceived stress and demonstrate an increased risk for depression and anxiety, with the prevalence of clinically significant symptoms ranging from 19–74%.7–9 Parental psychosocial stress has negative health implications for the parent, the overall functioning of the family, the psychological adjustment of their child with diabetes, diabetes management,2,10,11 and health outcomes (i.e., metabolic control).12–16 For example, reports of higher parental depressive symptoms have been associated with lower parental monitoring of diabetes management12 which plays an important role in daily decision-making. On the other hand, higher parental anxiety has been associated with greater parental involvement in diabetes management and less shared management, decreased ability of parents to learn how to manage diabetes, and lower parental self-efficacy,11,17 all of which could contribute to sub-optimal T1DM management as well as conflict between parent and child.
Despite these well-documented psychosocial needs, parents often perceive an absence of support from health professionals and a lack of understanding on the appropriate transfer of diabetes care to their child, particularly during adolescence.18–20 In addition, parents tend to primarily focus on their child’s health, rather than their own, lacking recognition that their psychological health is critical to their child’s wellbeing. Parents of children with T1DM need psychoeducational resources to decrease stress/distress, enhance their coping skills, and promote optimal self-management. An eHealth intervention for parents may offer a solution to meet these needs in a cost-efficient, widely accessible manner.
Family-based programs for parents and children with T1DM have been developed and evaluated21–25; yet these programs have not been widely disseminated due to the complexity of programs, associated costs, and a lack of access to professionals to implement the program. There are numerous commercial websites and smartphone apps for parents of children with T1DM (e.g. American Diabetes Association, Nightscout) that provide content on diabetes management, social networking, and the ability to track blood sugars and insulin doses. While these are important resources for parents of children with T1DM, few are evidence-based, and none offer a comprehensive approach to address the unique stressors of parents during the adolescent transition.
eHealth represents an excellent mode of delivery for a program for parents of children with T1DM across the spectrum of age, gender, socioeconomic status (SES), and race/ethnicity. Access to eHealth, particularly with multiple devices such as tablets and smartphones, is increasingly available to families with diverse race, ethnic, and SES backgrounds.26,27 An eHealth psychoeducational program offers many advantages including the ability to standardize content, use multimedia in a highly interactive interface, tailor content to individual responses, reach parents who may not have access to in-person psychosocial support, provide a tool clinicians can share with parents, and allow parents to participate at convenient times and/or in times of need.
In line with the recent call from the American Diabetes Association to address the psychosocial needs of people with diabetes and their caregivers, the purpose of this study was to understand the experience of parenting an adolescent with T1DM from the perspective of parents and health care providers; to develop a prototype of an eHealth program for parents of adolescents with T1DM; and to evaluate the prototype content and acceptability from the perspective of parents and health care providers.
Design, Methods, and Results by Phase
This research was conducted in three phases. During Phase 1, in-depth qualitative interviews were conducted with parents of adolescents with T1DM and health care providers to understand the challenges and needs during this developmental transition.28,29 In Phase 2, a prototype of the eHealth program [Type 1 Teamwork] was developed, and in Phase 3, a mixed-methods evaluation of the prototype was conducted with parents and providers. The study was approved by Yale University & New England Research Institutes Institutional Review Boards, and informed consent was obtained from all parents and providers. Trained researchers conducted all data collection and analysis.
Phase 1: Determine needs of parents of adolescents with T1DM
Parents of adolescents (12–18 years old) with T1DM were recruited through a pediatric endocrinology clinic in New Haven, the Juvenile Diabetes Research Foundation (JDRF) local chapters, Yahoo social media groups of parents of adolescents with T1DM, online discussion forums support groups (e.g. childrenwithdiabetes.com forum, Parents of T1DM Facebook group), and Craigslist. Health care providers were recruited through the same pediatric endocrinology clinic, professional meetings, and professional listservs.
Semi-structured interview guides were used to conduct interviews (phone or in-person) with parents of adolescents with T1DM and focus groups (in-person) with providers. Data were collected on their experiences/challenges in parenting an adolescent with T1DM, their health care needs, and factors to consider in developing an eHealth program on this topic. Results of these interviews informed the development of a prototype of an eHealth program for parents of adolescents with T1DM.
Interviews and focus groups were audio-recorded and transcribed by a professional transcription service and imported to a qualitative analysis program (Atlas.ti™). Data was analyzed both inductively (e.g. what did parents say about communication) and deductively (e.g. what did parents identify as particularly important considerations) using thematic content analysis.30 Analysts identified a preliminary start list of codes via line-by-line coding or “open coding”.31 Once a comprehensive code list was developed, all transcripts were coded, codes were collapsed into themes, and quotations exemplifying each theme were identified to illustrate how parents and providers conceptualized the central issues. Throughout the interpretation, the analysts applied principles for enhancing rigor and credibility: transparency of method, maximization of validity (including attention to deviant cases), maximization of reliability (including frequency counts of themes), constant comparison within the data set and within a case, and a reflexive approach to analysis.30
Results.
A total of 27 parents T1DM participated in these interviews. The sample was 96% female, the majority were white (85%), and all were parents with adolescents between 12 and 18 years of age with T1DM. More than half of the participants had adolescents with a diagnosis duration of 1–5 years, and they were equally split in terms of male and female youth (Table 1). Providers (n=16) had a variety of backgrounds including endocrinologists, nurse practitioners, physician assistants, diabetes educators, psychologists, and primary care physicians (Table 2). Providers were primarily white (94%), female (88%), and were more likely to be experienced in the care of adolescents with type 1 (70% of providers reported over ten years of experience).
Table 1.
Parent Characteristics of Phase 1 (n=27)
| Demographic Characteristics | n | % |
|---|---|---|
| Gender | ||
| Male | 1 | 3.7 |
| Female | 26 | 96.3 |
| Ethnicity | ||
| Hispanic | 1 | 3.7 |
| Non-Hispanic | 26 | 96.3 |
| Race | ||
| Black | 3 | 11.1 |
| White | 23 | 85.2 |
| Missing | 1 | 3.7 |
| Child’s Age (y)* | ||
| 12–13* | 15 | 53.6 |
| 14–15 | 6 | 21.4 |
| 16–18 | 7 | 25.0 |
| Child’s Age at Diagnosis (y)* | ||
| <1 | 2 | 7.1 |
| 1–5 | 11 | 39.3 |
| 6–10 | 9 | 32.1 |
| >10 | 6 | 21.4 |
| Child’s Gender* | ||
| Male | 14 | 50.0 |
| Female | 14 | 50.0 |
n=28, One parent had two children with T1DM
Table 2.
Provider Characteristics of Phase 1 (n=16)
| Demographic Characteristics | n | % |
|---|---|---|
| Gender | ||
| Male | 2 | 12.5 |
| Female | 14 | 87.5 |
| Ethnicity | ||
| Hispanic | 1 | 6.3 |
| Non-Hispanic | 15 | 93.8 |
| Race | ||
| White | 15 | 93.8 |
| More than one | 1 | 6.3 |
| Years of Experience | ||
| 1–5 | 3 | 18.8 |
| 6–10 | 2 | 12.5 |
| > 10 | 11 | 68.8 |
| Provider Type | ||
| Endocrinologist | 5 | 31.3 |
| Diabetes Educator | 2 | 12.5 |
| Psychologist | 1 | 6.3 |
| MD/Fellow | 3 | 18.8 |
| NP | 4 | 25.0 |
| PA | 1 | 6.3 |
Both parents and providers expressed enthusiasm about the proposed program and voiced a need for a comprehensive resource addressing this critical transition. Six overarching challenges emerged through a combined analysis of parent and provider transcripts (Table 3): 1) gaining a better understanding of the developmental and hormonal changes which occur during adolescence that can affect diabetes care, 2) balancing the tension between adolescent independence and parent control, 3) knowing how to communicate about diabetes care without ‘nagging’ or initiating conflict, 4) determining how to transfer diabetes care responsibility in a safe and effective manner, 5) managing personal feelings of worry, anxiety, and stress and insufficient personal time for self-care, 6) and perceiving a lack of resources for T1DM care during adolescence in particular. In order to fill a gap in existing resources, these challenges and subsequent needs directly informed the content areas of the Type 1 Teamwork eHealth program A list of these content themes with corresponding illustrative quotes from parents and providers are included in Table 3.
Table 3.
Content Topics identified by parents and health care providers
| Content Theme | Illustrative quotes from parents | Illustrative quotes from providers |
|---|---|---|
| Parenting an adolescent with T1DM | “We definitely face the struggles of trying to allow her the ability to have…just typical adolescent age freedom.” “The hormonal thing with adolescent girls…that’s my hardest. Hormones wreak havoc on blood sugars.” |
“It’s a real time of tumultuous change and it’s a little chaotic”. “It’s one of the craziest times of managing diabetes…changes that happen physiologically with puberty…and emotionally…and developmentally adolescents are trying to separate themselves.” |
| Developing a positive partnership between parents and adolescents |
“I feel like it’s…giving him the independence but still having some control.” “We try to talk together, plan together, of what’s going to help him reach his goals. I think that has helped.” |
“Diabetes really requires a team…it requires a present parent whose willing to fully participate in the adolescent’s life.” “Parents need help in learning “to be there in a way that is not intrusive, conflictual, and nagging to the kid…(more like), ‘we’re in this together’.” |
| Communicating positively with adolescents |
“I hate that I have to argue with her about diabetes.” “We need to know what to say without losing control and making the situation even worse.” |
“I’ve had parents tell me that they choose not to talk about diabetes because it’s too stressful for the family.” “Parents need to know how to talk to their kids without putting them on the defensive.” |
| Transferring responsibility to your adolescent |
“I get frustrated with him when he’s not being responsible, but then I get mad at myself for getting mad at him, because I realize he has a lot more on his plate than any kid I know.” “I have to prepare him for college and that scares me to death.” |
“Some of the biggest challenges for the parents are ‘am I OK to step back?’ They want to give them that freedom and yet they’re very scared about letting them develop into that independence.” “Independence is the big issue.” |
| Understanding the emotions parents experience |
“I feel guilty.”
“It can be a depressing thing.” “I can’t really tell her how worried I am.” “It’s always on the back of our minds…it’s difficult.” |
“There’s a lot of fear that their kid is going to die.”
“It’s a time of a lot of conflict and ambivalence about letting go and keeping it safe and then getting worn out with trying to keep the faith.” |
| Taking care of yourself |
“I don’t have any resources…I don’t have anybody that understands what I experience, what I go through, nobody.” “I think the most helpful resource is just the experience of other people who dealt with diabetes for a while.” |
“There’s a lot of guilt with parents – ‘am I too strict? Too nagging? Too babyish?’” “Parents need permission that they can relax too.” |
Phase 2: Develop web-based program prototype
Upon completion of the analysis of the interviews with parents and the focus groups with providers, a prototype of the Type 1 Teamwork program was created to reflect the identified challenges parents of adolescents with T1DM typically encounter. Clinical consultants provided expert advice on the development of the content. The prototype included the logo, landing page, placeholders for content themes, content for one learning module, a mock-up of individual family stories, and examples of interactivity (i.e., self-assessments, checklists, slideshows, videos). The learning module developed for the prototype, “Parents as Partners”, was designed to illustrate the range of content and technological approaches that would ultimately be included in the complete program. Specific topics within this learning module included: how to promote autonomy and responsibility when adolescents want greater independence; information about teen development and how this impacts teens with T1DM; strategies to build teens’ skillset; and techniques to effectively divide responsibility between parent and teen. The prototype also included an outline for the full program, indicating the content of the six sections, “Being a Parent”, “Parents as Partners”, “Communicate”, “Letting Go”, “Getting Emotional”, and “You Matter”. To describe the direction and content to be included, brief summaries were provided for the 5 undeveloped sections..
Phase 3: Evaluate web-based program prototype
Recruitment methods for this phase were the same as those used in Phase 1. To ensure that we addressed their initial recommendations, the sample included a portion of the participants from Phase 1 (33% of parents and 22% of providers) while all other participants were naïve to the program. In this phase, we conducted phone interviews with 53 parents, 18 of whom had participated in Phase 1. Demographics of parents and their adolescent were similar to the Phase 1 sample (Table 4). Online surveys were conducted with 27 health care providers, 6 of whom had participated in Phase 1. Similar to the first Phase, providers represented different health professions, were primarily female and white, with the majority having over five years of experience (Table 5).
Table 4.
Parent Characteristics of Phase 3 (n=53)
| Demographic Characteristics | n | % |
|---|---|---|
| Gender | ||
| Male | 2 | 3.8 |
| Female | 51 | 96.2 |
| Ethnicity | ||
| Hispanic | 4 | 7.5 |
| Non-Hispanic | 48 | 90.6 |
| Missing | 1 | 1.9 |
| Race | ||
| Black | 1 | 1.9 |
| White | 49 | 92.5 |
| Missing | 3 | 5.7 |
| Child’s Age (y)* | ||
| 12–13 | 19 | 34.5 |
| 14–15 | 24 | 43.6 |
| 16–18 | 11 | 20.0 |
| Missing | 1 | 1.8 |
| Child’s Age at Diagnosis (y)* | ||
| <1 | 5 | 9.1 |
| 1–5 | 25 | 45.5 |
| 6–10 | 15 | 27.3 |
| >10 | 10 | 18.2 |
| Child Gender* | ||
| Male | 28 | 50.9 |
| Female | 27 | 49.1 |
n=55, Two parents had two children with T1DM
Table 5.
Provider Characteristics of Phase 3 (n=27)
| Demographic Characteristics | n | % |
|---|---|---|
| Gender | ||
| Male | 0 | 0 |
| Female | 26 | 96.3 |
| Missing | 1 | 3.7 |
| Ethnicity | ||
| Hispanic | 2 | 7.4 |
| Non-Hispanic | 24 | 88.9 |
| Prefer not to answer | 1 | 3.7 |
| Race | ||
| Asian | 1 | 3.7 |
| Black | 1 | 3.7 |
| White | 22 | 81.5 |
| More than one | 1 | 3.7 |
| Prefer not to answer | 2 | 3.7 |
| Years of Experience | ||
| <1 | 3 | 11.1 |
| 1–5 | 8 | 29.6 |
| 6–10 | 2 | 7.4 |
| >10 | 13 | 48.1 |
| Missing | 1 | 3.7 |
| Provider Type | ||
| Endocrinologist | 4 | 14.8 |
| Diabetes Educator | 2 | 7.4 |
| Psychologist | 4 | 14.8 |
| MD/Fellow | 2 | 7.4 |
| NP | 9 | 33.3 |
| Other | 6 | 22.2 |
After informed consent was obtained, parents were provided a link to the program and asked to review the prototype of the website. Parents were asked to review the website prior to the phone interview and were directed to specific pages during the interview to provide detailed feedback and comments. Parents were asked to discuss their initial reactions to the website, what they liked, disliked, and anything that came to mind as they navigated through the program. The emphasis was on a constructive critique of the program, rather than approval, so that the program could be improved to meet their needs. Additional questions explored parental response to the overall content, the navigation structure of the website, and interactive features which aimed to enhance engagement.
Similar to the process for parents, providers were sent a link to the program and asked to review the prototype of the website. They also received a link to a secure online survey eliciting their perception about the accuracy of content, clarity and usefulness of content, and the likelihood they would recommend the tool to families in their practice.
Parent interviews were audio-recorded and transcribed verbatim. Thematic content analysis, as previously described for Phase 1, was used to analyze interview data as well as open-ended questions from the provider survey.30 Descriptive statistics were used to summarize the health care provider survey data.
Results.
Parents demonstrated enthusiasm and support for the prototype and offered insightful feedback about its strengths and areas for improvement. As one parent stated, “It’s a wonderful idea and so important!” and, “I want you to hurry up and finish this so I can use it.” Numerous others shared sentiments similar to one parent who indicated:
After my first phone interview, I was wondering why in the world anyone would want to create ANOTHER website about diabetes, when there was so much information out on the web. After seeing this, I say “BRAVO!” It was nothing like I expected… it’s really wonderful!
In their remarks parents also emphasized how the site felt authentic to their experiences and filled a gap in currently available resources. One parent communicated that the site was very comprehensive and “brought a lot of things that you might have to find bit by bit on other pages.”
When asked about the content of the site, parents generally felt that the six content themes were comprehensive, relevant to their experience, and offered useful information. Quite a few parents commented that the six themes taken together felt very comprehensive, one explained “I like the messages of the six things and those are all things I want to drill down and learn more about. I can relate to all of those topics.”
Many parents expressed that the program would be extremely helpful as they navigate the teen years and many found the prototype itself to be helpful, (e.g., “Overall, this would be beneficial I can see parts that would be really helpful for me.”). One parent explained, “All of the ones (topics) you have here have been an issue for us in parenting a adolescent who is type 1.” Another commented on the topics and the ease of moving through the website indicating, “I like the themes because it lets you kind of choose where you want to be.” Many parents spoke about how the website “engaged” them and held their attention. In fact, when asked what they liked best about the website parents often described the interactive features. For instance, one parent conveyed, “I really like all the interactive kinds of exercise you have there. They definitely are engaging me,” while another referencing the utility of these exercises explained “I love tools and tips and tricks because I am looking for tools, tips and tricks to help me!”
Parents validated the importance of including both the parent and adolescent perspective in the program and the focus on actionable information and problem-solving. They felt that integrating “real issues and real-life families” as well as “tips and tricks” from other parents throughout the program validated their experiences, helped them to connect to the material and offered meaningful information they could apply to challenges they encountered on a daily basis. In their comments, many parents shared additional topics they felt could be included such as how to work with adolescents who do not like to talk about diabetes; depression, drugs and alcohol, and how to discuss these topics with teens; and parental sleep deprivation (due to checking their adolescent’s blood glucose during the night).
Providers were equally as enthusiastic about the prototype (Tables 6 and 7) and felt that the content themes were relevant and important. For instance, one indicated, “I think the six topic areas were well thought out. Each topic interplays nicely with each other and is an important area to discuss.” Providers commented on the extent to which they felt the content was engaging and identified the interactive features as particularly valuable for parents. One provider explained “I LOVED the interactive features. I think it really made the website more interesting and will hold the interest of parents. It is much more of a tool than I was expecting.”
Table 6.
Provider Views on Relevancy of Six Topical Categories for Parents
| Not Very Relevant | Somewhat Relevant | Very Relevant | ||||
|---|---|---|---|---|---|---|
| n | % | n | % | n | % | |
| Being a Parent | 0 | 0.0 | 1 | 3.7 | 26 | 96.3 |
| Parents as Partners | 0 | 0.0 | 0 | 0.0 | 27 | 100.0 |
| Communicate | 0 | 0.0 | 0 | 0.0 | 27 | 100.0 |
| Letting Go | 0 | 0.0 | 0 | 0.0 | 27 | 100.0 |
| Getting Emotional | 1 | 3.7 | 1 | 3.7 | 25 | 92.6 |
| You Matter* | 1 | 3.8 | 0 | 0.0 | 25 | 96.2 |
n=26 due to unanswered survey items
Table 7.
Provider Views on Prototype Program for Parents
| Not Very (0–4) | Moderately (5–7) | Very (8–10) | ||||
|---|---|---|---|---|---|---|
| n | % | n | % | n | % | |
| Interesting | 0 | 0.0 | 7 | 25.9 | 20 | 74.1 |
| Useful | 1 | 3.7 | 3 | 11.1 | 23 | 85.2 |
| Easy to Understand* | 2 | 7.7 | 5 | 19.2 | 19 | 73.1 |
| Easy to Use | 0 | 0.0 | 3 | 11.1 | 24 | 88.9 |
| Met Needs* | 0 | 0.0 | 5 | 19.2 | 21 | 80.8 |
| Likely to Recommend* | 0 | 0.0 | 5 | 19.2 | 21 | 80.8 |
Providers rated each item on a scale of 0–10 with 0 being “not interesting/useful/etc.”, and 10 being “very interesting/useful/etc.”
n=26 due to unanswered survey items
When asked about their likelihood of recommending the program to families in their practice, the majority of health care providers indicated they were likely to recommend the website to parents in their practice and commented on the utility of this program. To this end, one stated, “Wow! This is something I have thought about and you put it together so nicely. It fills a void we have in our current practice and is such a great resource…..A chronic illness can so easily drain a family and they really need empowering resources like your website!” while another expressed “I honestly haven’t seen anything like this and I think it would be very helpful for many parents and families. I wish I could recommend it to my families now.”
Parents and providers also gave constructive feedback to guide the development of the complete program. While the majority parents responded favorably to the overall look of the website and many described the prototype as “clean” with “clear, nice clean lines” and indicated it was “definitely approachable”, a number of parents provided recommendations for improving the overall look and feel (“less clinical, more exciting”). Parents also suggested greater clarity for titles of content modules and providers in particular expressed the need to ensure content was written for those with lower health literacy levels. Providers also recommended having content delivered in shorter segments and including more graphics and visuals.
Discussion
In this multi-phase study, parents and providers of adolescents with T1DM expressed interest in and enthusiasm for an eHealth program to address the challenges of transferring diabetes care from parent to adolescents while simultaneously maintaining parent involvement and positive communication.32 Parents and providers also identified the inherent challenges of diabetes self-management during adolescence, the need for more resources, anda lack of time during clinic visits to address their concerns. While further evaluation of the use and effect of this eHealth program for parents of adolescents with T1DM is ongoing, there are several important clinical and research implications of this study.
Results of this research move beyond other qualitative and quantitative studies which have identified challenges associated with parenting an adolescent with T1DM,33,34 to learn from parents about their needs associated with these challenges and their preferences for how to improve their capacity to do so. Our data offers actionable findings to inform specific targets for education and intervention that may assist parents in gaining the knowledge, skills and insight to help with the successful transfer of responsibility to adolescents and to care for not only their youth, but also themselves, throughout this developmental phase. Offering parents strategies, coping skills, and concrete suggestions for how and when to safely transfer care responsibilities to their pre-adolescent or adolescent may enhance their ongoing involvement throughout adolescence. By helping adolescents and parents share their perspectives on specific challenges and promoting understanding and collaborative problem-solving,35 parents may gain concrete and usable skills which can also increase their wellbeing. All of these activities, which increase parental capacity to care, can contribute to reducing parental stress and anxiety during these transition years. In addition, assessing parental stress, anxiety, and depressive symptoms during the adolescent years with preventive care provided by social workers and/or clinical psychologists is warranted as recommended in the standards of care for adolescents with T1DM.6 Additional strategies to support parents during this developmental transition are provided in Table 6.
Further research on strategies to support families during the pre-adolescent, adolescent, and young adult years is recommended. Including stakeholders (parents and adolescents) and other professional perspectives (health care providers, web-designers, researchers) in the development of complex interventions, enhances the likelihood of meeting the needs of the intended audience (in this case, families and providers). In future research, assuring the inclusion of voices of families and providers from diverse racial and ethnic backgrounds is indicated. Despite the widespread uptake of digital use across adults from diverse racial and ethnic backgrounds, it was challenging to recruit families of diverse race/ethnicity in this study.
Supportive care for parents of adolescents with T1DM is needed. Ongoing development and evaluation of eHealth programs for parents of adolescents with T1DM is one strategy to address parental distress, enhance parental involvement during the adolescent years, and support adolescent independence, thus improving health outcomes for adolescents with T1DM and parents. The use of eHealth programs (web-based or mobile apps) may be particularly attractive to families and health care providers who have many competing demands. Thus, eHealth programs offer great potential as an adjunct to clinical care and a way to meet the needs of this high-risk population. eHealth programs will optimally be linked to clinical care for access to more in-depth support or treatment, when indicated.
Table 8.
Strategies to Promote Parent Involvement During Adolescence
| Topic | Strategy |
|---|---|
| Parenting an adolescent with T1DM | Educate and provide resources on the developmental and hormonal changes during adolescence and their effects on self-management and A1C levels |
| Developing a positive partnership between parents and adolescents | Discuss tension between adolescent independence and parental control Provide guidelines for transfer of tasks from parent to adolescent gradually and safely |
| Communicating positively with adolescents | Practice communication strategies to decrease adolescent perception of parental ‘nagging’ Identify parent and adolescent perspective on challenging situations Identify parent and adolescent responsibilities for T1DM care Identify strategies for when/how parent checks in with adolescent Encourage discussion of challenges and collaborative goal setting |
| Letting Go | Build adolescent motivation and self-confidence Encourage parents to think out loud when making diabetes-related decisions Allow adolescents to make decisions and discuss outcomes of decisions (positive and negative) Support parents in the ‘ups and downs’ of this transition |
| Understanding emotions | Normalize parents’ distress, and assess parents for clinically significant symptoms of anxiety and depression Promote multi-disciplinary care during adolescence with preventive appointments with social workers and/or clinical psychologists Refer parents to their health care providers or other supportive programs/providers as needed |
| Parent self-care | Encourage self-care in parents and stress the importance to adolescent health Encourage parents to seek support with other parents of adolescents with T1DM Refer to social media resources as appropriate |
Acknowledgments
Funding: This project was funded by a grant (1R43DK098857) from the National Institute of Diabetes and Digestive and Kidney Diseases.
Contributor Information
Robin Whittemore, Yale School of Nursing, West Haven, CT.
Rebekah M. Zincavage, New England Research Institutes, Watertown, MA.
Sarah S. Jaser, Vanderbilt University Medical Center, Nashville, TN.
Margaret Grey, Yale School of Nursing, West Haven, CT.
Julia L. Coleman, New England Research Institutes, Watertown, MA.
David Collett, Yale School of Nursing, West Haven, CT.
Roberta Delvy, Yale School of Nursing, West Haven, CT.
Bridget Basile Ibrahim, Yale School of Nursing, West Haven, CT.
Lisa D. Marceau, New England Research Institutes, Watertown, MA.
References
- 1.Liese AD, D’Agostino RB Jr., Hamman RF, et al. The burden of diabetes mellitus among US youth: prevalence estimates from the SEARCH for Diabetes in Youth Study. Pediatrics. 2006;118(4):1510–1518. [DOI] [PubMed] [Google Scholar]
- 2.Gale EA. The rise of childhood type 1 diabetes in the 20th century. Diabetes. 2002;51(12):3353–3361. [DOI] [PubMed] [Google Scholar]
- 3.Sullivan-Bolyai S, Deatrick J, Gruppuso P, Tamborlane W, Grey M. Constant vigilance: mothers’ work parenting young children with type 1 diabetes. J Pediatr Nurs. 2003;18(1):21–29. [DOI] [PubMed] [Google Scholar]
- 4.Borus JS, Laffel L. Adherence challenges in the management of type 1 diabetes in adolescents: prevention and intervention. Curr Opin Pediatr. 2010;22(4):405–411. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Whittemore R, Jaser S, Chao A, Jang M, Grey M. Psychological experience of parents of children with type 1 diabetes: a systematic mixed-studies review. Diabetes Educ. 2012;38(4):562–579. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Young-Hyman D, de Groot M, Hill-Briggs F, Gonzalez JS, Hood K, Peyrot M. Psychosocial Care for People With Diabetes: A Position Statement of the American Diabetes Association. Diabetes Care. 2016;39(12):2126–2140. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Jaser SS, Whittemore R, Ambrosino JB, Lindemann E, Grey M. Coping and psychosocial adjustment in mothers of young children with type 1 diabetes. Child Health Care. 2009;38:91–106. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Cadman D, Rosenbaum P, Boyle M, Offord DR. Children with chronic illness: family and parent demographic characteristics and psychosocial adjustment. Pediatrics. 1991;87(6):884–889. [PubMed] [Google Scholar]
- 9.Landolt MA, Ribi K, Laimbacher J, Vollrath M, Gnehm HE, Sennhauser FH. Posttraumatic stress disorder in parents of children with newly diagnosed type 1 diabetes. J Pediatr Psychol. 2002;27(7):647–652. [DOI] [PubMed] [Google Scholar]
- 10.Kaugars AS, Kichler JC, Alemzadeh R. Assessing readiness to change the balance of responsibility for managing type 1 diabetes mellitus: adolescent, mother, and father perspectives. Pediatr Diabetes. 2011;12(6):547–555. [DOI] [PubMed] [Google Scholar]
- 11.Cameron LD, Young MJ, Wiebe DJ. Maternal trait anxiety and diabetes control in adolescents with type 1 diabetes. J Pediatr Psychol. 2007;32(7):733–744. [DOI] [PubMed] [Google Scholar]
- 12.Eckshtain D, Ellis DA, Kolmodin K, Naar-King S. The effects of parental depression and parenting practices on depressive symptoms and metabolic control in urban youth with insulin dependent diabetes. J Pediatr Psychol. 2010;35(4):426–435. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Jaser SS, Grey M. A pilot study of observed parenting and adjustment in adolescents with type 1 diabetes and their mothers. J Pediatr Psychol. 2010;35(7):738–747. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Jaser SS, Whittemore R, Ambrosino JM, Lindemann E, Grey M. Mediators of depressive symptoms in children with type 1 diabetes and their mothers. J Pediatr Psychol. 2008;33(5):509–519. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Kovacs M, Iyengar S, Goldston D, Obrosky DS, Stewart J, Marsh J. Psychological functioning among mothers of children with insulin-dependent diabetes mellitus: a longitudinal study. J Consult Clin Psychol. 1990;58(2):189–195. [DOI] [PubMed] [Google Scholar]
- 16.Mitchell SJ, Hilliard ME, Mednick L, Henderson C, Cogen FR, Streisand R. Stress among fathers of young children with type 1 diabetes. Fam Syst Health. 2009;27(4):314–324. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Streisand R, Swift E, Wickmark T, Chen R, Holmes CS. Pediatric parenting stress among parents of children with type 1 diabetes: the role of self-efficacy, responsibility, and fear. J Pediatr Psychol. 2005;30(6):513–521. [DOI] [PubMed] [Google Scholar]
- 18.Bowes S, Lowes L, Warner J, Gregory JW. Chronic sorrow in parents of children with type 1 diabetes. J Adv Nurs. 2009;65(5):992–1000. [DOI] [PubMed] [Google Scholar]
- 19.Buckloh LM, Lochrie AS, Antal H, et al. Diabetes complications in youth: qualitative analysis of parents’ perspectives of family learning and knowledge. Diabetes Care. 2008;31(8):1516–1520. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Howe CJ, Ayala J, Dumser S, Buzby M, Murphy K. Parental expectations in the care of their children and adolescents with diabetes. J Pediatr Nurs. 2012;27(2):119–126. [DOI] [PubMed] [Google Scholar]
- 21.Anderson BJ, Brackett J, Ho J, Laffel LM. An office-based intervention to maintain parent-adolescent teamwork in diabetes management. Impact on parent involvement, family conflict, and subsequent glycemic control. Diabetes Care. 1999;22(5):713–721. [DOI] [PubMed] [Google Scholar]
- 22.Laffel LM, Vangsness L, Connell A, Goebel-Fabbri A, Butler D, Anderson BJ. Impact of ambulatory, family-focused teamwork intervention on glycemic control in youth with type 1 diabetes. J Pediatr. 2003;142(4):409–416. [DOI] [PubMed] [Google Scholar]
- 23.Ellis DA, Templin T, Naar-King S, et al. Multisystemic therapy for adolescents with poorly controlled type I diabetes: Stability of treatment effects in a randomized controlled trial. J Consult Clin Psychol. 2007;75(1):168–174. [DOI] [PubMed] [Google Scholar]
- 24.Grey M, Whittemore R, Jaser S, et al. Effects of coping skills training in school-age children with type 1 diabetes. Res Nurs Health. 2009;32(4):405–418. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Wysocki T, Harris MA, Greco P, et al. Randomized, controlled trial of behavior therapy for families of adolescents with insulin-dependent diabetes mellitus. J Pediatr Psychol. 2000;25(1):23–33. [DOI] [PubMed] [Google Scholar]
- 26.Livingston G, Parker K, Fox S. Latinos online, 2006–2008: Narrowing the gap. 2009; http:///pewhispanic.org/2009/12/22/latinos-online-2006-2008-narrowing-the-gap. Accessed July 1, 2012.
- 27.Pew Research Center. Demographics of teen internet users. 2009; http://pewinternet.org/Trend-Data-%28Teens%29/Whos-Online.aspx. Accessed 2011.
- 28.Kim H, Sefcik JS, Bradway C. Characteristics of Qualitative Descriptive Studies: A Systematic Review. Res Nurs Health. 2017;40(1):23–42. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Colorafi KJ, Evans B. Qualitative Descriptive Methods in Health Science Research. HERD. 2016;9(4):16–25. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Green J, Thorogood N. Qualitative Methods for Health Research. 2nd ed Thousand Oaks, CA: Sage; 2009. [Google Scholar]
- 31.Lofland J, Lofland L. Analyzing Social Settings: A Guide to Qualitative Observation and Analysis. 3rd ed Belmont, CA: Wadsworth Publishing; 1995. [Google Scholar]
- 32.Young MT, Lord JH, Patel NJ, Gruhn MA, Jaser SS. Good cop, bad cop: quality of parental involvement in type 1 diabetes management in youth. Curr Diab Rep. 2014;14(11):546. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Leonard BJ, Garwick A, Adwan JZ. Adolescents’ perceptions of parental roles and involvement in diabetes management. J Pediatr Nurs. 2005;20(6):405–414. [DOI] [PubMed] [Google Scholar]
- 34.Spencer J, Cooper H, Milton B. Qualitative studies of type 1 diabetes in adolescence: a systematic literature review. Pediatr Diabetes. 2010;11(5):364–375. [DOI] [PubMed] [Google Scholar]
- 35.Weinger K, O’Donnell KA, Ritholz MD. Adolescent views of diabetes-related parent conflict and support: a focus group analysis. J Adolesc Health. 2001;29(5):330–336. [DOI] [PMC free article] [PubMed] [Google Scholar]