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Diabetes in Emerging Adulthood: Transitions Lost in Translation
ARTICLE IN PRESS Can J Diabetes xxx (2016) 1–5
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Practical Diabetes
Diabetes in Emerging Adulthood: Transitions Lost in Translation Benjamin Markowitz BSc a, Janet A. Parsons BA, BScPT, MSc, PhD b,c, Andrew Advani BSc, MBChB(Hons), PhD, FRCP(UK) a,* a
Keenan Research Centre for Biomedical Science, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, Ontario, Canada Applied Health Research Centre, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, Ontario, Canada c Department of Physical Therapy and the Rehabilitation Science Institute, University of Toronto, Toronto, Ontario, Canada b
a r t i c l e i n f o Article history: Received 16 February 2016 Received in revised form 3 May 2016 Accepted 7 June 2016
Introduction In September 2015, the results of a survey conducted on behalf of an online insurance provider made the headlines of the British press. It reported that the average age at which respondents felt like “grown-ups” was 29 years (1), 11 years after individuals are regarded as legal adults by many societies across the globe. For young people with diabetes, the age of legal adulthood is typically the age at which their clinical care is transferred between pediatric and adult services, a process that is widely termed transition. From this time onward, young people must work within a healthcare structure that has done a poor job of keeping up with evolving self-perceptions. Here, we spotlight the growing rift between transitions in healthcare and transitions in today’s society. We report findings from our own Young Adult Diabetes Clinic and we propose that (often unrecognized by the medical system) family members of young adults with diabetes are bridging this rift.
The Long and Winding Road to Adulthood In many cultures, reaching the age of 18 years is an important milestone. It is the time when the person likely finishes high school and begins on the road to adulthood. In Canada, the age of legal adulthood (referred to as the age of majority) varies from 18 to 19 years, according to the province or territory. Unlike the discrete nature of the legal definition, people tend to view their own growth into adulthood as a much more gradual process. This growth entails the gradual separation from parental support and the adoption of adult-like roles in society, and it is marked by particular life events, such as leaving the parental home, entering full-time employment, forming stable relationships and becoming parents themselves. Over the past few decades, * Address for correspondence: Andrew Advani, BSc, MBChB(Hons), PhD, FRCP(UK), St. Michael’s Hospital, 6-151, 61 Queen Street East, Toronto, Ontario M5C 2T2, Canada. E-mail address: [email protected] 1499-2671 © 2016 Canadian Diabetes Association. http://dx.doi.org/10.1016/j.jcjd.2016.06.004
various societal, cultural and economic influences have caused remarkable shifts in the timing of these events. In the 2015 insurance survey, for instance, respondents cited “buying your first home” as the top sign of becoming an adult (1). Today, with rising house prices, only 1 in 10 people aged younger than 24 years can afford to buy a first home, down from 1 in 3 in the mid-1980s (2). Instead, more emerging adults are choosing to live in their parental homes for longer (3). Aside from the domicile, on a population level, emerging adults are staying in higher education for longer and delaying their entry into the labour market (4), and they are waiting longer before establishing stable long-term relationships (5). The result has been the evolution of a life stage that does not fit neatly into the traditional categorization of either adolescence or adulthood. This life stage has been termed emerging adulthood, and it broadly spans the ages between 18 and 29 years (6,7).
Healthcare Transitions in Emerging Adults with Diabetes The adolescent and early adult years are widely appreciated as being challenging times in the lives of persons with diabetes (8), when there is an increase in the risk for acute complications (9), risk for loss to follow up (10) and risk for the emergence of longterm complications (11). Only a minority of individuals are able to achieve guideline-recommended glycated hemoglobin A1C (A1C) targets (12), and suboptimal glycemic control during this phase of life is not inconsequential; a few years of elevated blood glucose levels increase the risk for complications, even decades later (13). Reflecting attempts to address these challenges, numerous articles in the medical literature describe strategies designed to ease the transition process. In general, these articles tend to discuss practicebased interventions, such as joint pediatric/adult clinics, transition navigators, dedicated transition clinics, education programs, skills training and out-of-hours phone support (14). They are, in essence, studies of healthcare transitions, focusing on the handover of medical care between the pediatric and adult settings, and their impact on practice has been modest, at best (15). For example, the
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2013 Canadian Diabetes Association Clinical Practice Guidelines contain chapters on the management of type 1 diabetes and type 2 diabetes in children and adolescents, but these apply only up to the age of 18 years (16). There is 1 relevant recommendation advocating specialized programs for transitioning care between pediatric and adult clinics, and this is supported by Grade C, Level 3 evidence: “Non-randomized clinical trial or cohort study; systematic overview or meta-analysis of level 3 studies” (16,17). Similarly, a 2011 position statement from the American Diabetes Association (with representation from a number of other stakeholder organizations) makes 14 recommendations for transition from pediatric to adult diabetes care systems, 8 of which are graded with the lowest level of evidence—“expert consensus or clinical experience”—and none of which are supported by the highest grade of evidence (18). This absence of impact on guideline recommendations is hardly surprising when one contrasts the omnipresent nature of diabetes against the 1 to 4 hours a year an emerging adult spends in the company of a healthcare provider (16).
Results Table 1 shows the clinical characteristics of the 112 emerging adults who attended the Young Adult Diabetes Clinic at St. Michael’s Hospital from September 2011 to April 2016 (the entire clinic population was 18 to 24 years of age). Of the clinic attenders, 95% had type 1 diabetes, and 39% were managed with the aid of continuous subcutaneous insulin infusion. Of the patients, 42 (38%) had attended a clinic visit at least once with a parent; 23 (21%) of the 112 attendees were lost to follow up (defined as failure to attend the clinic for at least 12 months), of whom 19 had never attended with a parent and 4 had attended at least 1 previous visit with a parent (Fisher exact test, p=0.031 vs. never attended with a parent). Because individuals with higher A1C levels are at an increased risk for loss to follow up (10), to examine the relationship between parental accompaniment at clinic visits and glycemic control, we compared the clinical characteristics of regular clinic attenders (defined as having had a clinic appointment within the past year and to having attended the clinic for at least a year). Table 2 shows the clinical characteristics of regular attenders (n=69) according to whether they had never attended a clinic visit with a parent, attended once
The Impact of Parental Influence on Diabetes Care during Emerging Adulthood: A Chart Review Background Away from the healthcare setting, separate transitions are taking place in emerging adults’ lives as they establish their independence; such changes are more gradual but, ultimately, more likely to equip individuals with the necessary self-management competencies. The individuals are transitioning from adolescence to adulthood, and diabetes responsibility is being transitioned from the caregiver to the emerging adult. Unlike the limited amount of time spent interacting with the healthcare team, today’s millenials are spending notably more time in the company of their parents. For instance, a 2013 poll of 1006 parents who had at least 1 child between 18 and 29 years of age reported that 56% of participants described themselves as being in contact with their emerging adult children “every day or almost every day” (19). In our own Young Adult Diabetes Clinic, we recognized a pattern of continued parental accompaniment to clinic appointments in a proportion of our emerging adults with diabetes. We speculated that this was a surrogate for parental involvement and we performed a chart review to compare the clinical characteristics of individuals who did or did not attend their appointments accompanied by a parent.
Table 1 Clinical characteristics of attendees at the Young Adult Diabetes Clinic at St. Michael’s Hospital between September 2011 and April 2016
n Number male Number with type 1 diabetes Age at first visit (years) Duration of diabetes at first visit (years) Number using CSII Number living with a parent or caregiver A1C at first visit (%) A1C at most recent visit (%) Number lost to follow up
Never attended with a parent
Attended with a parent
112 62 (55%) 106 (95%) 18.5±0.1 8.8±0.5 44 (39%) 88 (79%) 8.9±0.2 8.9±0.2 23 (21%)
70 40 (57%) 67 (96%) 18.8±0.2 9.4±0.6 30 (43%) 53 (76%) 9.1±0.3 8.9±0.2 19 (27%)
42 22 (52%) 39 (93%) 18.1±0.1* 7.8±0.8 14 (33%) 35 (83%) 8.6±0.3 8.8±0.3 4 (10%)*
Note: Values are mean ± SEM. * p<0.05 vs. never attended with a parent. A1C, glycated hemoglobin; CSII, continuous subcutaneous insulin infusion.
Table 2 Clinical characteristics of regular attenders at the Young Adult Diabetes Clinic at St. Michael’s Hospital according to parental accompaniment to appointments
Methodology The Young Adult Diabetes Clinic takes place at St. Michael’s Hospital on 3 afternoons each month. It is supported by an endocrinologist, diabetes nurse educator, dietitian and social worker. Following approval by the Research Ethics Board of St. Michael’s Hospital, we reviewed the charts of all clinic attendees from the clinic’s inception in September 2011 through April 21, 2016. We categorized clinic attenders into 1 of 3 groups: those who had never attended an appointment with a parent, those who had attended an appointment with a parent on 1 occasion (this was almost always the first appointment) and those who had attended an appointment with a parent on more than 1 occasion. Statistical significance was determined by 1-way ANOVA with a Fisher least significant difference post hoc comparison for multiple-group comparison and a Student t test for comparison between 2 groups, unless otherwise stated. All statistical analyses were performed using GraphPad Prism 6 for Mac OS X (GraphPad Software, San Diego, California, USA).
Total
n Number male Age at first visit (years) Duration of diabetes at first visit (years) Number using CSII Number living with a parent or caregiver A1C at first visit (%) A1C at most recent visit (%) Number with A1C >9.0% at most recent visit Average number of appointments attended each year
Never attended with a parent
Attended with a parent on 1 occasion
Attended with a parent on more than 1 occasion
41 26 (63%) 18.7±0.3 8.8±0.8 23 (56%) 29 (71%) 8.5±0.3 8.1±0.2 9 (22%)
14 9 (64%) 18.1±0.1 7.5±1.5 9 (64%) 12 (86%) 8.2±0.4 8.4±0.3 4 (29%)
14 8 (57%) 18.2±0.3 7.4±1.6 8 (57%) 12 (86%) 9.4±0.5 9.4±0.5* 7 (50%)†
3.1±0.1
3.2±0.4
2.6±0.2†
Notes: Regular attenders were defined as patients who had come to the clinic for at least 1 year and had attended within the past year. This does not, therefore, include patients who had their first visit within the past year or patients lost to follow up. * p<0.01 vs. never attended with a parent. † p<0.05. vs. never attended with a parent. A1C, glycated hemoglobin; CSII, continuous subcutaneous insulin infusion. Values are mean ± SEM.
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with a parent or attended more than once accompanied by a parent. In this comparison, we found that A1C levels were significantly higher in those who had attended an appointment with a parent more than once than in those who had never attended with a parent (A1C [%] never attended with a parent 8.1±0.2; attended more than once with a parent 9.4±0.5; p<0.01). Interpretation What does this snapshot suggest? It suggests that parental interest in the care of young persons with diabetes does not cease when their offsprings’ care is transitioned to the adult diabetes services. It also hints that family members exert some influence on continued engagement with the healthcare system and that this seems to be particularly important for emerging adults who find diabetes most challenging.
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others come through to the consulting room. However, we try to ensure some private time between emerging adults and healthcare providers to facilitate discussions about issues such as pregnancy planning and substance use. We often find that parents of emerging adults with diabetes contact our service between scheduled appointments. These enquiries can relate to administrative tasks, such as filling prescriptions, rescheduling appointments and completing government reimbursement forms, although they can also occasionally relate directly to enquiries about diabetes care and selfmanagement. Because of privacy restrictions, when parents attend the clinic with their emerging adults for a first appointment, we take this opportunity to agree on mutual expectations. The expectations, from the perspective of our service, are typically that we welcome parents’ involvement in the care of their children with diabetes (if desired by the patients), but that all communication should be between the team and the emerging adults, especially outside of clinic visits.
Involving Parents in the Care of Emerging Adults with Diabetes
Other practical considerations in structuring a service for emerging adults with diabetes
Theoretical considerations
Although the focus of this article is to spotlight 1) the rift in transitions in healthcare and life transitions in emerging adults with diabetes and 2) the role of parents in bridging this rift, there are several other practical considerations in establishing a transition clinic. Emerging adults encounter a number of issues that can influence diabetes control and that can, in turn, be influenced by diabetes and its treatment. Guidelines recommend that issues related to birth control and pregnancy planning, prevention of sexually transmitted illnesses, alcohol and recreational drug use, smoking and driving be discussed with emerging adults (American Diabetes Association recommendation number 13; evidence grading system level E, “expert consensus or clinical experience” [18]). In our experience, our patients’ busy lives (exams, summer camps, studying away from home, etc.) often preclude their attendance at the clinic more than 3 or 4 times a year. In an attempt to maximize the educational opportunity of each interaction, we have adopted a multidisciplinary clinic structure in which, at each visit, an emerging adult with diabetes will interact with several members of the healthcare team. The total lengths of individuals’ visits to the clinic may, thus, be longer than average for a typical adult diabetes appointment. We also offer appointments with the allied health team outside of regular clinic visits. It may also be helpful to schedule additional clinics at busier times of the year, which we have found to be in late December, April/May and late August, when university attenders are home for the holidays. Finally, it is imperative that the psychosocial impacts of diabetes be addressed in emerging adults. Approximately 1 in 5 emerging adults with type 1 diabetes experience depressive symptoms, and those who experience problems with social support are more likely to develop depressive symptoms (35). Emerging adults also face a number of added stresses and strains (e.g. financial worries, loss of parents’ insurance coverage), and in our clinic, they can receive practical guidance from a social worker, who will also screen for depression (36).
Although adolescent-parent relationships persist into emerging adulthood (20), relatively little is known about the influence of persistent parental responsibility for diabetes care among emerging adults. However, 1 study did find that a high level of family support was the strongest predictor of self-care in individuals aged 18 to 25 years with type 1 diabetes (21), and another study reported that a structured and organized family climate was associated with optimal glycemic control in emerging adults with type 1 diabetes (22). Intuitively, if individuals’ reliance on parental support persists into emerging adulthood, then the principles governing the impact of “shared self-management” are likely to be broadly similar to those influencing diabetes care during adolescence. In contrast to the emerging adult population, parental involvement in diabetes management during childhood and adolescence has generally been well studied (23–25). Parental involvement can have both positive and negative effects on diabetes outcomes for youth (26), and their influence appears to be tied to both the quantity and the quality of the involvement (27). Empathetic, collaborative relationships between parents and adolescents can have positive impacts on adherence and metabolic control (27,28). Conversely, intrusive or neglectful relationships or those that are perceived that way by adolescents can have detrimental effects (27,29,30). For instance, in 1 study that included 117 emerging adults with type 1 diabetes, supportive relationships with parents predicted better diabetes selfmanagement, whereas those who perceived their parents as being controlling experienced more depressive symptoms (31). The effects on parental welfare should also be appreciated. Greater parental responsibility has been linked to higher levels of “caregiver strain” (32), which can increase the likelihood of anxiety/depressive symptoms in the parents (33) and this, is turn, can adversely influence glycemic control in the adolescents (34). Practical considerations As we have already suggested, there are few recommendations for the management of emerging adults with diabetes that are supported by high-quality evidence and none that relate to the involvement of parents or other members of individuals’ support networks. The hints and tips that follow come from our own experience in our Young Adult Diabetes Clinic over the past 4 years. In terms of interactions with the parents of emerging adults with diabetes, we try to be flexible, according to the desires of the emerging adults. If they do attend clinic visits, some parents wait in the waiting room,
Future Directions There is a dearth of literature describing the needs of emerging adults with diabetes and the nature and impact of parental involvement in their diabetes care. This could be addressed best through a qualitative research approach employing narrative methodology and involving patients, healthcare providers and significant members of patients’ support networks, including, but not limited to, their parents. Indeed, the influence of other relationships
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should also be considered, including those with siblings and friends/ roommates as well as romantic relationships. What is more, the nature and significance of these relationships are likely to evolve over the emerging-adult years. The people who are providing social support to emerging adults with diabetes are likely to be quite different for persons at the age of 18 years and for persons in their late 20s. It is also important to consider the impact that being a caregiver has on people who provide this social support, who may be providing much of the structure around diabetes self-management but who may be overlooked by the conventional adult healthcare system. At the root of the ongoing involvement of parents (or other caregivers) in the “self-management” of emerging adults with diabetes may lie a disconnect between the responsibility expected by the adult service and an incomplete development of executive function in the persons with diabetes. The term executive function refers to the higher-level cognitive processes that organize the lower level cognitive functions required to achieve desired goals (37,38). Selfregulation is influenced by 2 primary domains of executive function: 1) the ability to plan, initiate and execute tasks and 2) the ability to inhibit, adjust and control emotional responses (39,40). Executive function is associated with diabetes self-management skills in younger individuals (41–43) and continues to significantly impact behaviour into emerging adulthood (44). However, it does not reach its peak until individuals’ mid-20s (45). It is likely that the selfmanagement expectations of adult diabetes services exceed the executive function capabilities of some emerging adults and that this gap is being bridged by parents or other members of the support network. However, there is a paucity of literature on this topic in emerging adults. Characterization of the role of executive function in diabetes self-management in emerging adults may inform the structuring of diabetes services and, indeed, may shed light on when the involvement of parents in diabetes care may be most beneficial (or even detrimental).
Conclusions As will always be the case, there are many 18-year-olds who are well equipped with the skills to manage their diabetes successfully and to navigate a sometimes complex healthcare system. The autonomy of these individuals should be fostered and encouraged. However, there are many other people in their late teens and early 20s who continue to rely upon the support of the family unit and to value that support. As stated in a recent poll of 1029 people 18 to 29 years old, “most young people still want their parents’ guidance and support as they navigate their way toward adulthood” (46). In the context of the modest effects seen in most practice interventions and the dangers imposed by therapeutic inertia, adult healthcare providers may wish to direct their attention to changing patterns in societal roles and expectations. Providers should recognize and accept that, even after legal adulthood, there are aspects of some individuals’ self-management that remain the de facto responsibility of their parents or other family members. These responsibilities could be direct (e.g. reminders to perform a capillary blood glucose test) or indirect (e.g. scheduling appointments and filling prescriptions); they may be advantageous or disabling; and they may impact both the patients and the caregivers. In the short term, parental control may promote better self-care. In the long term, whether this control ultimately impedes the acquisition of the necessary self-management skills required when parental influence is no longer present remains to be seen. A better understanding of the transitions taking place at home could improve adherence and outcomes where traditional interventions of healthcare transition have met with limited success.
Acknowledgements The authors thank Suela Cela, Jane Mason, Sandi Williams and the patients of the Young Adult Diabetes Clinic at St. Michael’s Hospital. This work was supported by a donation from the RDV Foundation.
Author Contributions BM, JAP and AA researched and wrote the article.
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Practical Diabetes
Diabetes in Emerging Adulthood: Transitions Lost in Translation Benjamin Markowitz BSc a, Janet A. Parsons BA, BScPT, MSc, PhD b,c, Andrew Advani BSc, MBChB(Hons), PhD, FRCP(UK) a,* a
Keenan Research Centre for Biomedical Science, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, Ontario, Canada Applied Health Research Centre, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, Ontario, Canada c Department of Physical Therapy and the Rehabilitation Science Institute, University of Toronto, Toronto, Ontario, Canada b
a r t i c l e i n f o Article history: Received 16 February 2016 Received in revised form 3 May 2016 Accepted 7 June 2016
Introduction In September 2015, the results of a survey conducted on behalf of an online insurance provider made the headlines of the British press. It reported that the average age at which respondents felt like “grown-ups” was 29 years (1), 11 years after individuals are regarded as legal adults by many societies across the globe. For young people with diabetes, the age of legal adulthood is typically the age at which their clinical care is transferred between pediatric and adult services, a process that is widely termed transition. From this time onward, young people must work within a healthcare structure that has done a poor job of keeping up with evolving self-perceptions. Here, we spotlight the growing rift between transitions in healthcare and transitions in today’s society. We report findings from our own Young Adult Diabetes Clinic and we propose that (often unrecognized by the medical system) family members of young adults with diabetes are bridging this rift.
The Long and Winding Road to Adulthood In many cultures, reaching the age of 18 years is an important milestone. It is the time when the person likely finishes high school and begins on the road to adulthood. In Canada, the age of legal adulthood (referred to as the age of majority) varies from 18 to 19 years, according to the province or territory. Unlike the discrete nature of the legal definition, people tend to view their own growth into adulthood as a much more gradual process. This growth entails the gradual separation from parental support and the adoption of adult-like roles in society, and it is marked by particular life events, such as leaving the parental home, entering full-time employment, forming stable relationships and becoming parents themselves. Over the past few decades, * Address for correspondence: Andrew Advani, BSc, MBChB(Hons), PhD, FRCP(UK), St. Michael’s Hospital, 6-151, 61 Queen Street East, Toronto, Ontario M5C 2T2, Canada. E-mail address: [email protected] 1499-2671 © 2016 Canadian Diabetes Association. http://dx.doi.org/10.1016/j.jcjd.2016.06.004
various societal, cultural and economic influences have caused remarkable shifts in the timing of these events. In the 2015 insurance survey, for instance, respondents cited “buying your first home” as the top sign of becoming an adult (1). Today, with rising house prices, only 1 in 10 people aged younger than 24 years can afford to buy a first home, down from 1 in 3 in the mid-1980s (2). Instead, more emerging adults are choosing to live in their parental homes for longer (3). Aside from the domicile, on a population level, emerging adults are staying in higher education for longer and delaying their entry into the labour market (4), and they are waiting longer before establishing stable long-term relationships (5). The result has been the evolution of a life stage that does not fit neatly into the traditional categorization of either adolescence or adulthood. This life stage has been termed emerging adulthood, and it broadly spans the ages between 18 and 29 years (6,7).
Healthcare Transitions in Emerging Adults with Diabetes The adolescent and early adult years are widely appreciated as being challenging times in the lives of persons with diabetes (8), when there is an increase in the risk for acute complications (9), risk for loss to follow up (10) and risk for the emergence of longterm complications (11). Only a minority of individuals are able to achieve guideline-recommended glycated hemoglobin A1C (A1C) targets (12), and suboptimal glycemic control during this phase of life is not inconsequential; a few years of elevated blood glucose levels increase the risk for complications, even decades later (13). Reflecting attempts to address these challenges, numerous articles in the medical literature describe strategies designed to ease the transition process. In general, these articles tend to discuss practicebased interventions, such as joint pediatric/adult clinics, transition navigators, dedicated transition clinics, education programs, skills training and out-of-hours phone support (14). They are, in essence, studies of healthcare transitions, focusing on the handover of medical care between the pediatric and adult settings, and their impact on practice has been modest, at best (15). For example, the
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2013 Canadian Diabetes Association Clinical Practice Guidelines contain chapters on the management of type 1 diabetes and type 2 diabetes in children and adolescents, but these apply only up to the age of 18 years (16). There is 1 relevant recommendation advocating specialized programs for transitioning care between pediatric and adult clinics, and this is supported by Grade C, Level 3 evidence: “Non-randomized clinical trial or cohort study; systematic overview or meta-analysis of level 3 studies” (16,17). Similarly, a 2011 position statement from the American Diabetes Association (with representation from a number of other stakeholder organizations) makes 14 recommendations for transition from pediatric to adult diabetes care systems, 8 of which are graded with the lowest level of evidence—“expert consensus or clinical experience”—and none of which are supported by the highest grade of evidence (18). This absence of impact on guideline recommendations is hardly surprising when one contrasts the omnipresent nature of diabetes against the 1 to 4 hours a year an emerging adult spends in the company of a healthcare provider (16).
Results Table 1 shows the clinical characteristics of the 112 emerging adults who attended the Young Adult Diabetes Clinic at St. Michael’s Hospital from September 2011 to April 2016 (the entire clinic population was 18 to 24 years of age). Of the clinic attenders, 95% had type 1 diabetes, and 39% were managed with the aid of continuous subcutaneous insulin infusion. Of the patients, 42 (38%) had attended a clinic visit at least once with a parent; 23 (21%) of the 112 attendees were lost to follow up (defined as failure to attend the clinic for at least 12 months), of whom 19 had never attended with a parent and 4 had attended at least 1 previous visit with a parent (Fisher exact test, p=0.031 vs. never attended with a parent). Because individuals with higher A1C levels are at an increased risk for loss to follow up (10), to examine the relationship between parental accompaniment at clinic visits and glycemic control, we compared the clinical characteristics of regular clinic attenders (defined as having had a clinic appointment within the past year and to having attended the clinic for at least a year). Table 2 shows the clinical characteristics of regular attenders (n=69) according to whether they had never attended a clinic visit with a parent, attended once
The Impact of Parental Influence on Diabetes Care during Emerging Adulthood: A Chart Review Background Away from the healthcare setting, separate transitions are taking place in emerging adults’ lives as they establish their independence; such changes are more gradual but, ultimately, more likely to equip individuals with the necessary self-management competencies. The individuals are transitioning from adolescence to adulthood, and diabetes responsibility is being transitioned from the caregiver to the emerging adult. Unlike the limited amount of time spent interacting with the healthcare team, today’s millenials are spending notably more time in the company of their parents. For instance, a 2013 poll of 1006 parents who had at least 1 child between 18 and 29 years of age reported that 56% of participants described themselves as being in contact with their emerging adult children “every day or almost every day” (19). In our own Young Adult Diabetes Clinic, we recognized a pattern of continued parental accompaniment to clinic appointments in a proportion of our emerging adults with diabetes. We speculated that this was a surrogate for parental involvement and we performed a chart review to compare the clinical characteristics of individuals who did or did not attend their appointments accompanied by a parent.
Table 1 Clinical characteristics of attendees at the Young Adult Diabetes Clinic at St. Michael’s Hospital between September 2011 and April 2016
n Number male Number with type 1 diabetes Age at first visit (years) Duration of diabetes at first visit (years) Number using CSII Number living with a parent or caregiver A1C at first visit (%) A1C at most recent visit (%) Number lost to follow up
Never attended with a parent
Attended with a parent
112 62 (55%) 106 (95%) 18.5±0.1 8.8±0.5 44 (39%) 88 (79%) 8.9±0.2 8.9±0.2 23 (21%)
70 40 (57%) 67 (96%) 18.8±0.2 9.4±0.6 30 (43%) 53 (76%) 9.1±0.3 8.9±0.2 19 (27%)
42 22 (52%) 39 (93%) 18.1±0.1* 7.8±0.8 14 (33%) 35 (83%) 8.6±0.3 8.8±0.3 4 (10%)*
Note: Values are mean ± SEM. * p<0.05 vs. never attended with a parent. A1C, glycated hemoglobin; CSII, continuous subcutaneous insulin infusion.
Table 2 Clinical characteristics of regular attenders at the Young Adult Diabetes Clinic at St. Michael’s Hospital according to parental accompaniment to appointments
Methodology The Young Adult Diabetes Clinic takes place at St. Michael’s Hospital on 3 afternoons each month. It is supported by an endocrinologist, diabetes nurse educator, dietitian and social worker. Following approval by the Research Ethics Board of St. Michael’s Hospital, we reviewed the charts of all clinic attendees from the clinic’s inception in September 2011 through April 21, 2016. We categorized clinic attenders into 1 of 3 groups: those who had never attended an appointment with a parent, those who had attended an appointment with a parent on 1 occasion (this was almost always the first appointment) and those who had attended an appointment with a parent on more than 1 occasion. Statistical significance was determined by 1-way ANOVA with a Fisher least significant difference post hoc comparison for multiple-group comparison and a Student t test for comparison between 2 groups, unless otherwise stated. All statistical analyses were performed using GraphPad Prism 6 for Mac OS X (GraphPad Software, San Diego, California, USA).
Total
n Number male Age at first visit (years) Duration of diabetes at first visit (years) Number using CSII Number living with a parent or caregiver A1C at first visit (%) A1C at most recent visit (%) Number with A1C >9.0% at most recent visit Average number of appointments attended each year
Never attended with a parent
Attended with a parent on 1 occasion
Attended with a parent on more than 1 occasion
41 26 (63%) 18.7±0.3 8.8±0.8 23 (56%) 29 (71%) 8.5±0.3 8.1±0.2 9 (22%)
14 9 (64%) 18.1±0.1 7.5±1.5 9 (64%) 12 (86%) 8.2±0.4 8.4±0.3 4 (29%)
14 8 (57%) 18.2±0.3 7.4±1.6 8 (57%) 12 (86%) 9.4±0.5 9.4±0.5* 7 (50%)†
3.1±0.1
3.2±0.4
2.6±0.2†
Notes: Regular attenders were defined as patients who had come to the clinic for at least 1 year and had attended within the past year. This does not, therefore, include patients who had their first visit within the past year or patients lost to follow up. * p<0.01 vs. never attended with a parent. † p<0.05. vs. never attended with a parent. A1C, glycated hemoglobin; CSII, continuous subcutaneous insulin infusion. Values are mean ± SEM.
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with a parent or attended more than once accompanied by a parent. In this comparison, we found that A1C levels were significantly higher in those who had attended an appointment with a parent more than once than in those who had never attended with a parent (A1C [%] never attended with a parent 8.1±0.2; attended more than once with a parent 9.4±0.5; p<0.01). Interpretation What does this snapshot suggest? It suggests that parental interest in the care of young persons with diabetes does not cease when their offsprings’ care is transitioned to the adult diabetes services. It also hints that family members exert some influence on continued engagement with the healthcare system and that this seems to be particularly important for emerging adults who find diabetes most challenging.
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others come through to the consulting room. However, we try to ensure some private time between emerging adults and healthcare providers to facilitate discussions about issues such as pregnancy planning and substance use. We often find that parents of emerging adults with diabetes contact our service between scheduled appointments. These enquiries can relate to administrative tasks, such as filling prescriptions, rescheduling appointments and completing government reimbursement forms, although they can also occasionally relate directly to enquiries about diabetes care and selfmanagement. Because of privacy restrictions, when parents attend the clinic with their emerging adults for a first appointment, we take this opportunity to agree on mutual expectations. The expectations, from the perspective of our service, are typically that we welcome parents’ involvement in the care of their children with diabetes (if desired by the patients), but that all communication should be between the team and the emerging adults, especially outside of clinic visits.
Involving Parents in the Care of Emerging Adults with Diabetes
Other practical considerations in structuring a service for emerging adults with diabetes
Theoretical considerations
Although the focus of this article is to spotlight 1) the rift in transitions in healthcare and life transitions in emerging adults with diabetes and 2) the role of parents in bridging this rift, there are several other practical considerations in establishing a transition clinic. Emerging adults encounter a number of issues that can influence diabetes control and that can, in turn, be influenced by diabetes and its treatment. Guidelines recommend that issues related to birth control and pregnancy planning, prevention of sexually transmitted illnesses, alcohol and recreational drug use, smoking and driving be discussed with emerging adults (American Diabetes Association recommendation number 13; evidence grading system level E, “expert consensus or clinical experience” [18]). In our experience, our patients’ busy lives (exams, summer camps, studying away from home, etc.) often preclude their attendance at the clinic more than 3 or 4 times a year. In an attempt to maximize the educational opportunity of each interaction, we have adopted a multidisciplinary clinic structure in which, at each visit, an emerging adult with diabetes will interact with several members of the healthcare team. The total lengths of individuals’ visits to the clinic may, thus, be longer than average for a typical adult diabetes appointment. We also offer appointments with the allied health team outside of regular clinic visits. It may also be helpful to schedule additional clinics at busier times of the year, which we have found to be in late December, April/May and late August, when university attenders are home for the holidays. Finally, it is imperative that the psychosocial impacts of diabetes be addressed in emerging adults. Approximately 1 in 5 emerging adults with type 1 diabetes experience depressive symptoms, and those who experience problems with social support are more likely to develop depressive symptoms (35). Emerging adults also face a number of added stresses and strains (e.g. financial worries, loss of parents’ insurance coverage), and in our clinic, they can receive practical guidance from a social worker, who will also screen for depression (36).
Although adolescent-parent relationships persist into emerging adulthood (20), relatively little is known about the influence of persistent parental responsibility for diabetes care among emerging adults. However, 1 study did find that a high level of family support was the strongest predictor of self-care in individuals aged 18 to 25 years with type 1 diabetes (21), and another study reported that a structured and organized family climate was associated with optimal glycemic control in emerging adults with type 1 diabetes (22). Intuitively, if individuals’ reliance on parental support persists into emerging adulthood, then the principles governing the impact of “shared self-management” are likely to be broadly similar to those influencing diabetes care during adolescence. In contrast to the emerging adult population, parental involvement in diabetes management during childhood and adolescence has generally been well studied (23–25). Parental involvement can have both positive and negative effects on diabetes outcomes for youth (26), and their influence appears to be tied to both the quantity and the quality of the involvement (27). Empathetic, collaborative relationships between parents and adolescents can have positive impacts on adherence and metabolic control (27,28). Conversely, intrusive or neglectful relationships or those that are perceived that way by adolescents can have detrimental effects (27,29,30). For instance, in 1 study that included 117 emerging adults with type 1 diabetes, supportive relationships with parents predicted better diabetes selfmanagement, whereas those who perceived their parents as being controlling experienced more depressive symptoms (31). The effects on parental welfare should also be appreciated. Greater parental responsibility has been linked to higher levels of “caregiver strain” (32), which can increase the likelihood of anxiety/depressive symptoms in the parents (33) and this, is turn, can adversely influence glycemic control in the adolescents (34). Practical considerations As we have already suggested, there are few recommendations for the management of emerging adults with diabetes that are supported by high-quality evidence and none that relate to the involvement of parents or other members of individuals’ support networks. The hints and tips that follow come from our own experience in our Young Adult Diabetes Clinic over the past 4 years. In terms of interactions with the parents of emerging adults with diabetes, we try to be flexible, according to the desires of the emerging adults. If they do attend clinic visits, some parents wait in the waiting room,
Future Directions There is a dearth of literature describing the needs of emerging adults with diabetes and the nature and impact of parental involvement in their diabetes care. This could be addressed best through a qualitative research approach employing narrative methodology and involving patients, healthcare providers and significant members of patients’ support networks, including, but not limited to, their parents. Indeed, the influence of other relationships
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should also be considered, including those with siblings and friends/ roommates as well as romantic relationships. What is more, the nature and significance of these relationships are likely to evolve over the emerging-adult years. The people who are providing social support to emerging adults with diabetes are likely to be quite different for persons at the age of 18 years and for persons in their late 20s. It is also important to consider the impact that being a caregiver has on people who provide this social support, who may be providing much of the structure around diabetes self-management but who may be overlooked by the conventional adult healthcare system. At the root of the ongoing involvement of parents (or other caregivers) in the “self-management” of emerging adults with diabetes may lie a disconnect between the responsibility expected by the adult service and an incomplete development of executive function in the persons with diabetes. The term executive function refers to the higher-level cognitive processes that organize the lower level cognitive functions required to achieve desired goals (37,38). Selfregulation is influenced by 2 primary domains of executive function: 1) the ability to plan, initiate and execute tasks and 2) the ability to inhibit, adjust and control emotional responses (39,40). Executive function is associated with diabetes self-management skills in younger individuals (41–43) and continues to significantly impact behaviour into emerging adulthood (44). However, it does not reach its peak until individuals’ mid-20s (45). It is likely that the selfmanagement expectations of adult diabetes services exceed the executive function capabilities of some emerging adults and that this gap is being bridged by parents or other members of the support network. However, there is a paucity of literature on this topic in emerging adults. Characterization of the role of executive function in diabetes self-management in emerging adults may inform the structuring of diabetes services and, indeed, may shed light on when the involvement of parents in diabetes care may be most beneficial (or even detrimental).
Conclusions As will always be the case, there are many 18-year-olds who are well equipped with the skills to manage their diabetes successfully and to navigate a sometimes complex healthcare system. The autonomy of these individuals should be fostered and encouraged. However, there are many other people in their late teens and early 20s who continue to rely upon the support of the family unit and to value that support. As stated in a recent poll of 1029 people 18 to 29 years old, “most young people still want their parents’ guidance and support as they navigate their way toward adulthood” (46). In the context of the modest effects seen in most practice interventions and the dangers imposed by therapeutic inertia, adult healthcare providers may wish to direct their attention to changing patterns in societal roles and expectations. Providers should recognize and accept that, even after legal adulthood, there are aspects of some individuals’ self-management that remain the de facto responsibility of their parents or other family members. These responsibilities could be direct (e.g. reminders to perform a capillary blood glucose test) or indirect (e.g. scheduling appointments and filling prescriptions); they may be advantageous or disabling; and they may impact both the patients and the caregivers. In the short term, parental control may promote better self-care. In the long term, whether this control ultimately impedes the acquisition of the necessary self-management skills required when parental influence is no longer present remains to be seen. A better understanding of the transitions taking place at home could improve adherence and outcomes where traditional interventions of healthcare transition have met with limited success.
Acknowledgements The authors thank Suela Cela, Jane Mason, Sandi Williams and the patients of the Young Adult Diabetes Clinic at St. Michael’s Hospital. This work was supported by a donation from the RDV Foundation.
Author Contributions BM, JAP and AA researched and wrote the article.
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