How do parents perceive their adolescent’s diabetes: a qualitative study
How Original do UK parents article perceive their adolescent’s diabetes?A. E. Carroll & D. G. Marrero Oxford, Diabetic DME Blackwell 0742-3071 23 Article Medicine Publishing Publishing, Ltd 2006
Aaron E. Carroll*† and David G. Marrero†‡
Abstract *Children’s Health Services Research, Indiana University School of Medicine, †The Regenstrief Institute for Health Care and ‡Diabetes Prevention and Control Center, Indiana University School of Medicine, Indianapolis, IN, USA Accepted 11 April 2006
Background/aims The developmental tasks of adolescence, combined with
physical changes, can interfere with self-management behaviour. Yet little is known about how parents view these challenges as they attempt to help their children cope with diabetes. Our objective was to understand how living with an adolescent with diabetes influences parents’ perceptions of their child’s well-being, their relationship with their child, and how they perceive the influence of peers and school on their child’s diabetes. Methods Twenty-eight parents of adolescents with Type 1 diabetes, aged
13–18 years, participated in focus groups. Transcripts were analysed using qualitative methods to determine dominant themes and incidence density. Results Themes included how diabetes negatively influences their adolescent’s lifestyle, how diabetes makes it difficult for parents to understand developmental challenges experienced by their child, concerns regarding the potential to develop long-term complications, perceptions on how diabetes impacts on their relationship with their child and relationships with peers and how their children’s school impacts on their diabetes self-management Conclusions This qualitative focus group study provides insight into parental perceptions of adolescents living with Type 1 diabetes, specifically as it relates to lifestyle implications, relationships with parents, peers and physicians, and school experiences.
Diabet. Med. 23, 1222–1224 (2006) Keywords adolescents, focus groups, parents, qualitative methods, Type 1
diabetes
Introduction During adolescence, teenagers test boundaries, challenge parental norms and respond to peer influence. The addition of diabetes can impact upon parents who are trying to navigate through this developmental phase. Few studies have investigated how diabetes influences parents’ perceptions of their child’s well-being, or the quality of parent–child relations. Even less is known about parental perception of peer influence, or the perceived impact of the school environment on their child’s diabetes self-management [1]. To illuminate these
Correspondence to: Aaron E. Carroll, MD, MS, Riley Research 330, 699 West Drive, Indianapolis, IN 46074, USA. E-mail:
[email protected]
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issues, we conducted focus groups with the parents of youths aged 13 –18 years.
Methods Twenty-eight parents of adolescents with Type 1 diabetes between the ages of 13–18 years were recruited to participate in one of five focus group sessions. The groups were organized by the age of their children: 13 –14, 15–16 and 17–18 years. The purpose of these focus groups was to gather information regarding parents’ perceptions of how diabetes affected their child’s development, family functioning and relationships with peers and physicians, as well as how it might impact on their experiences at school. A prepared set of open-ended qualitative questions were used to solicit responses during a 2-h session. Qualitative analysis of transcripts identified themes and incidence
© 2006 The Authors. Journal compilation © 2006 Diabetes UK. Diabetic Medicine, 23, 1222–1224
Original article
Table 1 Demographic data on focus group participants
Gender Female Male Child’s age (years) 13–14 15–16 17–18 Ethnicity White African-American Employment status Working Not working Child’s duration of diabetes (years) 0–3 3–6 6–9 10 or more
Parents (n = 28)
%
23 5
82 18
15 8 5
54 28 18
26 2
93 7
19 9
68 32
6 11 3 8
21 39 11 29
density, with the group rather than the individual serving as the unit of analysis.
Results The five focus groups involved 28 parents (Table 1). There were 23 women and five men. Their children were between 13 and 18 years of age (mean 14.7 years) and had diabetes for between 6 months and 14 years (mean 6.6 years). The mean HbA1c of their children was 8.7%. Parents only attended one group session. A consistent theme was that diabetes exerts a negative impact on their children’s development, prohibiting them from ‘just being a kid’ and requiring them to accept enormous responsibility at too young an age. Parents in all groups felt that having diabetes added burdens to their children’s lives that their peers did not have to experience, notably impacting on the ‘spontaneous nature of teenagers.’ Parents discussed how their adolescents cannot safely respond to whims or impulses. An interesting corollary of this loss of spontaneity was the view that having diabetes may have promoted a degree of maturity earlier than is the norm. Many parents expressed concern that their children did not consider long-term complications of diabetes and were worried about potential complications that result from a lack of compliance with therapeutic regimens. Many parents noted that compliance with testing, watching what was being eaten and even the use of insulin were more difficult during the teenage years. They described difficulty in getting their teenagers to stop what they are doing to test when they are with friends. Many of the participants were worried about how present behaviour will affect future outcomes, yet noted that attempts to regulate their child’s self-management often
© 2006 The Authors. Journal compilation © 2006 Diabetes UK. Diabetic Medicine, 23, 1222–1224
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resulted in rebelliousness which further exacerbated their concerns. Parents noted that, as their children grow older, it becomes more difficult to determine when to step in vs. when to give up control of the management of diabetes. As the adolescents neared adulthood, most parents felt the need to relinquish some control of managing diabetes to their children. They expressed frustration at the burden that adolescent behaviour and mood swings placed on them, and they admitted to feeling that they are confronting their teenagers constantly. Many felt they were constantly ‘nagging’ children about testing because they were worried about irreversible damage occurring to their children’s bodies. The positive and negative aspects of peer relationships also emerged as a central theme. Many of the parents felt that their children made attempts to hide their disease, especially the testing and injections, so that they did not appear to be different in any way. There was a strong consensus that the teenagers did not want to draw attention to themselves. While the fear of being different or the desire to hide the diabetes was noted by several of the parents, it was not a universal theme: some parents indicated that their children were very open about their diabetes and drew support from peers and others. The impact of the school environment on their children’s self-management was also a central theme. Parents noted that because of their diabetes their children had more difficulties with school, especially with respect to the lack of knowledge about diabetes that they encountered in teachers, coaches and administrators. Diabetes was also felt to impact negatively on their child’s performance in school as a result of blood glucose fluctuations. Parents repeatedly relayed stories of misconceptions regarding diabetes management by school personnel; there was concern that decisions made by teachers, coaches and principals could impact negatively on not only self-esteem and grades, but actual physical health.
Discussion Previous research has documented parental concerns about the negative influence of chronic conditions such as blindness and cerebral palsy on social and emotional development [2–5]. Diabetes, however, is unique among chronic illnesses in that is requires a larger degree of self-management by the patient, and the threat that poor self-management can be both acute and serious in their health impact. Parents in our focus groups indicated awareness of and concern over this issue and noted that this often translated into stressed interactions between themselves and their child, as the parents tried to enforce self-management behaviour. Diabetes clearly impacts upon the social development of children and family dynamics [6] and previous research has demonstrated that diabetes can be a crucible for family problems, enmeshment and dysfunctional behaviour [7]. The negative impact of diabetes on parent–child functioning was a central theme in all of the focus groups.
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How do parents perceive their adolescent’s diabetes? • A. E. Carroll & D. G. Marrero
We can only speculate why such tensions exist. It is possible that parent–child conflict regarding diabetes self-management is a by-product of health-care providers’ efforts to persuade adolescents to accept more instruction from others precisely at a time when developmentally the norm is to reject parental control and identify more with peers. This transition carries the threat of inappropriate self-management in an effort to appear as ‘one of the gang.’ Parents in our study certainly saw evidence of this phenomenon and justifiably had considerable anxiety about their child’s future well-being. Many expressed considerable tension as their concerns confronted their understanding of the developmental demands of their children. Parents were aware that this caused them to sometimes react to their child’s self-management in counterproductive ways. There was clearly tension between the desire to ‘let go and trust’ that the adolescents would be responsible and the need to ‘just be sure’ that they are, in fact, managing their diabetic regimen. Parents commented that they never wanted to have to acknowledge, as their children became adults, that they were physically not as healthy as possible because they had not performed their parental duties diligently. The transfer of management to their children could not absolve them of their feelings of responsibility. They were often caught in what many felt was an impossible situation: letting go of some things while tightening their grip on others. Our data also suggest that clinicians should pay closer attention to school and other environments that parents cannot control. There are several limitations to this study that warrant consideration. Some include the focus group methodology itself: small convenience samples limit the generalizability of the findings; group consensus may inhibit an individual from stating his/her differing opinion; introverted individuals may be more apt to keep silent about their opinions. This is not meant to be a representative sample of the population of parents of adolescents with diabetes. We had an obvious gender ‘bias’ in that most of the participants were mothers. Fathers may have a different view that was not adequately expressed. Parents reported a wide range of the quality of control of their children’s diabetes, from ‘excellent’ to ‘terrible.’ There was also a wide range in the time since diagnosis, a factor known to have a significant impact on management, related to at least physiology (‘honeymoon’) and motivation (‘burnout’). This particular study does not address perceptions of the adolescents themselves, their peers or physicians about the relationships with the diabetic adolescents. However, a second article does examine the perceptions of adolescents with diabetes [8]. This is necessary to provide corroboration with the parental perceptions of living with diabetes. This qualitative focus group study provides insight into parental perceptions of adolescents living with Type 1 diabetes, specifically as it relates to lifestyle implications, relationships
with parents, peers and physicians, and school experiences. Our findings suggest that we need to help parents to assume appropriate roles in the management of their adolescent children with diabetes. In doing so, we must recognize that they will always want to equip their children to manage their care as an adult. We can aid parents by helping them to navigate the fine line between helping their children and nagging them. We can seek to create interventions and practices that defuse the situation and relieve parents of their concerns and remaining feelings of ‘too much responsibility’. While we will never completely remove this responsibility, we can help them to let go and negotiate reasonable agreements between them and their growing children. Acknowledgements
We would like to thank the adolescents, their parents and the physicians’ offices that referred them to our study. We are especially grateful to the adolescents who were willing to share with us their experiences of having diabetes so that we can better understand and provide care for them. We also want to thank Terri Matousek of Matousek and Associates for conducting all of the focus groups and Heather Herdman RN PhD for her assistance with data analysis. This research was funded by grants from the NIH to AEC (1 K23 DK067879-01) and from Clarian Health Partners to AEC (VFR-190).
Competing interests None declared.
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© 2006 The Authors. Journal compilation © 2006 Diabetes UK. Diabetic Medicine, 23, 1222–1224
