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Adolescents' Perceptions of Parental Roles and Involvement in Diabetes Management
Adolescents’ Perceptions of Parental Roles and Involvement in Diabetes Management Barbara J. Leonard, RN, PhD, FAAN Ann Garwick, RN, PhD, FAAN Jehad Z. Adwan, RN, MS
This descriptive qualitative study compared how 18 teens (aged 14–16 years) with higher (n = 11; HiA1c) versus those with lower (n = 7; LoA1c) hemoglobin (Hb) A1c levels who met the standard of care viewed parental roles and involvement in diabetes management. Content analysis of the verbatim interview transcripts yielded five major themes. Teens in the LoA1c group (average HbA1c levels V8%) described their parents’ monitoring roles more positively, whereas teens in the HiA1c group (average HbA1c levels N8%) were annoyed with reminders and described more conflict with their parents related to lack of adherence to their diabetes protocol. Clinicians need to assess the quality of parent–teen relationships and provide developmentally appropriate interventions to help teens and their parents effectively negotiate role transitions related to diabetes management during middle adolescence. n 2005 Published by Elsevier Inc.
N MODERN WESTERN cultures, adolescence is an extended period of transition providing time for teens to move from dependence on their parents to greater independence in meeting their own needs — emotional, physical, social, and financial. Physical growth and normative psychological conflicts and crises emerge in adolescence (Friedman, Connelly, Miller, & Williams, 1998). Adolescents are challenged to gain more independence and autonomy from parents and other older family members. Families also face challenges with regard to structure, roles, and relationships. The main task for families in this stage is to pave the way for adolescents to assume more responsibility and independence. This stage of family development focuses on the process of letting go (Friedman et al., 1998) where a balance between freedom and responsibility needs to be achieved as parents deal with a developing individual. Renegotiation of roles is a significant developmental task for teens and parents alike during adolescence. For youth with Type 1 diabetes, changes in the management plan via parent and teen roles and responsibilities must begin early in this transition period as a teen is away from direct parental supervision for much of the day at school, participating in sports and other after-school activities as well as spending time with friends.
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During the time away from home, a teen must make many decisions about his or her diabetes care such as insulin dosing, glucose monitoring, diet, and exercise. The necessary process of transferring the primary responsibility of diabetes care from parents to adolescents carries with it the potential of distress for both parties. In their examination of parental involvement in diabetes management, Hanna and Guthrie (2000) found issues of loss of control, authority, and supervision to be barriers to decision making for parents regarding adolescents’ assuming diabetes management. In a previous study, Leonard, Jang, Savik, Plumbo, and Christensen (2002) suggested that adolescents who self-identified as having attention problems and delinquent and aggressive behavior and who saw their family lacking in emotional involvement and
From the School of Nursing, University of Minnesota, Minneapolis, MN. Address correspondence and reprint requests to Barbara J. Leonard, RN, PhD, FAAN, School of Nursing, University of Minnesota, 6-101 Weaver–Densford Hall, 308 Harvard St. SE, Minneapolis, MN 55455. E-mail: [email protected] 0882-5963/$ - see front matter n 2005 Published by Elsevier Inc. doi:10.1016/j.pedn.2005.03.010
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responsiveness were two times more likely to have poorer metabolic control than those who did not. This was true although their scores on the Youth Self-Report scale and the Family Assessment Device were almost all within normal limits. Even subtle increases in negative behaviors and perception of family dysfunction separated the adolescents with poorer control from those with better metabolic control (Leonard et al., 2002). These quantitative measures, however, could not explain the dynamics influencing the perturbations in these young people or why the teens viewed their families as dysfunctional. Although there is substantial literature on family contributions to the health of youth with Type 1 diabetes from parents’ point of view, there is relatively little research on teens’ perceptions of family roles and parental involvement in diabetes management during middle adolescence. Understanding parental involvement in diabetes management from the teens’ point of view is important because parental involvement has been associated with better outcomes among adolescents with Type 1 diabetes. Wysocki et al. (1996) investigated selfcare autonomy among adolescents with diabetes and concluded that parental involvement was related to better outcomes. However, the authors did not provide information babout the precise nature of that involvement, the characteristics of families who demonstrate it, or the role of clinical and educational practices in its cultivationQ (Wysocki et al., 1996, p. 123). Similarly, Anderson, Auslander, Jung, Miller, and Santiago (1990) found that conflicts between mothers and children regarding who assumed responsibility for diabetes management and adherence levels were significant predictors of hemoglobin (Hb) A1c levels. Anderson, Ho, Brackett, and Laffel (1999) admonished clinicians not to assume that mothers and children communicate about diabetes management or about changes in expectations over time. In a recent qualitative study of parents of adolescent girls with diabetes, Mellin, Neumark-Sztainer, and Patterson (2004) found that parents were challenged in trying to account for all the factors affecting blood glucose and knowing what aspect of the regimen to adjust and how best to do it. Parents also spoke about their teen’s complicated and busy life away from home and the difficulties this posed for diabetes management. Because family roles must be renegotiated during adolescence, both parents and adolescents share a time of instability. Most families over-
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come this transition confusion and give their teenaged children more autonomy and independence (Preto, 1989). This normal transition may be more complicated for families with an adolescent with Type 1 diabetes. Adolescents have a need for autonomy, and this need may compete with parental concern for adherence to a medical regimen. Parents’ concern over their child’s wellbeing and health, along with adolescents’ simultaneous drive for autonomy, triggers functional shifts and role revision within families (Preto, 1989). In their focus group study of adolescent– parent diabetes management-related conflict and support, Weinger, O’Donnell, and Ritholz (2001) found that parents were concerned about their adolescent’s long-term well being whereas adolescents were concerned about their present situation, which created a source of conflict between the parents and adolescents. In another study, Hanna, Juarez, Lenss, and Guthrie (2003) found that parental support increased from early to middle adolescence but decreased from middle to late adolescence. Perhaps this change reflects the normal transfer of responsibility for diabetes management from parents to teens from early to late adolescence. Dashiff (2003) examined the perceptions among adolescents and parents of their respective diabetes management responsibilities and concluded that there were significant differences in how fathers and mothers perceived each other’s as well as their adolescent’s diabetes management responsibilities. Mothers and adolescents did not differ in their views of the adolescent’s role; however, they showed significant differences in how they perceived the mother’s and father’s responsibilities. Finally, the adolescents and the fathers did not differ in the perceptions of the father’s role, but they differed in their views of the teen’s and mother’s responsibilities. These findings suggest a need to further investigate teens’ views of both parents’ roles in diabetes management during adolescence. This study addresses a gap in the literature by investigating how teens between the ages of 14 and 16 years view their parents’ roles and involvement in diabetes management. Our aim is to compare findings between teens who meet the current American Diabetes Association standard of care of HbA1c levels V 8% and those who do not to inform clinicians on how to tailor their interventions for families of adolescents who face different management challenges.
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METHODOLOGY Data for this article were drawn from the Lived Experience of Adolescents with Type I Diabetes study (Leonard, principal investigator [PI]). The original qualitative descriptive study was designed to examine how teens aged between 14 and 16 years with Type 1 diabetes view life with this condition during middle adolescence. This article focuses on the following research question: bHow do teens with higher versus lower HbA1c levels view their parents’ involvement in diabetes management and the quality of their relationships with their parents? Q
Participants Participants in this study were recruited from a pediatric endocrinology service in a large tertiary medical center in the midwest. The service granted the investigators permission to review the clinic lists each week for individuals who fit the study criteria. Participants were also recruited through direct contact with a group of teenagers with diabetes mellitus who were invited by the service to attend a seminar on insulin pumps with their parents. Inclusion criteria included adolescents (a) with a diagnosis of Type 1 diabetes; (b) aged between 14 and 16 years; (c) who spoke English; and (d) who had no other major medical condition. A member of the research team called eligible participants shortly before their scheduled clinic appointments to introduce the study. The participants agreed in advance to be interviewed at their next clinic appointment. A member of the research team subsequently met each eligible participant in the clinic where he or she reviewed the study and informed consent process with the teen and his or her parents. Assent forms were given to the adolescents and consent forms to the parents. Once permission to participate in the study was gained from both an adolescent and his or her parents, the investigator arranged to meet the teen after the clinic appointment. The 18 study participants were all Caucasian adolescents who lived in single- or two-parent households at the time of the interview. Most participants (n = 13) in both groups were using insulin pumps. The participants represent all the available adolescents from the pediatric endocrine clinic who met the eligibility criteria during the 12 months data were being collected. None of the eligible individuals refused to be interviewed.
Approval from the University of Minnesota’s Institutional Review Board included permission to review the participants’ medical records to determine their average HbA1c during the 12 months before the interview. The investigator collected the available records of HbA1c levels and calculated averages for each participant. For the analysis in this article, teens were assigned to one of two groups based on their average HbA1c levels. Using the current standard of care of HbA1c levels V 8 for adolescents, participants with better metabolic control (average HbA1c levels V 8%) were included in the low (Lo) A1c group and participants with poorer metabolic control (average HbA1c levels N 8%) were included in the high (Hi) A1c group. Table 1 presents a description of demographic characteristics by group.
Interviews Three interviewers collected the data from study participants; however, most of the interviews were conducted by the third author. Project interviewers included the PI and two doctoral nursing students (one man and one woman) who had completed a qualitative research course. Interviewer training included a review of the study’s purpose and how the interviews were to be conducted. The PI also conducted a demonstration interview with the interviewers. All interviewers used an interview guide that included core open-ended questions about living with diabetes and suggested probe questions. To avoid bias, the interviewers were blinded to each participant’s average HbA1c level at the time of the interview. This article focuses on participants’ responses to questions about their relationships with their parents and their involvement in diabetes management. Interview questions included bHow would you describe your relationship with your parents?Q and bHow would you describe your Table 1. Demographic Description of Participants Demographic Characteristics
LoA1c Group
Number of participants Women Men Age range (years) Average age (years) Uses insulin pump Lives in two-parent family Lives in single-parent family A1c range Average A1c Family size range
7 5 2 14 –16 14.7 5 6 1 6.9 – 8 7.7 3–7
HiA1c Group
11 8 3 14 –16 15.1 8 8 3 9 –11.3 9.6 3–6
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parents’ involvement in diabetes care? Q Probes included bWho is more involved in your care, and in what ways?Q; bWhat kind of diabetes management tasks do your parents perform?Q; and bHow has your parents’ involvement changed since you were first diagnosed? Q Individual interviews with adolescents were conducted immediately after each teen’s clinic visit in a comfortable private room in the medical center complex away from the clinic area or in the participant’s home if the parents or participant could not wait for the interview to be completed after the clinic appointment. Interviews in participants’ homes took place within 1 week of the clinic appointment. Thirteen interviews were conducted in the clinic setting and five in home settings. When the interviews were completed, participants received $15.00. All interviews were audiotaped and subsequently transcribed verbatim. ANALYSIS Qualitative content analytic methods (DowneWamboldt, 1992; Neuendorf, 2002) were used to identify and then compare how teens in the HiA1c group versus those in the LoA1c group described their relationships with their parents and family as well as their parents’ involvement with diabetes management. First, the investigators divided the interviews into two sets based on the teens’ mean HbA1c level and read and reread the verbatim transcripts within and across each set in their entirety to identify patterns within the context of the interviews as a whole. Next, two of the investigators independently reviewed the verbatim transcripts and identified major categories related to parental roles, parent –teen and teen –family relationships, and parents’ involvement with diabetes management. Then, the investigators met together and used a consensual process to develop initial coding categories that were organized into a preliminary coding template (Crabtree & Miller, 1999). Using this preliminary coding scheme, one of the investigators systematically coded each of the interviews on a line-by-line basis to ensure that topics were not missed. Next, the investigators reviewed the findings and identified five common themes. After the identification of themes, the investigators used cross-comparative strategies to identify similarities and differences in the ways that participants in the HiA1c group versus those in the LoA1c group talked about specific themes. To aid this comparison, a summary data display table
(Miles & Huberman, 1994) listing key quotes by participant ID number and group was constructed for each theme. A variety of strategies were used to establish trustworthiness and rigor in this study (Lincoln & Guba, 1985; Sandelowski, 1993). The investigators drew on their rich clinical expertise in working with adolescents with diabetes and their families to develop the interview guide and interpret the data. Before the analysis, the transcripts were checked against the recordings to ensure that interviews were accurately transcribed verbatim. The audit trail (consisting of audiotaped interviews, verbatim transcripts, data analysis notes, the coding template, analytic memos, and data tables) was reviewed and critiqued by the qualitative research consultant who also has clinical and research expertise in working with youth with chronic conditions. The qualitative consultant independently coded one fourth of the transcripts using the coding template to validate this coding scheme and reviewed all the audiotaped interviews to verify that the findings were interpreted appropriately within the context of the interviews. FINDINGS Five themes emerged from the qualitative analysis of adolescents’ stories about parental roles and involvement in managing diabetes. The five themes include the following: (a) gaining freedom and responsibility for diabetes management; (b) feeling bothered by parental reminders to manage their diabetes; (c) closeness of family and parental relationships; (d) parental involvement in diabetes management monitoring; and (e) parent–teen conflict related to diabetes. Similarities and differences in how teens in the HiA1c group (HbA1c = mean N8%) versus those in the LoA1c group (HbA1c = mean V8%) talked about each of these themes are described.
Gaining Freedom and Responsibility for Diabetes Management More teens in the LoA1c group than in the HiA1c group talked about gaining freedom and responsibility for their diabetes management and were more positive about assuming responsibility for managing their diabetes. For example, one teen noted that her ability to manage her diabetes helped her be independent away from home: I’m not at home a lot. I’m one of those people that can’t sit at home. I’m always doing something. And so. . .I took
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charge. . .probably about 8th grade. I finally started to take over on my own.
This teen contrasted her current independence with how she comanaged her condition with her mother when she was younger: My mom would help me. We’d decide together how much I was going to do. Or I’d ask her. Now, she’s not even home half the time when I eat.
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Feeling Bothered by Parental Reminders to Manage Their Diabetes This theme was emphasized more by the teens in the HiA1c group who also had a more negative view of their parents’ reminders than the teens in the LoA1c group. Only two teens in the LoA1c group talked about being aware and sometimes annoyed by reminders.
Several teens in the LoA1c group described gaining freedom and responsibility but noted that their parents continued to keep track of their metabolic control.
Sometimes my Mom just bothers me and bothers me. . .She always makes me count what I eat. I know how to do it; I just am really lazy about that. . .So she picks on me about that.
They let me go out and do things by myself and everything, but they always ask me what my blood sugars have been every day.
Another teen in the LoA1c group noted that parental reminders decreased in frequency and intensity as she grew older and assumed more responsibility:
In contrast, fewer teens in the HiA1c group talked about gaining freedom; those who did mentioned difficulties that they were experiencing in managing their diabetes. For example, one teen who was having difficulty managing her diabetes was also aware that her mother’s involvement would need to change when she went to college: My Mom is learning to let go because in a couple years. . .she’s going to have to let go all together. So she’s just kind of letting go more and more all the time and kind of giving me more responsibility.
Several of the teens in the HiA 1c group described skipping blood glucose monitoring, insulin, or meals on occasion. It is interesting to note that they were aware of the consequences of not following their treatment protocol and their parents’ frustration, but this awareness did not motivate them to assume more responsibility. As one teen said, I think they [my parents] did [let go]. Just. . .because they were sick of it. . .They wanted me to start doing my own blood sugars. dCome on, you can do it.T But, I started sort of skipping out on my blood sugars a lot. They had to remind me [to test my blood].
Another teen pointed out that his father wanted him to assume more responsibility: My Dad wants me to start. . .picking it up now because he can’t always get it at the time I need it.
Overall, the teens in the LoA1c group seemed more comfortable and pleased with assuming more responsibility for their diabetes than the teens in the HiA1c group who were struggling with higher HbA1c levels and difficulties managing their diabetes.
When I was younger, they’d always bug me about drawing up my insulin and doing all this stuff. But now they. . .lost a little bit with the pressure.
The adolescent counterparts in the HiA1c group were more upset and irritated by parental reminders. It is important to note that these teens also described skipping shots and glucose testing. One adolescent reported, I wish my Mom would not bug me so much about everything. . .like doing my tests and my insulin. I wish she’d kind of let go of that too and give me more of my responsibilities of that. And sometimes she makes me mad when she has to continually tell me [what] to do.
Another teen who was not adhering to his treatment regimen said, I’d go out with some friends and like wouldn’t bring my medicine, my insulin and stuff. . .I’ve been yelled at too many times by my mom.
Another teen thought that his parents reminded him more when they were upset about other issues: Usually they do [trust me] but if they’re having a bad day. . .it kind of goes downhill. And they start annoying me more saying, dTest your blood. Test your blood. Test your blood.T
Another teen in the HiA1c group noted that his parents followed up when reminders did not work: I would also just tell my parents that I did my blood sugar and make up a number. And they believed me, but they’d go check and see that I actually didn’t. So, my Mom held my blood sugar machine downstairs and watched me — made me come and do it.
Teens in the HiA1c group tended to ignore parental reminders rather than use reminders to improve their diabetes management.
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Closeness of Family and Parental Relationships More teens in the LoA1c group than in the HiA1c group talked about how supportive their families were to them. One of the teens in the LoA1c group noted how diabetes brought his family closer together by saying, We all sit down at the table. . .and right before we eat we check my blood sugar and then we’ll discuss [how] my numbers have been good for the past week. And we all do it as a family thing instead of. . .by myself. It’s easier.
Another boy in the LoA1c group said, We all have a pretty good relationship. . .We don’t have a whole lot of time together but. . .when we are together; there usually isn’t any fighting.
Although some adolescents felt closer to their families after their diabetes diagnosis, others did not think that the relationship had changed because of diabetes. As one teen in the LoA1c group said, I don’t think it’s much changed. It’s probably been the same relationship as we had before, but they [parents] just worry a little bit more.
In terms of managing their diabetes, teens in both groups tended to rely more on mothers for helping them manage their diabetes. As a result, several teens talked about close relationships with their mothers. As one teen in the HiA1c group said, She [mom] always says that if she could take my place, she would. She’d rather have diabetes than me. I think it made me and my Mom closer in a way because she got more involved.
Similarly, a teen in the LoA1c group said, I am close to my Mom. He [dad] wouldn’t know what to do if I got into a situation where I needed to go to the hospital. . .that’s why I’d rather be with my Mom in that situation.
Teens’ views of their fathers’ involvement in diabetes were more variable. Some fathers were described as being very involved and knowledgeable about diabetes and its management from the time of diagnosis whereas others were not. For example, one teen in the HiA1c group said that he relied more on his father than his mother for advice: I take advice from my Dad, because we’re the same almost. And it’s just easier to take some advice from somebody that you relate with.
In contrast, another teen said,
My Dad’s never really been involved much. I think he just puts it off. But that’s OK because my Mom’s mostly done all the work [related to diabetes].
Teens in both groups talked about relying on one or both parents to help them with their diabetes management.
Parental Monitoring of Diabetes Most teens in both groups were aware that their parents were actively monitoring their diabetes management but noted that it was less frequent and intense than when they were younger. A few participants in both groups described their parents’ expectations that they follow their treatment regimen. Teens in the LoA1c group tended to describe their parents’ monitoring roles in positive ways that reflected their awareness of their parents’ commitment to helping them manage their diabetes. One of the boys in the LoA1c group put it this way, They’re always there reminding me to do everything. They always know everything. . .everything that I do. They have to know all. . .every single blood sugar.
Another teen described it this way, Well, my Mom has more of a. . .hands on role. She always reminds me to check my blood. And she’s always asking. . .about my pump. Is my pump running low on insulin? Do I need to change my pump? She [mom] is as much into it almost as me.
In comparison, the teens in the HiA1c group focused on their parents’ close monitoring when they were skipping insulin injections, glucose monitoring, and meals and were away from home. Teens also noted that their parents were upset with their lack of compliance and high A1c levels. For example, one teen reported, My Dad asks me a lot about what my blood sugars are and stuff and how I’m doing with it. . .If my numbers are high, he’ll get mad at me.
One of the teens noted her concern about being totally responsible for her diabetes management in the future: It’s probably going to be kind of horrible. Because I think, as much as I hate to have to admit this, I think my parents do help me a lot with it. And if I had to just be on my own and not have them to remind me, you know, dDo you need insulin in a few days?T
Teen–Parent Conflict Related to Diabetes It is noteworthy that only participants in the HiA1c group described a high degree of conflict or
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disagreement with parents regarding their diabetes management. For three of the teens, this conflict was reflected in reports of their parents’ reactions to lack of adherence to the treatment plan. For example, one teen described a typical pattern of conflict between him and his mother: She yells at me all the time. dYou’re supposed to do your shots.T dOh, yeah. I know but I’m tired.T dYou’re supposed to test your blood.T dYeah, I know. But I did my shot already so there’s no sense in doing it.T
Another teen attributed her frequent arguments with her parents to her diabetes and low self-esteem: I don’t know it’s like hard to explain. I feel like [I have] a lot less self-esteem for myself and stuff like that because I’ve got diabetes. . .I get negative sometimes around my parents and get into arguments.
These teens’ difficulty managing and coping with diabetes contributed to frequent parent–teen conflicts. DISCUSSION The findings indicate that the participants were very aware of their parents’ involvement in helping them manage their diabetes. Overall, teens in both groups felt supported by their parents and talked about how they were assuming more responsibility for their own diabetes management. Teens often compared their parents’ current involvement with that when they were younger and noted that their parents now provided less direct care but were still involved in monitoring their diabetes management and providing assistance as needed. The emphasis that teens placed on parental support and changing roles is consistent with previous studies that have documented the importance of parental involvement in diabetes management (Wysocki et al., 1996). It is notable that the teens in the LoA1c group seemed to appreciate parental reminders to manage their diabetes whereas the teens in the HiA1c group tended to resent reminders. It is likely that parents of the teens in the LoA1c group needed to remind their teens less often than parents in the HiA1c group and that their reminders were more often associated with maintaining good control than addressing lack of adherence. For the teens in the HiA1c group, their reported lack of adherence and problems with metabolic control could, in turn, have heightened their emotional reactivity and influenced their negative views of parental reminders. Also, the teens in the HiA1c group and their parents might have felt more pressure to
achieve the standard of care and experienced more difficulties in reaching this standard for a variety of reasons. Although adherence to treatment is a critical factor in successful outcomes, it is not the only factor. Physiological factors, exacerbated by hormonal fluctuation and stress in puberty, can also contribute to poorer metabolic control in teens with diabetes. The findings strongly support the importance of the quality of the relationship between adolescents with diabetes and their parents as a critical factor in diabetes management. Teens’ stories provide further evidence that an emotionally close and supportive relationship with one’s parent(s) serves as a strong protective factor for teens with diabetes whereas persistent parent–teen conflict related to diabetes management is a risk factor associated with poor metabolic control (Patterson & Garwick, 1998; Weihs, Fischer, & Baird, 2002). Although the teens in the HiA1c group were aware of the importance of self-management and its importance to health outcomes, they chose to occasionally skip glucose testing, meals, and insulin injections, especially when they were away from home with friends or in new social situations. Our findings are consistent with those of Wysocki (1993), who found that family communication and conflict resolution skills were strong predictors of Type 1 diabetes outcome variables. Teens’ stories illustrate that diabetes management is inextricably interwoven with interpersonal factors and the social worlds of adolescents. It is important to note that the conflict reported by the teens in the HiA1c group focused on the teens’ lack of adherence to their treatment regimen. Teens acknowledged that their parents were aware of their lack of adherence and spontaneously described the various ways they tried to get them to adhere to their regimen. The findings reflect how participants viewed the impact of diabetes on themselves and their families and the complexity involved in managing diabetes during middle adolescence.
Clinical Implications Although there are many other factors that can influence metabolic control (e.g., important hormonal changes during early adolescence and relationships with siblings and peers), parental relationships and involvement are central. We suggest that clinicians periodically assess parent– adolescent relationships and roles in managing diabetes. Both parents and adolescents need to be
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interviewed to provide an accurate portrait of how diabetes is managed in the family context. Recurring parent – teen conflicts about diabetes management alert clinicians to work with teens and parents on strategies to improve diabetes management without disrupting the quality of parent – teen relationships. Like Mellin et al. (2004), we recommend that clinicians assess adolescent and parental concerns in clinic visits and work to keep parents informed and appropriately involved in diabetes management. Further assessment of the sources of conflict and barriers to adherence is needed to determine the issues and patterns that are triggering conflict and problems with adherence. For teens in this project, difficulty adhering to the treatment protocol was related to a wide variety of factors that ranged from being tired of having to manage diabetes to not wanting to be different from peers. The parent–teen conflict reported by the teens in the HiA1c group suggests that parents may have been frustrated with their teen’s high blood glucose levels and lack of adherence. These findings correspond to Mellin et al.’s study in which parents’ disapproval about how their daughters managed aspects of their diabetes was the most commonly identified source of parent – teen conflict related to diabetes management whereas teens’ annoyance with parental reminders was the second most common source of conflict. Both teens and parents could benefit from developmentally appropriate interventions that help them deal with the daily demands of diabetes within the context of the home and community environments. For example, Anderson et al. (1999) designed an intervention with teens and parents aimed at maintaining the parent–teen network in diabetes management while reducing diabetes-related conflict between the parents and adolescents. Compared with a control group that received standard clinic care, the teamwork group did not experience deterioration in the parent role either in insulin administration or in blood monitoring for glucose. They concluded that the parent role could be enhanced through this low-intensity office-based intervention especially because the program helped reduce diabetesrelated family conflicts. Persistent, unresolved parent teen conflict regarding diabetes management points to the need for more intensive interventions to help teens and their parents address risk-taking behaviors and manage diabetes in social situations. For example, Wysocki et al. (1997) found that the Behavioral Family Systems Therapy was more effective
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than standard diabetes education and support approaches in improving communication and problem-solving skills among families of adolescents with Type 1 diabetes. Teens need to learn how to manage their diabetes along with competing demands and interests whereas parents need specific information about their teen’s capabilities and how to address conflict and problems with adherence. The research by Knafl, Breitmayers, Gallo, and Soeller (1996) on family management styles and the process of normalization in families of children with chronic illness provides a useful framework for understanding how teens and their parents work together to manage diabetes within the sociocultural context of the family. Clinicians need to consider each family’s unique social world and cultural background as well as individual family members’ perspectives on managing diabetes as they work with teens and their parents. If clinicians find that unresolved conflict is negatively affecting parent – teen relationships, referral to mental health counselors may be appropriate. The finding that some teens did not think that their fathers understood diabetes or how to help them at times of crisis suggests the importance of including both mothers and fathers in diabetes education and providing periodic booster sessions that consider diabetes management within a developmental context. Although parents were not interviewed in this study, teens’ accounts suggest that parents might benefit from support from clinicians in their attempts to help their son or daughter manage diabetes and achieve good metabolic control. Several teens in the HiA1c group indicated awareness of their parents’ frustration and concern when they skipped aspects of their treatment protocol. These emotional reactions and conflict around diabetes management indicate the need for parental support either in groups with other parents of adolescents with diabetes or in counseling with their teenagers. In addition to the specific recommendations for individual teens and parents, we suggest that clinicians consider anticipatory interventions with parents of children with diabetes just as they are entering puberty. Interventions could take many forms such as individual or group education sessions for parents. Parents could consider the developmental needs of young adolescents and how these needs create change in parent – child relationships and who manages various aspects of the
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diabetes. Reading materials, films, and developmental experts could help parents prepare for these important developmental changes. Clinicians also need to consider the emotional support and guidance needed by parents who play such a pivotal role in helping the young person with diabetes. Likewise, adolescents with diabetes need emotional support and guidance from their providers. Clinicians can never lose sight of the daily struggle of diabetes care and how difficult it is to concurrently negotiate the developmental changes of adolescence. Interventions that go beyond standard clinic appointments to review HbA1c levels should also be considered for adolescents.
Research Implications This study raises the importance of parent– adolescent relationships in health outcomes in adolescents with diabetes. Further investigation of risk and protective factors in parent–teen relationships that influence diabetes management and metabolic control is needed. This study provides portraits of parent–adolescent relationships and diabetes management through the eyes of teens with diabetes. Studies about mothers’ and fathers’ experiences in raising adolescents with Type 1 diabetes are also needed. Understanding how parents feel about having an adolescent with diabetes, how they view their role in diabetes care, and how they see that role changing during
adolescence would be very informative in the development of interventions. It would also be helpful to learn what kind of clinical services teens and parents need from health-care providers during the adolescent years.
Conclusion Decades of research on child and adolescent development demonstrate the crucial roles that parents play in the lives of their children from prenatal life to young adulthood. This study underscores the importance of parents in the health outcomes of teens during middle adolescence. The teens relied on their parents for support and guidance in managing their diabetes. Having a supportive parent was critically important to the teens in this study. Parent–teen conflict was an indicator that teens were having difficulty following their diabetes protocol and that parents were bothered by the lack of adherence. We strongly suggest that the relationship between parents and teenagers with Type 1 diabetes be considered as a central component of health-care delivery. ACKNOWLEDGMENTS This study was supported in part by the Center for Nursing Education: Children with Special Health Needs, which is funded by the Maternal and Child Health Bureau (MCH-279184-01-0).
REFERENCES Anderson, B. J., Auslander, W. F., Jung, K. C., Miller, J. P., & Santiago, J. V. (1990). Assessing family sharing of diabetes responsibilities. Journal of Pediatric Psychology, 15, 477 – 492. Anderson, B. J., Ho, J., Brackett, J., & Laffel, L. (1999). An office-based intervention to maintain parent–adolescent teamwork in diabetes management. Diabetes Care, 22, 713 – 721. Crabtree, B. F., & Miller, W. L. (1999). Using codebooks and code manuals: A template organizing style of interpretation. In B. F. Crabtree & W. L. Miller (Eds.), Doing qualitative research (2nd ed., pp. 163 – 178). Thousand Oaks, CA: Sage. Dashiff, C. (2003). Self- and dependent-care responsibility of adolescents with IDDM and their parents. Journal of Family Nursing, 9, 166 – 183. Downe-Wamboldt, B. (1992). Content analysis: Method, applications, and issues. Health Care for Women International, 13, 313 – 321. Friedman, M., Connelly, C., Miller, K., & Williams, R. (1998). Family developmental theory. In M. Friedman (Ed.), Family nursing: Research, theory, and practice (4th ed., pp. 111 – 152). Stamford, CT: Appleton & Lange. Hanna, K., & Guthrie, D. (2000). Parents’ perceived benefits and barriers of adolescents’ diabetes self-management:
Part 2. Issues in Comprehensive Pediatric Nursing, 23, 193 – 202. Hanna, K., Juarez, B., Lenss, S., & Guthrie, D. (2003). Parent– adolescent communication and support for diabetes management as reported by adolescents with type 1 diabetes. Issues in Comprehensive Pediatric Nursing, 26, 145 – 158. Knafl, K., Breitmayers, B., Gallo, A., & Soeller, L. (1996). Family response to childhood chronic illness: Description of management styles. Journal of Pediatric Nursing, 11, 315 – 326. Leonard, B., Jang, Y., Savik, K., Plumbo, P., & Christensen, R. (2002). Psychosocial factors associated with levels of metabolic control in youth with type 1 diabetes. Journal of Pediatric Nursing, 17, 28 – 37. Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage. Mellin, A. E., Neumark-Sztainer, D., & Patterson, J. M. (2004). Parenting adolescent girls with type I diabetes: Parents’ perspectives. Journal of Pediatric Psychology, 29, 221 – 230. Miles, M., & Huberman, M. (1994). Qualitative data analysis (2nd ed.). Thousand Oaks, CA: Sage. Neuendorf, K. A. (2002). The content analysis guidebook. Thousand Oaks, CA: Sage.
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Patterson, J., & Garwick, A. (1998). A family systems perspective on living with diabetes. In G. Werther & J. Court (Eds.), Diabetes and the adolescent (pp. 3 – 34). Melbourne, Australia: Miranova Publishing. Preto, N. (1989). Transformation of the family system in adolescence. In B. Carter & M. McGoldrick (Eds.), The changing family life cycle (2nd ed., pp. 255 – 283). New York: Gardner Press. Sandelowski, M. (1993). Rigor or rigor mortis: The problem of rigor in qualitative research revisited. Advances in Nursing Science, 16, 1 – 8. Weihs, K., Fisher, L., & Baird, M. (2002). Families, health and behavior: A section of the commissioned report by the Committee on Health and Behavior: Research, Practice, and Policy, Division of Neuroscience and Behavioral Health Division of Health Promotion and Disease Prevention, Institute of Medicine, National Academy of Sciences. Families, Systems, and Health, 20, 7 – 46.
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Weinger, K., O’Donnell, K. A., & Ritholz, M. (2001). Adolescent views of diabetes-related parent conflict and support: A focus group analysis. Journal of Adolescent Health, 29, 330 – 336. Wysocki, T. (1993). Associations among teen–parent relationships, metabolic control, and adjustment to diabetes in adolescents. Journal of Pediatric Psychology, 18, 441 – 452. Wysocki, T., Harris, M. A., Greco, P., Harvey, L. M., McDonnell, K., Danda, C. L. E., et al. (1997). Social validity of support group and behavior therapy interventions for families of adolescents with insulin-dependent diabetes mellitus. Journal of Pediatric Psychology, 22, 635 – 649. Wysocki, T., Taylor, A., Hough, B. S., Linscheif, T. R., Yeates, K. O., & Naglieri, J. A. (1996). Deviation from developmentally appropriate self-care autonomy. Diabetes Care, 19, 119 – 125.
This descriptive qualitative study compared how 18 teens (aged 14–16 years) with higher (n = 11; HiA1c) versus those with lower (n = 7; LoA1c) hemoglobin (Hb) A1c levels who met the standard of care viewed parental roles and involvement in diabetes management. Content analysis of the verbatim interview transcripts yielded five major themes. Teens in the LoA1c group (average HbA1c levels V8%) described their parents’ monitoring roles more positively, whereas teens in the HiA1c group (average HbA1c levels N8%) were annoyed with reminders and described more conflict with their parents related to lack of adherence to their diabetes protocol. Clinicians need to assess the quality of parent–teen relationships and provide developmentally appropriate interventions to help teens and their parents effectively negotiate role transitions related to diabetes management during middle adolescence. n 2005 Published by Elsevier Inc.
N MODERN WESTERN cultures, adolescence is an extended period of transition providing time for teens to move from dependence on their parents to greater independence in meeting their own needs — emotional, physical, social, and financial. Physical growth and normative psychological conflicts and crises emerge in adolescence (Friedman, Connelly, Miller, & Williams, 1998). Adolescents are challenged to gain more independence and autonomy from parents and other older family members. Families also face challenges with regard to structure, roles, and relationships. The main task for families in this stage is to pave the way for adolescents to assume more responsibility and independence. This stage of family development focuses on the process of letting go (Friedman et al., 1998) where a balance between freedom and responsibility needs to be achieved as parents deal with a developing individual. Renegotiation of roles is a significant developmental task for teens and parents alike during adolescence. For youth with Type 1 diabetes, changes in the management plan via parent and teen roles and responsibilities must begin early in this transition period as a teen is away from direct parental supervision for much of the day at school, participating in sports and other after-school activities as well as spending time with friends.
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During the time away from home, a teen must make many decisions about his or her diabetes care such as insulin dosing, glucose monitoring, diet, and exercise. The necessary process of transferring the primary responsibility of diabetes care from parents to adolescents carries with it the potential of distress for both parties. In their examination of parental involvement in diabetes management, Hanna and Guthrie (2000) found issues of loss of control, authority, and supervision to be barriers to decision making for parents regarding adolescents’ assuming diabetes management. In a previous study, Leonard, Jang, Savik, Plumbo, and Christensen (2002) suggested that adolescents who self-identified as having attention problems and delinquent and aggressive behavior and who saw their family lacking in emotional involvement and
From the School of Nursing, University of Minnesota, Minneapolis, MN. Address correspondence and reprint requests to Barbara J. Leonard, RN, PhD, FAAN, School of Nursing, University of Minnesota, 6-101 Weaver–Densford Hall, 308 Harvard St. SE, Minneapolis, MN 55455. E-mail: [email protected] 0882-5963/$ - see front matter n 2005 Published by Elsevier Inc. doi:10.1016/j.pedn.2005.03.010
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responsiveness were two times more likely to have poorer metabolic control than those who did not. This was true although their scores on the Youth Self-Report scale and the Family Assessment Device were almost all within normal limits. Even subtle increases in negative behaviors and perception of family dysfunction separated the adolescents with poorer control from those with better metabolic control (Leonard et al., 2002). These quantitative measures, however, could not explain the dynamics influencing the perturbations in these young people or why the teens viewed their families as dysfunctional. Although there is substantial literature on family contributions to the health of youth with Type 1 diabetes from parents’ point of view, there is relatively little research on teens’ perceptions of family roles and parental involvement in diabetes management during middle adolescence. Understanding parental involvement in diabetes management from the teens’ point of view is important because parental involvement has been associated with better outcomes among adolescents with Type 1 diabetes. Wysocki et al. (1996) investigated selfcare autonomy among adolescents with diabetes and concluded that parental involvement was related to better outcomes. However, the authors did not provide information babout the precise nature of that involvement, the characteristics of families who demonstrate it, or the role of clinical and educational practices in its cultivationQ (Wysocki et al., 1996, p. 123). Similarly, Anderson, Auslander, Jung, Miller, and Santiago (1990) found that conflicts between mothers and children regarding who assumed responsibility for diabetes management and adherence levels were significant predictors of hemoglobin (Hb) A1c levels. Anderson, Ho, Brackett, and Laffel (1999) admonished clinicians not to assume that mothers and children communicate about diabetes management or about changes in expectations over time. In a recent qualitative study of parents of adolescent girls with diabetes, Mellin, Neumark-Sztainer, and Patterson (2004) found that parents were challenged in trying to account for all the factors affecting blood glucose and knowing what aspect of the regimen to adjust and how best to do it. Parents also spoke about their teen’s complicated and busy life away from home and the difficulties this posed for diabetes management. Because family roles must be renegotiated during adolescence, both parents and adolescents share a time of instability. Most families over-
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come this transition confusion and give their teenaged children more autonomy and independence (Preto, 1989). This normal transition may be more complicated for families with an adolescent with Type 1 diabetes. Adolescents have a need for autonomy, and this need may compete with parental concern for adherence to a medical regimen. Parents’ concern over their child’s wellbeing and health, along with adolescents’ simultaneous drive for autonomy, triggers functional shifts and role revision within families (Preto, 1989). In their focus group study of adolescent– parent diabetes management-related conflict and support, Weinger, O’Donnell, and Ritholz (2001) found that parents were concerned about their adolescent’s long-term well being whereas adolescents were concerned about their present situation, which created a source of conflict between the parents and adolescents. In another study, Hanna, Juarez, Lenss, and Guthrie (2003) found that parental support increased from early to middle adolescence but decreased from middle to late adolescence. Perhaps this change reflects the normal transfer of responsibility for diabetes management from parents to teens from early to late adolescence. Dashiff (2003) examined the perceptions among adolescents and parents of their respective diabetes management responsibilities and concluded that there were significant differences in how fathers and mothers perceived each other’s as well as their adolescent’s diabetes management responsibilities. Mothers and adolescents did not differ in their views of the adolescent’s role; however, they showed significant differences in how they perceived the mother’s and father’s responsibilities. Finally, the adolescents and the fathers did not differ in the perceptions of the father’s role, but they differed in their views of the teen’s and mother’s responsibilities. These findings suggest a need to further investigate teens’ views of both parents’ roles in diabetes management during adolescence. This study addresses a gap in the literature by investigating how teens between the ages of 14 and 16 years view their parents’ roles and involvement in diabetes management. Our aim is to compare findings between teens who meet the current American Diabetes Association standard of care of HbA1c levels V 8% and those who do not to inform clinicians on how to tailor their interventions for families of adolescents who face different management challenges.
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METHODOLOGY Data for this article were drawn from the Lived Experience of Adolescents with Type I Diabetes study (Leonard, principal investigator [PI]). The original qualitative descriptive study was designed to examine how teens aged between 14 and 16 years with Type 1 diabetes view life with this condition during middle adolescence. This article focuses on the following research question: bHow do teens with higher versus lower HbA1c levels view their parents’ involvement in diabetes management and the quality of their relationships with their parents? Q
Participants Participants in this study were recruited from a pediatric endocrinology service in a large tertiary medical center in the midwest. The service granted the investigators permission to review the clinic lists each week for individuals who fit the study criteria. Participants were also recruited through direct contact with a group of teenagers with diabetes mellitus who were invited by the service to attend a seminar on insulin pumps with their parents. Inclusion criteria included adolescents (a) with a diagnosis of Type 1 diabetes; (b) aged between 14 and 16 years; (c) who spoke English; and (d) who had no other major medical condition. A member of the research team called eligible participants shortly before their scheduled clinic appointments to introduce the study. The participants agreed in advance to be interviewed at their next clinic appointment. A member of the research team subsequently met each eligible participant in the clinic where he or she reviewed the study and informed consent process with the teen and his or her parents. Assent forms were given to the adolescents and consent forms to the parents. Once permission to participate in the study was gained from both an adolescent and his or her parents, the investigator arranged to meet the teen after the clinic appointment. The 18 study participants were all Caucasian adolescents who lived in single- or two-parent households at the time of the interview. Most participants (n = 13) in both groups were using insulin pumps. The participants represent all the available adolescents from the pediatric endocrine clinic who met the eligibility criteria during the 12 months data were being collected. None of the eligible individuals refused to be interviewed.
Approval from the University of Minnesota’s Institutional Review Board included permission to review the participants’ medical records to determine their average HbA1c during the 12 months before the interview. The investigator collected the available records of HbA1c levels and calculated averages for each participant. For the analysis in this article, teens were assigned to one of two groups based on their average HbA1c levels. Using the current standard of care of HbA1c levels V 8 for adolescents, participants with better metabolic control (average HbA1c levels V 8%) were included in the low (Lo) A1c group and participants with poorer metabolic control (average HbA1c levels N 8%) were included in the high (Hi) A1c group. Table 1 presents a description of demographic characteristics by group.
Interviews Three interviewers collected the data from study participants; however, most of the interviews were conducted by the third author. Project interviewers included the PI and two doctoral nursing students (one man and one woman) who had completed a qualitative research course. Interviewer training included a review of the study’s purpose and how the interviews were to be conducted. The PI also conducted a demonstration interview with the interviewers. All interviewers used an interview guide that included core open-ended questions about living with diabetes and suggested probe questions. To avoid bias, the interviewers were blinded to each participant’s average HbA1c level at the time of the interview. This article focuses on participants’ responses to questions about their relationships with their parents and their involvement in diabetes management. Interview questions included bHow would you describe your relationship with your parents?Q and bHow would you describe your Table 1. Demographic Description of Participants Demographic Characteristics
LoA1c Group
Number of participants Women Men Age range (years) Average age (years) Uses insulin pump Lives in two-parent family Lives in single-parent family A1c range Average A1c Family size range
7 5 2 14 –16 14.7 5 6 1 6.9 – 8 7.7 3–7
HiA1c Group
11 8 3 14 –16 15.1 8 8 3 9 –11.3 9.6 3–6
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parents’ involvement in diabetes care? Q Probes included bWho is more involved in your care, and in what ways?Q; bWhat kind of diabetes management tasks do your parents perform?Q; and bHow has your parents’ involvement changed since you were first diagnosed? Q Individual interviews with adolescents were conducted immediately after each teen’s clinic visit in a comfortable private room in the medical center complex away from the clinic area or in the participant’s home if the parents or participant could not wait for the interview to be completed after the clinic appointment. Interviews in participants’ homes took place within 1 week of the clinic appointment. Thirteen interviews were conducted in the clinic setting and five in home settings. When the interviews were completed, participants received $15.00. All interviews were audiotaped and subsequently transcribed verbatim. ANALYSIS Qualitative content analytic methods (DowneWamboldt, 1992; Neuendorf, 2002) were used to identify and then compare how teens in the HiA1c group versus those in the LoA1c group described their relationships with their parents and family as well as their parents’ involvement with diabetes management. First, the investigators divided the interviews into two sets based on the teens’ mean HbA1c level and read and reread the verbatim transcripts within and across each set in their entirety to identify patterns within the context of the interviews as a whole. Next, two of the investigators independently reviewed the verbatim transcripts and identified major categories related to parental roles, parent –teen and teen –family relationships, and parents’ involvement with diabetes management. Then, the investigators met together and used a consensual process to develop initial coding categories that were organized into a preliminary coding template (Crabtree & Miller, 1999). Using this preliminary coding scheme, one of the investigators systematically coded each of the interviews on a line-by-line basis to ensure that topics were not missed. Next, the investigators reviewed the findings and identified five common themes. After the identification of themes, the investigators used cross-comparative strategies to identify similarities and differences in the ways that participants in the HiA1c group versus those in the LoA1c group talked about specific themes. To aid this comparison, a summary data display table
(Miles & Huberman, 1994) listing key quotes by participant ID number and group was constructed for each theme. A variety of strategies were used to establish trustworthiness and rigor in this study (Lincoln & Guba, 1985; Sandelowski, 1993). The investigators drew on their rich clinical expertise in working with adolescents with diabetes and their families to develop the interview guide and interpret the data. Before the analysis, the transcripts were checked against the recordings to ensure that interviews were accurately transcribed verbatim. The audit trail (consisting of audiotaped interviews, verbatim transcripts, data analysis notes, the coding template, analytic memos, and data tables) was reviewed and critiqued by the qualitative research consultant who also has clinical and research expertise in working with youth with chronic conditions. The qualitative consultant independently coded one fourth of the transcripts using the coding template to validate this coding scheme and reviewed all the audiotaped interviews to verify that the findings were interpreted appropriately within the context of the interviews. FINDINGS Five themes emerged from the qualitative analysis of adolescents’ stories about parental roles and involvement in managing diabetes. The five themes include the following: (a) gaining freedom and responsibility for diabetes management; (b) feeling bothered by parental reminders to manage their diabetes; (c) closeness of family and parental relationships; (d) parental involvement in diabetes management monitoring; and (e) parent–teen conflict related to diabetes. Similarities and differences in how teens in the HiA1c group (HbA1c = mean N8%) versus those in the LoA1c group (HbA1c = mean V8%) talked about each of these themes are described.
Gaining Freedom and Responsibility for Diabetes Management More teens in the LoA1c group than in the HiA1c group talked about gaining freedom and responsibility for their diabetes management and were more positive about assuming responsibility for managing their diabetes. For example, one teen noted that her ability to manage her diabetes helped her be independent away from home: I’m not at home a lot. I’m one of those people that can’t sit at home. I’m always doing something. And so. . .I took
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charge. . .probably about 8th grade. I finally started to take over on my own.
This teen contrasted her current independence with how she comanaged her condition with her mother when she was younger: My mom would help me. We’d decide together how much I was going to do. Or I’d ask her. Now, she’s not even home half the time when I eat.
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Feeling Bothered by Parental Reminders to Manage Their Diabetes This theme was emphasized more by the teens in the HiA1c group who also had a more negative view of their parents’ reminders than the teens in the LoA1c group. Only two teens in the LoA1c group talked about being aware and sometimes annoyed by reminders.
Several teens in the LoA1c group described gaining freedom and responsibility but noted that their parents continued to keep track of their metabolic control.
Sometimes my Mom just bothers me and bothers me. . .She always makes me count what I eat. I know how to do it; I just am really lazy about that. . .So she picks on me about that.
They let me go out and do things by myself and everything, but they always ask me what my blood sugars have been every day.
Another teen in the LoA1c group noted that parental reminders decreased in frequency and intensity as she grew older and assumed more responsibility:
In contrast, fewer teens in the HiA1c group talked about gaining freedom; those who did mentioned difficulties that they were experiencing in managing their diabetes. For example, one teen who was having difficulty managing her diabetes was also aware that her mother’s involvement would need to change when she went to college: My Mom is learning to let go because in a couple years. . .she’s going to have to let go all together. So she’s just kind of letting go more and more all the time and kind of giving me more responsibility.
Several of the teens in the HiA 1c group described skipping blood glucose monitoring, insulin, or meals on occasion. It is interesting to note that they were aware of the consequences of not following their treatment protocol and their parents’ frustration, but this awareness did not motivate them to assume more responsibility. As one teen said, I think they [my parents] did [let go]. Just. . .because they were sick of it. . .They wanted me to start doing my own blood sugars. dCome on, you can do it.T But, I started sort of skipping out on my blood sugars a lot. They had to remind me [to test my blood].
Another teen pointed out that his father wanted him to assume more responsibility: My Dad wants me to start. . .picking it up now because he can’t always get it at the time I need it.
Overall, the teens in the LoA1c group seemed more comfortable and pleased with assuming more responsibility for their diabetes than the teens in the HiA1c group who were struggling with higher HbA1c levels and difficulties managing their diabetes.
When I was younger, they’d always bug me about drawing up my insulin and doing all this stuff. But now they. . .lost a little bit with the pressure.
The adolescent counterparts in the HiA1c group were more upset and irritated by parental reminders. It is important to note that these teens also described skipping shots and glucose testing. One adolescent reported, I wish my Mom would not bug me so much about everything. . .like doing my tests and my insulin. I wish she’d kind of let go of that too and give me more of my responsibilities of that. And sometimes she makes me mad when she has to continually tell me [what] to do.
Another teen who was not adhering to his treatment regimen said, I’d go out with some friends and like wouldn’t bring my medicine, my insulin and stuff. . .I’ve been yelled at too many times by my mom.
Another teen thought that his parents reminded him more when they were upset about other issues: Usually they do [trust me] but if they’re having a bad day. . .it kind of goes downhill. And they start annoying me more saying, dTest your blood. Test your blood. Test your blood.T
Another teen in the HiA1c group noted that his parents followed up when reminders did not work: I would also just tell my parents that I did my blood sugar and make up a number. And they believed me, but they’d go check and see that I actually didn’t. So, my Mom held my blood sugar machine downstairs and watched me — made me come and do it.
Teens in the HiA1c group tended to ignore parental reminders rather than use reminders to improve their diabetes management.
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Closeness of Family and Parental Relationships More teens in the LoA1c group than in the HiA1c group talked about how supportive their families were to them. One of the teens in the LoA1c group noted how diabetes brought his family closer together by saying, We all sit down at the table. . .and right before we eat we check my blood sugar and then we’ll discuss [how] my numbers have been good for the past week. And we all do it as a family thing instead of. . .by myself. It’s easier.
Another boy in the LoA1c group said, We all have a pretty good relationship. . .We don’t have a whole lot of time together but. . .when we are together; there usually isn’t any fighting.
Although some adolescents felt closer to their families after their diabetes diagnosis, others did not think that the relationship had changed because of diabetes. As one teen in the LoA1c group said, I don’t think it’s much changed. It’s probably been the same relationship as we had before, but they [parents] just worry a little bit more.
In terms of managing their diabetes, teens in both groups tended to rely more on mothers for helping them manage their diabetes. As a result, several teens talked about close relationships with their mothers. As one teen in the HiA1c group said, She [mom] always says that if she could take my place, she would. She’d rather have diabetes than me. I think it made me and my Mom closer in a way because she got more involved.
Similarly, a teen in the LoA1c group said, I am close to my Mom. He [dad] wouldn’t know what to do if I got into a situation where I needed to go to the hospital. . .that’s why I’d rather be with my Mom in that situation.
Teens’ views of their fathers’ involvement in diabetes were more variable. Some fathers were described as being very involved and knowledgeable about diabetes and its management from the time of diagnosis whereas others were not. For example, one teen in the HiA1c group said that he relied more on his father than his mother for advice: I take advice from my Dad, because we’re the same almost. And it’s just easier to take some advice from somebody that you relate with.
In contrast, another teen said,
My Dad’s never really been involved much. I think he just puts it off. But that’s OK because my Mom’s mostly done all the work [related to diabetes].
Teens in both groups talked about relying on one or both parents to help them with their diabetes management.
Parental Monitoring of Diabetes Most teens in both groups were aware that their parents were actively monitoring their diabetes management but noted that it was less frequent and intense than when they were younger. A few participants in both groups described their parents’ expectations that they follow their treatment regimen. Teens in the LoA1c group tended to describe their parents’ monitoring roles in positive ways that reflected their awareness of their parents’ commitment to helping them manage their diabetes. One of the boys in the LoA1c group put it this way, They’re always there reminding me to do everything. They always know everything. . .everything that I do. They have to know all. . .every single blood sugar.
Another teen described it this way, Well, my Mom has more of a. . .hands on role. She always reminds me to check my blood. And she’s always asking. . .about my pump. Is my pump running low on insulin? Do I need to change my pump? She [mom] is as much into it almost as me.
In comparison, the teens in the HiA1c group focused on their parents’ close monitoring when they were skipping insulin injections, glucose monitoring, and meals and were away from home. Teens also noted that their parents were upset with their lack of compliance and high A1c levels. For example, one teen reported, My Dad asks me a lot about what my blood sugars are and stuff and how I’m doing with it. . .If my numbers are high, he’ll get mad at me.
One of the teens noted her concern about being totally responsible for her diabetes management in the future: It’s probably going to be kind of horrible. Because I think, as much as I hate to have to admit this, I think my parents do help me a lot with it. And if I had to just be on my own and not have them to remind me, you know, dDo you need insulin in a few days?T
Teen–Parent Conflict Related to Diabetes It is noteworthy that only participants in the HiA1c group described a high degree of conflict or
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disagreement with parents regarding their diabetes management. For three of the teens, this conflict was reflected in reports of their parents’ reactions to lack of adherence to the treatment plan. For example, one teen described a typical pattern of conflict between him and his mother: She yells at me all the time. dYou’re supposed to do your shots.T dOh, yeah. I know but I’m tired.T dYou’re supposed to test your blood.T dYeah, I know. But I did my shot already so there’s no sense in doing it.T
Another teen attributed her frequent arguments with her parents to her diabetes and low self-esteem: I don’t know it’s like hard to explain. I feel like [I have] a lot less self-esteem for myself and stuff like that because I’ve got diabetes. . .I get negative sometimes around my parents and get into arguments.
These teens’ difficulty managing and coping with diabetes contributed to frequent parent–teen conflicts. DISCUSSION The findings indicate that the participants were very aware of their parents’ involvement in helping them manage their diabetes. Overall, teens in both groups felt supported by their parents and talked about how they were assuming more responsibility for their own diabetes management. Teens often compared their parents’ current involvement with that when they were younger and noted that their parents now provided less direct care but were still involved in monitoring their diabetes management and providing assistance as needed. The emphasis that teens placed on parental support and changing roles is consistent with previous studies that have documented the importance of parental involvement in diabetes management (Wysocki et al., 1996). It is notable that the teens in the LoA1c group seemed to appreciate parental reminders to manage their diabetes whereas the teens in the HiA1c group tended to resent reminders. It is likely that parents of the teens in the LoA1c group needed to remind their teens less often than parents in the HiA1c group and that their reminders were more often associated with maintaining good control than addressing lack of adherence. For the teens in the HiA1c group, their reported lack of adherence and problems with metabolic control could, in turn, have heightened their emotional reactivity and influenced their negative views of parental reminders. Also, the teens in the HiA1c group and their parents might have felt more pressure to
achieve the standard of care and experienced more difficulties in reaching this standard for a variety of reasons. Although adherence to treatment is a critical factor in successful outcomes, it is not the only factor. Physiological factors, exacerbated by hormonal fluctuation and stress in puberty, can also contribute to poorer metabolic control in teens with diabetes. The findings strongly support the importance of the quality of the relationship between adolescents with diabetes and their parents as a critical factor in diabetes management. Teens’ stories provide further evidence that an emotionally close and supportive relationship with one’s parent(s) serves as a strong protective factor for teens with diabetes whereas persistent parent–teen conflict related to diabetes management is a risk factor associated with poor metabolic control (Patterson & Garwick, 1998; Weihs, Fischer, & Baird, 2002). Although the teens in the HiA1c group were aware of the importance of self-management and its importance to health outcomes, they chose to occasionally skip glucose testing, meals, and insulin injections, especially when they were away from home with friends or in new social situations. Our findings are consistent with those of Wysocki (1993), who found that family communication and conflict resolution skills were strong predictors of Type 1 diabetes outcome variables. Teens’ stories illustrate that diabetes management is inextricably interwoven with interpersonal factors and the social worlds of adolescents. It is important to note that the conflict reported by the teens in the HiA1c group focused on the teens’ lack of adherence to their treatment regimen. Teens acknowledged that their parents were aware of their lack of adherence and spontaneously described the various ways they tried to get them to adhere to their regimen. The findings reflect how participants viewed the impact of diabetes on themselves and their families and the complexity involved in managing diabetes during middle adolescence.
Clinical Implications Although there are many other factors that can influence metabolic control (e.g., important hormonal changes during early adolescence and relationships with siblings and peers), parental relationships and involvement are central. We suggest that clinicians periodically assess parent– adolescent relationships and roles in managing diabetes. Both parents and adolescents need to be
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interviewed to provide an accurate portrait of how diabetes is managed in the family context. Recurring parent – teen conflicts about diabetes management alert clinicians to work with teens and parents on strategies to improve diabetes management without disrupting the quality of parent – teen relationships. Like Mellin et al. (2004), we recommend that clinicians assess adolescent and parental concerns in clinic visits and work to keep parents informed and appropriately involved in diabetes management. Further assessment of the sources of conflict and barriers to adherence is needed to determine the issues and patterns that are triggering conflict and problems with adherence. For teens in this project, difficulty adhering to the treatment protocol was related to a wide variety of factors that ranged from being tired of having to manage diabetes to not wanting to be different from peers. The parent–teen conflict reported by the teens in the HiA1c group suggests that parents may have been frustrated with their teen’s high blood glucose levels and lack of adherence. These findings correspond to Mellin et al.’s study in which parents’ disapproval about how their daughters managed aspects of their diabetes was the most commonly identified source of parent – teen conflict related to diabetes management whereas teens’ annoyance with parental reminders was the second most common source of conflict. Both teens and parents could benefit from developmentally appropriate interventions that help them deal with the daily demands of diabetes within the context of the home and community environments. For example, Anderson et al. (1999) designed an intervention with teens and parents aimed at maintaining the parent–teen network in diabetes management while reducing diabetes-related conflict between the parents and adolescents. Compared with a control group that received standard clinic care, the teamwork group did not experience deterioration in the parent role either in insulin administration or in blood monitoring for glucose. They concluded that the parent role could be enhanced through this low-intensity office-based intervention especially because the program helped reduce diabetesrelated family conflicts. Persistent, unresolved parent teen conflict regarding diabetes management points to the need for more intensive interventions to help teens and their parents address risk-taking behaviors and manage diabetes in social situations. For example, Wysocki et al. (1997) found that the Behavioral Family Systems Therapy was more effective
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than standard diabetes education and support approaches in improving communication and problem-solving skills among families of adolescents with Type 1 diabetes. Teens need to learn how to manage their diabetes along with competing demands and interests whereas parents need specific information about their teen’s capabilities and how to address conflict and problems with adherence. The research by Knafl, Breitmayers, Gallo, and Soeller (1996) on family management styles and the process of normalization in families of children with chronic illness provides a useful framework for understanding how teens and their parents work together to manage diabetes within the sociocultural context of the family. Clinicians need to consider each family’s unique social world and cultural background as well as individual family members’ perspectives on managing diabetes as they work with teens and their parents. If clinicians find that unresolved conflict is negatively affecting parent – teen relationships, referral to mental health counselors may be appropriate. The finding that some teens did not think that their fathers understood diabetes or how to help them at times of crisis suggests the importance of including both mothers and fathers in diabetes education and providing periodic booster sessions that consider diabetes management within a developmental context. Although parents were not interviewed in this study, teens’ accounts suggest that parents might benefit from support from clinicians in their attempts to help their son or daughter manage diabetes and achieve good metabolic control. Several teens in the HiA1c group indicated awareness of their parents’ frustration and concern when they skipped aspects of their treatment protocol. These emotional reactions and conflict around diabetes management indicate the need for parental support either in groups with other parents of adolescents with diabetes or in counseling with their teenagers. In addition to the specific recommendations for individual teens and parents, we suggest that clinicians consider anticipatory interventions with parents of children with diabetes just as they are entering puberty. Interventions could take many forms such as individual or group education sessions for parents. Parents could consider the developmental needs of young adolescents and how these needs create change in parent – child relationships and who manages various aspects of the
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diabetes. Reading materials, films, and developmental experts could help parents prepare for these important developmental changes. Clinicians also need to consider the emotional support and guidance needed by parents who play such a pivotal role in helping the young person with diabetes. Likewise, adolescents with diabetes need emotional support and guidance from their providers. Clinicians can never lose sight of the daily struggle of diabetes care and how difficult it is to concurrently negotiate the developmental changes of adolescence. Interventions that go beyond standard clinic appointments to review HbA1c levels should also be considered for adolescents.
Research Implications This study raises the importance of parent– adolescent relationships in health outcomes in adolescents with diabetes. Further investigation of risk and protective factors in parent–teen relationships that influence diabetes management and metabolic control is needed. This study provides portraits of parent–adolescent relationships and diabetes management through the eyes of teens with diabetes. Studies about mothers’ and fathers’ experiences in raising adolescents with Type 1 diabetes are also needed. Understanding how parents feel about having an adolescent with diabetes, how they view their role in diabetes care, and how they see that role changing during
adolescence would be very informative in the development of interventions. It would also be helpful to learn what kind of clinical services teens and parents need from health-care providers during the adolescent years.
Conclusion Decades of research on child and adolescent development demonstrate the crucial roles that parents play in the lives of their children from prenatal life to young adulthood. This study underscores the importance of parents in the health outcomes of teens during middle adolescence. The teens relied on their parents for support and guidance in managing their diabetes. Having a supportive parent was critically important to the teens in this study. Parent–teen conflict was an indicator that teens were having difficulty following their diabetes protocol and that parents were bothered by the lack of adherence. We strongly suggest that the relationship between parents and teenagers with Type 1 diabetes be considered as a central component of health-care delivery. ACKNOWLEDGMENTS This study was supported in part by the Center for Nursing Education: Children with Special Health Needs, which is funded by the Maternal and Child Health Bureau (MCH-279184-01-0).
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