Journal of Adolescent Health 36 (2005) 71.e9 –71.e13 Adolescent health brief Assessing adolescents with insulin-dependent diabetes mellitus: a multiple perspective pilot study using visual illness narratives and interviews Mara H. Buchbinder, B.A.a,d,*, Mark J. Detzer, Ph.D.b,c,d, Robert L. Welsch, Ph.D.e, Ann S. Christiano, M.S., A.R.N.P., C.D.E.f, Jennifer L. Patashnick, B.S.g, and Michael Rich, M.D., M.P.H.g,h a Department of Psychology, Dartmouth College, Hanover, New Hampshire Department of Pediatrics, Dartmouth Medical School, Hanover, New Hampshire c Department of Psychiatry, Dartmouth Medical School, Hanover, New Hampshire d Steps Toward Adult Responsibility (STAR) Program, Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire e Department of Anthropology, Dartmouth College, Hanover, New Hampshire f Department of Pediatric Endocrinology, Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire g Video Intervention/Prevention Assessment (VIA), Children’s Hospital Boston, Boston, Massachusetts h Department of Pediatrics, Harvard Medical School, Boston, Massachusetts Manuscript received February 25, 2003; manuscript accepted February 20, 2004 b Abstract This study explored the illness experiences of adolescents with insulin-dependent diabetes mellitus (IDDM) using Video Intervention/Prevention Assessment (VIA). Five adolescents with IDDM were asked to videotape 8 hours of their lives over a 1-month period. At the conclusion of the study, the primary investigator interviewed each adolescent and their diabetes clinician. VIA visual illness narratives and follow-up interviews provided clinically important, previously unknown information about how adolescents live with diabetes, including the negative and positive influences of diabetes on the family unit and the individual, that parental involvement was associated with adolescents’ diabetes control, and that gender may be a significant mediating factor in control. © 2005 Society for Adolescent Medicine. All rights reserved. Keywords: Chronic disease; Diabetes; Illness experience; Illness narratives; Patient-centered research; Pediatrics; Qualitative methods; Video Intervention/Prevention Assessment (VIA) Adolescents with diabetes mellitus (IDDM) experience variability in diabetes self-care and blood glucose control, owing to hormonal changes and/or psychosocial factors [1–3]. Clinicians often struggle to obtain an accurate picture of adherence to diabetes regimens. With individual and developmental differences in parents’ and patients’ reports, verbal inquiries are often inaccurate and incomplete. Video Intervention/Prevention Assessment (VIA) [4,5] uses patient-created visual illness narratives to understand patients’ experiences with chronic illness. This study sought to obtain *Address correspondence to: Mara Buchbinder, Department of Anthropology, Case Western Reserve University, Mather Memorial Room 238, 11220 Bellflower Road, Cleveland, OH 44106. a more complete understanding of adolescents’ experiences of living with, and managing, IDDM by combining data from VIA visual illness narratives with interviews of patients and their clinician. Methods Sample Participants were recruited from the Dartmouth-Hitchcock Medical Center Pediatric Diabetes by the provider who serves as the clinical coordinator and primary clinician for diabetes clinic patients. Participants were chosen using a demographically representative sampling technique devel- 1054-139X/05/$ – see front matter © 2005 Society for Adolescent Medicine. All rights reserved. doi:10.1016/j.jadohealth.2004.02.019 71.e10 M.H. Buchbinder et al. / Journal of Adolescent Health 36 (2005) 71.e9 –71.e13 oped for VIA [4]. Patients between 13 and 18 years of age with IDDM were eligible for participation. Informed consent was obtained on enrollment; the VIA protocol and consent were approved by the Institutional Review Board of Dartmouth College. Visual illness narratives The primary investigator (PI) trained participants to use video camcorders using indirect methods [4], asking them to create visual illness narratives by recording events from their daily lives over a 4-week period, completing 2 hours of tape each week. Participants were provided with tripods for self-taping and were allowed to ask others to use the camcorders to document their daily activities. Participants were encouraged to show what they thought was most important about their illness experiences and asked to include specific lifestyle and diabetes-related elements. They were asked to record three personal monologues per week, recording their observations, thoughts, and feelings. Finally, they were asked to conduct interviews with family, friends, or other important people in their lives about their perceptions of the participant’s illness experience. During the taping period, participants had weekly individual meetings or phone calls with the PI to discuss their progress. Interviews The PI conducted structured follow-up interviews with each participant in his/her home between 2 and 4 weeks after completion of the visual illness narrative. The PI then conducted an audiotaped interview with the clinical coordinator to obtain her perspective on each participant’s medical status. Data analysis Analysis of the visual illness narratives followed established VIA technique [5], examining patterns of behavior, interpersonal interactions, and psychological disposition toward the illness. Key themes of illness experience were developed using grounded theory [6] and coded in NVivo (Qualitative Solutions and Research, Pty, Ltd., Victoria, Australia, 1998). Results Five adolescents (three males, two females; 13–18 years old) from rural New Hampshire and Vermont participated in this study. All participants were Caucasian; three were of middle socioeconomic status, two were of lower socioeconomic status. Parental involvement and diabetic control The two study participants with the lowest and most stable HbA1c levels involved their parents the most in their diabetes self-care; those whose visual illness narratives displayed less parental involvement in their diabetes manage- ment had higher and fluctuating HbA1c levels, suggesting poorer metabolic control. Despite her regular clinical contact with the participants, the clinical coordinator was often unaware of the parental support that her patients received. Of one participant with very good metabolic control, the clinical coordinator said, “Certainly her parents are in the background being supportive, but I think that she takes on a lot of that management herself.” In her visual illness narrative, the participant was seen to receive extensive parental support with nutrition (showing her plate to her father before eating birthday cake) and medical management (the father administered one insulin injection per day). One 17-year-old boy felt that his parents dealt with him more as health clinicians than as parents. His mother became quite antagonistic toward him in a videotaped interview: Mom: “How do you give us a hard time? By not caring about your blood sugar?” Son: “Yes.” Mom: “By not caring if it’s in control?” Son: “I care if it’s in control, Mom, I try! You don’t know.” (Mimicking mother.) “Oh, just ‘cause I’m a nurse I know.” (Mom laughs.) The clinical coordinator’s perception of his parents’ involvement was very different. “For having two parents who are [clinicians], they’re kind of relaxed about it. They don’t think it’s a big deal if his diabetes is not in good control.” The clinical coordinator theorized about the mother, “I think she worries, but I think she worries silently.” In another visual illness narrative, a single father maintained his belief in letting his daughter be independent. In an interview, he explained: “I went in with you a number of times for your checkups but now I just sort of sit outside and let you go in by yourself because I think you need to . . . learn to deal with these people on your own. . . . I just think they’ve done a fairly consistent job of communicating to you what they think your needs are . . . .” In her interview, the clinical coordinator saw this patient’s father’s behavior as unsupportive, relating it to the participant’s poor blood glucose control. “She’s a kid that I see has not allowed diabetes to get in the way, kind of does her ‘own thing,’ and if diabetes doesn’t fit into that, it’s okay . . . Her dad is distantly supportive, I think. He brings her to appointments. He doesn’t come into the office unless we ask him to come in, and I think she probably manages it pretty much on her own.” Although the father felt he was acting appropriately in giving his daughter autonomy, the clinical coordinator perceived his behavior as disinterest. Impact on family When asked by participants how diabetes affected their lives, parents cited issues such as insulin administration, diabetes education, food preparation, scheduling, sleep dis- M.H. Buchbinder et al. / Journal of Adolescent Health 36 (2005) 71.e9 –71.e13 turbance, and increased worry for their child’s well-being. Interviewed by his 14-year-old daughter, a single father who had come home to find her unconscious due to diabetic shock explained his need to stop working the night shift: “I just couldn’t do it. There are times that I would find myself, even busy as I could possibly be, it would creep into my mind— oh god, I hope she’s alright. That’s it. I hope I don’t go home and find her laying on the floor.” An 18-year-old participant’s father pointed out to him that his older brother is wary of taking on the responsibility of being alone with him because of fear of a low blood sugar episode. One participant told a friend on video that she believes that she has gotten along better with her brother since her diagnosis. The friend suggested that her brother “feels he has to pity you.” The participant shrugged, said “Hmm, yeah, well,” and then told her friend to turn off the camera. Adaptation and coping Without prompting from parents or other interviewees, none of the participants offered insight about coping with and adjusting to diabetes in their visual narratives. Although he had had diabetes for 15 years, one 17-year-old participant was unable to express his feelings on tape. In his follow-up interview, he related: “I don’t think I’ve really come to terms with it yet. It’s still a hard thing in my life . . . I don’t think I’m old enough yet. I think when I’m older I will, because I’ll be more responsible and stuff. And probably I’ll have to come to terms with it when I go to college.” In an interview with her school nurse, a female participant stated that despite her frustration with diabetes, “I’ve never really been in a sad mood. I think I get sad over regular things like a boy dumping me or something. Never really had depression, never really wanted to cut myself or anything.” Gender as a potential mediating factor for diabetes self-care Males were more likely to perform blood glucose tests and insulin administration privately in their bedrooms, whereas females performed their diabetes self-care in public areas of their home. For the females, all nine recorded testing episodes occurred in the living room or dining room, whereas only 7 of the males’ 16 recorded testing episodes (44%) occurred outside of the privacy of the bedroom. One female exhibited comfort-eating behavior, consuming half a package of Premium crackers (75 carbohydrate units) after her boyfriend broke up with her. “My afternoon snack, right there,” she said. Another female stated that in 3 of 15 (20%) of her personal monologues that she had “been snacking too much,” and told the clinical coordinator the same during a clinic visit. This participant’s parents and best 71.e11 friend further reinforced her guilt by teasing her about snacking. In contrast, male participants ate liberally and did not obsess about portions in their visual illness narratives. One male participant spoke of constructing a weight room in his house. He noted during a personal monologue, “I like to work out but I need to go to a gym because my weights are not technically advanced, you know, so I can’t get those friggin’ pounding, gripping muscles, like those big f—– jock muscle f—– heads like you see in those magazines.” His desire for big muscles, inspired by the depiction of masculinity in media, proved beneficial to diabetes control. Both females expressed guilt about not exercising enough. Dealing with the stigma of diabetes All of the participants indicated feeling stigmatized. They reported being upset by friends’ and strangers’ reaction to their diabetes. Visual illness narratives recorded several instances of peers’ attempts to keep participants from eating “dangerous” foods. Mindy: “. . . She’s eating French fries.” Gwen: “She’s eating the whole thing! Becky, aren’t you going to get high [blood glucose]?” The female participants in this study showed more peer involvement in eating behavior than males revealed. Participants related others’ fear of needles and discomfort with public insulin shots. During their follow-up interviews, two males recounted instances in which strangers mistook their syringes and insulin for illegal drugs; another spoke of a woman calling security when he administered insulin in a shopping mall. The positive side All of the visual illness narratives revealed a positive side to life with diabetes. Parents indicated that their children ate more nutritiously and were more organized than their peers. Father: “On the positive side of things, the fact that you need to be somewhat structured. All the times we would measure food, we got real familiar reading the USDA proclamations for serving size, so that taught you a lot about nutrition, which a lot of kids your age don’t have . . . ” Parents saw their children as more mature for having dealt with diabetes. “Don’t take this the wrong way, but it’s woken you up. Smell the coffee, however you want to put it. This is it, get it together, you don’t have a choice . . .” In their visual illness narratives, participants revealed how they handled responsibility through detailed accounts of their daily lives. One participant showed an index card used to keep track of injection site rotation; another revealed the designated spot where she keeps her test kit at home. One participant noted diabetes camp and a support group for 71.e12 M.H. Buchbinder et al. / Journal of Adolescent Health 36 (2005) 71.e9 –71.e13 teens with chronic illness as special opportunities that she has received because of diabetes. Thus, although diabetes was an inconvenience and occasionally a source of struggle, participants noted the development of responsibility and better self-management skills. Discussion Through patient-created visual illness narratives and interviews of participants and their clinical care coordinator, this study yielded important information about the experience of living with IDDM as an adolescent. Specifically, it found support for a positive association between parental involvement and metabolic control, and showed that diabetes has a substantial impact on family function. Visual illness narratives indicated differences between males and females in diabetes management styles and social support networks. Participants showed that diabetes and its management carried an uncomfortable stigma, but also related positive benefits of living with diabetes. Limitations of this study include its small, ethnically homogeneous study population spread across various stages of adolescence that resulted from program size and geographical location, and the selection bias inherent in patientcentered methodology limited the generalizability of its results. Despite small sample sizes, phenomenological studies of adolescent diabetes have elucidated factors that shape the illness experience [7]. Our results suggest a need for further exploration of the relationship between parental involvement and metabolic control. Visual illness narratives showed parents reminding about and helping with insulin shots, carbohydrate counting and meal planning, and discussing and problem-solving diabetes-related issues, such as incidents of high or low blood sugar. Comparison between the participants’ visual illness narratives and interviews with the clinical coordinator suggest that even a thorough, detail-oriented practitioner may misjudge the nature of parental involvement with adolescents’ medical management. Although some studies dispute an association between parental involvement and diabetes control [8], others suggest that children achieve better control when parents are involved in medical management [9,10]. Deciding when to encourage independence can be a challenging task for parents of adolescents with diabetes, as age can be an imperfect marker of responsibility [10]. Adolescents may feel restricted or infantilized by parents’ involvement when their peers are withdrawing from parental authority. Thus, it is important that parents engage in ways acceptable to the adolescent with diabetes. Visual illness narratives powerfully showed the global impact that diabetes has on the family. Previous research documented family resentment toward the need to schedule life around diabetes management [11]. Disruptions in life- styles and the constant worry expressed by parents and siblings in this study reveal a need for better psychological support services for the adolescents and their families. The visual narratives revealed less about individuals’ psychological adaptation to life with diabetes. Interview studies have elicited themes of fear, depression, worry, deceit, guilt, and embarrassment about being different [1,11]. Our visual illness narratives reflected some negative experiences of diabetes found by previous research [1,7,11], but the limited appearance of emotional difficulties in participants’ everyday lives suggests that they were coping relatively well. The visual illness narratives reflect themes of genderspecific social coding raised in previous research of adolescent diabetes [12]. Williams found that adolescent males were more likely than females to perform self-care in private, and to participate in sports to care for their diabetes and promote their masculinity. Female adolescents with diabetes were more collaborative in their care and placed more emphasis on diet as a diabetes control mechanism [12]. Adolescents in this study felt that diabetes carried a stigma that set them apart. Attempts by peers to offer support may be a conflicting stimulus. For an adolescent struggling with the age-appropriate developmental task of establishing independence, the genuine concern of others for the patient’s health and safety can seem intrusive and demeaning. Participants revealed that, in stressful and beneficial ways, diabetes renders them as “other” during a time in their lives when they are intensely self-conscious and in which conformity is a survival skill, indicating the potent influence that diabetes can have on adolescents’ psychosocial wellbeing. Even the positive aspects of living with diabetes can present problems; researchers have cautioned that being special can sometimes lead adolescents to feel entitled and take advantage of families, care providers, and social systems [7,12,13]. Conclusions This brief form of the VIA method, combined with interviews of participants and their clinical coordinator, has considerable potential as a tool for clinical investigation, significantly increasing the amount of information available to health care professionals. The visual illness narratives and interviews in this study yielded findings that encompass many ways that diabetes affects an adolescent’s life, from negotiating relationships, to coping with illness, to the unique opportunities it offers to live a healthy lifestyle and help adolescents to become responsible, mature, and ultimately, independent. M.H. Buchbinder et al. / Journal of Adolescent Health 36 (2005) 71.e9 –71.e13 Acknowledgement This project received financial support from the Committee on Senior Fellowships and the Maurice R. Robinson Fund at Dartmouth College, and the Steps Toward Adult Responsibility (STAR) Program at Dartmouth-Hitchcock Medical Center. Thanks to John Campbell, Ph.D. for collaboration on this project, Sam Casella, M.D., and William Boyle, M.D. for their support in the pediatric diabetes clinic at Dartmouth-Hitchcock Medical Center, and Michael Sacca of Video Media Production, Dartmouth College for technological support. [5] [6] [7] [8] [9] References [10] [1] Kyngas H, Barlow J. Diabetes: An adolescent’s perspective. J Adv Nurs 1995;5:941–7. [2] Grey M, Boland EA, Yu C, et al. Personal and family factors associated with quality of life in adolescents with diabetes. Diabetes Care 1998;21:909 –14. [3] Lernmark B, Persson B, Fisher L, et al. 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