Type 1 diabetes through two lenses: comparing adolescent and parental perspectives with photovoice
© Walker et al. 2016
Received: 23 October 2015
Accepted: 12 January 2016
Published: 20 January 2016
Parental support and care-coordination are vital for youth with type 1 diabetes (T1D) in achieving positive health outcomes. Yet, studies are rarely designed to identify factors that influence parent/youth collaboration or how their perspectives about diabetes may vary.
Photovoice was used to explore how adolescent and parental perspectives on T1D compare to identify factors that may influence care collaboration. A follow-up study was conducted where parents/caregivers of adolescents with T1D were prompted to take and explain five photos capturing what diabetes meant to them. Selection criteria included having a child 12–19 years with a diagnosis of T1D (≥2 years since onset). Thirty-three parents/caregivers participated (24 mothers, six fathers, two grandmothers, and one grandfather of 19 sons/14 daughters; mean age 15 years [±2.1]; mean disease duration 6 years [±3.3]). Content analysis was used to compare parent/caregiver photos with those captured by adolescents in a previous study with 40 youth participants (20 males/20 females; mean age 15 years [±1.9]; mean disease duration 6 years [±3.9]) through a method of constant comparison. Socioeconomic status was measured by household income and parental education. Glycemic control was captured by HbA1c. Mann-Whitney U testing was used to compare representations across demographic variables (202 youth photos, 153 parental photos).
Over half of adolescents and parents took at least one photo of: (1) diabetes supplies (2) food (3) coping mechanisms/resilience and (4) disease encroachment. Parents and adolescents similarly framed food-related issues as a major source of frustration in diabetes care. However, narratives about diabetes supplies differed: adolescents framed supplies as a negative aspect of diabetes whereas parents tended to celebrate supplies as improving life. Also, images of disease encroachment differed: adolescents took photos of their bodies to depict how diabetes trespasses on their lives whereas parents took pictures of clocks to denote sleep disruption or exhaustion from constant care demands.
Food-related issues and varying views on supplies may trigger diabetes-specific conflicts. Contrasting viewpoints about the most cumbersome aspects of diabetes may provide insight into differential paths for interventions aimed at offsetting the burdens of T1D for adolescents and parents.
KeywordsType 1 diabetes Adolescents Glycemic control Parents Caregivers Photovoice
Navigating the demands of type 1 diabetes (T1D) can be particularly challenging during adolescence. Studies consistently show that maintaining near optimal glycemic control is difficult during this time period due to rapid physiological as well as psychosocial changes that accompany the transition to adulthood [1–3]. Amidst these challenges, high levels of care coordination between parents and youth are required to achieve targets for glycemic control. Parental involvement, support, and consistent monitoring of diabetes care improve glycemic control for adolescents living with T1D [4–7]. Conversely, diabetes-specific family conflict is identified as one of the greatest barriers to achieving optimal glycemic control in T1D for adolescents [8–12].
It is vital to identify potential triggers or causes of diabetes-specific conflict for families living with T1D given its established importance in glycemic control. It is certainly understood that diabetes, itself, creates tremendous strain on the ecosystem of a family unit with intensive insulin regimens, constant food mindfulness, and the irrevocability of living with a chronic illness. However, pinpointing specific areas related to diabetes experiences within families that breed conflict is necessary to develop possible solutions.
To better understand basic perspectives on the ways adolescents living with T1D and their parents/caregivers perceive and experience this disease, we conducted an exploratory study using photovoice . Photovoice is a method where participants are asked to frame some part of their lived experience or lives through the use of photography [13–17]. The methodology from a previous study we conducted with adolescents [18–20] was replicated by providing disposable cameras to parents/caregivers of adolescents living with T1D and prompting them to “take five pictures of what diabetes means to you.” A systematic content analysis was conducted of the parental/caregiver photo narratives and compared to previously collected adolescent photo narratives to identify similarities and differences among representations. Adolescents and parents similarly framed food-related issues as a source of frustration in diabetes care, but demonstrated fundamentally different perspectives regarding diabetes supplies and themes of disease encroachment.
You know better than anyone what it is like to live with diabetes — and your involvement in this study will allow us to better understand your experiences. With the disposable camera you have been provided, take 5 pictures that show what diabetes means to you. As you take each picture, keep the following idea in mind: To me, diabetes is ____. Imagine explaining what it means to live with diabetes to someone who has no idea what that may be like. For each picture you take, make sure to complete the table on the next page to help explain your choices.
The table contained in the survey provided a space for participants to list the picture taken (“list the pictures taken”) and then provide a narrative explanation of what that particular picture represented to them about diabetes (“explain what each picture represents about diabetes to you.”) All research survey materials and disposable cameras were taken home for completion and youth participants were provided with a postage-paid envelope to return them. A $30 money order was sent to youth when they returned their materials. In an effort to ensure high return rates, reminder postcards were mailed after 2 weeks, reminder phone calls made after 1 month, and then an entire new packet of materials mailed to non-responders after 2 months.
A year following the completion of the first study we replicated these same procedures in a follow-up study with parents/caregivers of T1D adolescents who met the same selection criteria. Parents/caregivers were given the exact same instructions with provided disposable cameras. In cases where an adult other than a parent had full custody, was legal guardian for a youth, or lived in the same household with the youth, they were eligible to participate. Parents who had a youth participate and return completed materials in the first study were all mailed recruitment packets with a letter explaining the new study and inviting them to participate. New enrollment also took place in clinics and related diabetes camps with parents and caregivers. A $10 Starbucks card was sent to each parent/caregiver who participated in the second study.
Several demographic measures were captured in surveys completed by the parents. Socioeconomic status (SES) was measured several ways including total household income and parental education (both in years and by degree type). Other demographic variables included gender, age (for youth, parents, and all persons within the household), race/ethnicity, years of disease duration, and marital status. HbA1c was also recorded from patient records as an indicator of glycemic control.
Data analysis was multilayered and mimicked techniques utilized in the first study with adolescents. A content analysis of photos and photo narratives was conducted to determine the major categories of representation presented by parents/caregivers. This analysis involved a hybrid technique of quantitative content analysis [21, 22] as well as a qualitative method of constant comparison associated with grounded theory [23, 24] to determine major themes of representation. Thus, the analysis involved an interplay of quantitative content analysis whereby the number of photos was counted according to a typology that was developed by multiple coders (“what” coding – x number of pictures were of diabetes supplies, x number of photos were of food, and so on) and subsequently refining and systematizing these categories through qualitative comparison of the narrative meanings provided for them (“why” coding -- x% of the supplies photos represented challenges, x% of the supplies photos represented describing their use, etc.). Photo-index scores [18–20] were subsequently developed to indicate the total number of pictures taken by a given parent/caregiver for each of the major photo categories (e.g. a photo-index score of two meant that a parent devoted two of her five pictures to food depictions).
All quantitative measures were analyzed using SPSS (Statistical Package for the Social Sciences; Version 21 when the research began but Version 22 by its completion – IBM, Armonk, NY), while atlas.ti7 (GmbH, Berlin) served as the workbench for qualitative analysis. Multiple coders participated to establish adequate levels of inter-coder reliability  (>95 % for youth photos and >90 % for parent photos). Pearson’s correlation was used to examine relationships among our quantitative measures like SES (income) and HbA1c, and photo-index scores were compared among different groupings within our sample using Mann-Whitney U testing for statistical significance.
Results and discussion
n = 40
n = 33
Completed By: 24 mothers, 5 fathers, 1 stepfather, 2 grandmothers, 1 grandfather
15 ± 1.9
15 ± 2.1
6 ± 3.9
6 ± 3.3
8.5 % ± 0.8
8.3 % ± 1.3
8.6 % ± 1.5
8.2 % ± 1.6
10.2 % ± 0.6
8.7 % ± 3.0
8.8 % ± 0.4
8.5 % ± 1.2 --
8.1 % ± 1.3
9.5 % ± 1.6
9.3 % ± 1.9
8.2 % ± 0.9
7.9 % ± 0.9
8.3 % ± 0.6
7.5 % ± 0.7
Areas of similarity: food as frustration
Areas of contrast: diabetes supplies and encroachment
Youth depicted supplies as limiting their freedom; parents, however, often described supplies and specific technologies related to insulin and blood glucose monitoring (BGM) as providing freedom. Undoubtedly, parents, like youth, also showed that supplies took over refrigerators and drawers within their homes and had to be toted everywhere they went. “Every day and every time we go into the fridge we see RX,” says a mother of a 15-year-old female describing a photo of insulin on a refrigerator shelf. Unlike youth, parents/caregivers also took many photos with narratives celebrating how grateful they were for specific supplies and conveyed that they made diabetes care easier and more manageable (Table 3). Roughly sixty percent of photo narratives about supplies by parents/caregivers were about the positive aspects of supplies and diabetes technology, whereas less than five percent of youth narratives were.
A content analysis of photos and narratives about what diabetes means to parents/caregivers of adolescents with T1D demonstrates several noteworthy areas of overlap and divergence with adolescent depictions. First, our data demonstrate that food-related negotiations and food-mindfulness surrounding diabetes care is denoted as a major source of contention by parents and youth. Second, the perception of diabetes supplies as restricting freedom by youth varies sharply from the portrayal of diabetes supplies as providing freedom by parents/caregivers and could serve as a trigger for diabetes conflicts within households. And third, the tendency for youth to show their bodies as a place of self-mutilation versus the parental tendency to show time/clocks and sleep disturbance could also signal an important area that may induce diabetes conflicts. For example, sleep fatigue, itself, limits one’s defenses when dealing with challenges associated with diabetes and puts parents in a particularly vulnerable state when faced with conflict. Moreover, these findings were consistent across income and educational thresholds signaling that such issues are paramount for families regardless of SES.
Our findings about food-specific challenges from the first study we conducted with adolescents have been published elsewhere  and indicate that this area of diabetes care warrants careful attention from providers. This follow-up study showed that parents/caregivers, too, devoted a significant portion of their photo-narratives to food issues. The role of dietitians is vital in helping families deal not only with medical nutrition therapy (MNT) but also to help prepare families for the tremendous social impact this part of diabetes care has on the entire family unit.
As for the findings related to diabetes supplies and areas of disease encroachment, there are important implications for glycemic control in T1D for adolescent populations. These data indicate that youth feel a loss of control over their bodies as well as their ability to prevent others around them (family and total strangers alike) from telling/asking/probing about their disease. Adolescence is a time where youth, regardless of T1D, desire greater autonomy and also strive towards the “norm of sameness” in peer culture [25–28]. Thus, while a new technology like a continuous glucose monitor (CGM) may be celebrated by a father for allowing him to know what his daughter’s blood glucose levels are while away from her, this simultaneously represents a limit to privacy for his daughter and could lead to maladaptive behaviors related to glycemic control (e.g. disabling a device, hiding/covering, etc.). It will be vital for adolescents with T1D to feel a sense of control and efficacy as much as possible when working out a shared system of how and when these technologies are used by parents.
The limitations of this study design include the underrepresentation of non-white participants and attrition (a 50 % return rate for completed packets). Also, there were not enough fathers/male caregivers in our sample to yield a systematic comparison of how maternal and paternal experiences may vary in diabetes. Future studies are needed to better elucidate the perspectives of teens who are non-white and of fathers/male caregivers specifically. However, despite these limitations, these findings provide new and unique insight into potential sources of diabetes-specific conflict within households. The photo-narratives reveal significant differences in how teens and parents/caregivers living with T1D perceive technologies like continuous glucose monitors and insulin pumps and allow a rare look at this disease through two sets of lenses that are equally important in considerations for clinical care. These findings also point to the importance of differential interventions aimed at reducing strain associated with T1D for teens and their parents: adolescents are most burdened by the intrusiveness of diabetes to their bodies whereas parents by the interruption to sleep and schedules. We present the methodology and techniques used in this research as a vehicle for providing improved communication and empathic role-taking within families as well as within clinical settings.
blood glucose monitoring
continuous glucose monitor
medical nutrition therapy
type 1 diabetes
This study was made possible through support from Mars Hill University’s office of the Executive Vice President and related funding through the Faculty Enrichment and Renewal Committee (FERC). No potential competing interests relevant to this article were reported. We extend our sincere gratitude to the families who participated in this research. We are thankful for statistical analysis support provided by Dr. Don Russell (Ph.D.) of Mars Hill University and are indebted to Kathryn Parker (RD, LD/N), Shannon Patrick (ARNP, MSN), Kaitlin Sovich (RC1), and Kelsey Salazar (RC3) at the University of Florida for ongoing support throughout this project.
Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
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