Using photography as a method to explore adolescent challenges and resilience in type 1 diabetes.

Patient-centered approaches to disease management are consistently recognized as valuable tools for improving health outcomes, yet studies are rarely designed to elicit adolescent perspectives. This study sought to better understand the perspectives of youths with type 1 diabetes according to key demographic variables. We conducted an exploratory study through which 40 youths were provided with disposable cameras and prompted to take five photographs each that captured what diabetes meant to them and to provide narratives to accompany their photo choices. Demographic variables examined included sex, age, disease duration, socioeconomic status (SES), race, and glycemic control (A1C). Content analysis was used for photos and open-ended responses to assign photo index scores, which were then analyzed by demographic variables using Mann-Whitney U tests for statistical significance. Analysis of photos/narratives (n = 202) revealed five main types of representations depicted by at least 50% of the young people. "Challenge" photos included diabetes supplies as tethering, food as a source of frustration, and the body as a territory for disease encroachment. "Resilience" photos included coping mechanisms and symbols of resistance. Overall, these representations were consistent across demographic categories with two exceptions. Males took more food depictions than females (P <0.005) and had fewer coping depictions (P <0.05). Youths from more affluent households were more likely to take photos of resistance (P <0.05). The use of photo index scores expands previous studies using photography by comparing demographic variation within a sample. Our findings provide insight into coping strategies and indicate that SES may provide an advantage for affluent youths in meeting diabetes-specific challenges.

Erratum: Disparities in Social Support for Youths With Type 1 Diabetes. Clinical Diabetes 2015;33:62-69.

[This corrects the article on p. 62 in vol. 33, PMID: 25897185.].

Disparities in social support systems for youths with type 1 diabetes.

IN BRIEF Low socioeconomic status (SES) is consistently identified as a major risk factor for poor health outcomes in youths with type 1 diabetes, yet little is known about the social factors that yield such disparities. This study used survey research to examine the role of SES by focusing on differential resourcing in social support systems for youths with type 1 diabetes and their parents/caregivers. We identified significant inequalities in social support systems and found that parents from lower-income households engage in few coping activities and rarely identify a primary care provider as the main point of contact when facing a diabetes-related problem. Our findings underscore the need to better connect low SES families to diabetes-specific professional resourcing and to raise awareness about the importance of extracurricular activities as a form of social support for youths.

Participants' Experiences of the 2018-2019 Government Shutdown and Subsequent Supplemental Nutrition Assistance Program (SNAP) Benefit Disruption Can Inform Future Policy.

The federal government shutdown from 22 December 2018 to 25 January 2019 created an unprecedented disruption in Supplemental Nutrition Assistance Program (SNAP) benefits. We conducted a cross-sectional qualitative study to begin to capture how the disruption affected food security and wellbeing among a small sample of California SNAP participants. We collected data from 26 low-income adults in four focus groups in four diverse California counties. We found that participants routinely struggle to secure an adequate and healthy diet in the context of high costs of living, the shutdown and benefit disruption added to participants' stress and uncertainty and exacerbated food insecurity, and it diminished some participants' faith in government. Participants reported that, while having additional benefits in January felt like a relief from typical end-of-month deprivation, the subsequent extended gap between benefit distributions and a lack of clarity about future benefits caused cascading effects as participants later had to divert money from other expenses to buy food and faced added uncertainty about future economic stability. Additionally, the shutdown highlighted challenges related to the availability, timing, and tone of communications between participants and SNAP agencies. Participants recommended that SNAP adjust benefit and eligibility levels to better address costs of living, improve customer service, and avoid future disruptions.

Type 1 diabetes through two lenses: comparing adolescent and parental perspectives with photovoice.

BACKGROUND: 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. METHODS: 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). RESULTS: 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. CONCLUSIONS: 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.

Puppy Love, Adolescence, and Chronic Illness: The Importance of Pets for Youth with Type 1 Diabetes.

The benefits of animal-companion ties to well-being are consistently documented, yet few studies use patient-centered methodologies to examine how youth living with chronic illnesses rely on domestic pets for support. Youth with type 1 diabetes (T1D) aged 12 to 19 years (N=40) completed surveys involving a prompt to take five photos of "what diabetes means to you," with an accompanying narrative. Content analysis was conducted for photos/narratives and numeric variables analyzed including socio-economic status (SES: measured by total household income and years of parental education) and HbA1C. More than half of the youth participants took pictures of coping mechanisms, including pictures of their pets. In fact, pictures of pets outnumbered pictures of people three to one. Pet depictions were captured by youth from all SES levels. Youth with T1D identify pets as an important source of support. More research is needed to understand how pets may offset disease burden for youth with T1D.