Diabetes distress in Indian children with type 1 diabetes mellitus and their mothers

Introduction

According to the International Diabetes Federation 2015 report, India has the second-largest population of children living with type 1 diabetes mellitus (T1DM) [1]. The average prevalence of T1DM in India is believed to be 10.2 cases/100,000 children [2]. T1DM is a chronic disorder, where, not only the affected individuals, but also their families are involved in daily care of the child [3]. Diabetes care in children aims to provide a good quality of life and optimal metabolic control so as to minimize complications.

The recommended treatment regimens for T1DM are quite complex and challenging and require monitoring of blood glucose concentrations and carbohydrate intake, insulin administration and modifying insulin doses to match diet and activity patterns [4]. Compliance with such intensive treatment is likely to be stressful and result in distress for children and adolescents with T1DM as well as for their caregivers [5].

Distress specific to diabetes (“diabetes-specific distress”) is defined as negative emotional responses to the diagnosis or burden of diabetes, or “worries, problems, and fears” [6], [, 7]. Reports suggest that mothers of children with T1DM have elevated stress due to the management of their child’s illness [8]. Also, during adolescence, developing autonomy and new peer relationships result in conflict with parents in relation to diabetes care [9]. Treatment compliance and parental monitoring for diabetes management thus declines [10, 11]. This is especially worrisome as adolescents with T1DM commonly face high levels of diabetes-specific distress (DD) [12], [13], [14].

Parental stress is believed to result from daily diabetes-related tasks, financial problems, managing blood glucose fluctuations, and very often, guilt and fear of future medical complications [15], [, 16]. If parents feel distressed or overburdened, they may prematurely transfer the responsibility of diabetes management to their child, leading to poor control. Thus, the parental burden is an important construct for Assessment and intervention in children and adolescents with diabetes [16], [, 17]; further, DD in parents has been shown to impact patient health outcomes [18], [19], [20], [21].

DD may be assessed using a questionnaire-based tool known as Problem Areas in Diabetes Survey (PAID) [3], which was first created and validated in the 1990s to measure and assess diabetes-related burden in adults with diabetes. Different applications of the PAID have been created and validated for use in the pediatric population; the PAID-Parent Revised survey (PAID-PR) [22] assesses diabetes-related burden in parents, while, the Pediatric PAID (PAID-Peds) is a companion to the PAID-PR for use in younger patients as well as teens, spanning the age group of 8–17 years [23].

The ISPAD Consensus Guideline since 2000 [24] states that “Psychosocial factors are the most important influences affecting the care and management of diabetes”, making it imperative to assess Diabetes Distress in children and adolescents as well as their parents for improved management of T1DM. Very little research has been conducted to evaluate psychosocial distress in Indian children and adolescents with T1DM and their parents.

Therefore, the aims of our study were (1) to assess diabetes-specific distress perceived by children and adolescents with T1DM and their mothers and to study association of diabetes distress between children and mothers. (2) To study the association of diabetes distress with glycemic control and disease duration.

Methods

Results

A total of 110 children were on basal-bolus regimen in the age group of 8–18 years. Of these 25 children who had associated disorders (hypothyroidism, polyendocrinopathy, celiac disease, intellectual disability, were syndromic or had associated exocrine pancreatic deficiency), parents of six children were illiterate, data were incomplete on five children, and three children refused to participate in the study. Hence, the final analysis was performed on 67 children (32 males and 35 females) and their mothers. The mean age of the children/adolescents with T1DM was 13.8 ± 3 years, and the mean disease duration of the study population was 5.3 ± 3.7 years. Children belonged to lower/middle socioeconomic class as per classification by Kuppuswami, and most parents (85%) had an education of less than 10 years [26]. Fifty-two percent of the mothers were homemakers, while 48% worked as maids or as daily wage laborer; there were no single mothers in the study group.

The mean HbA1c of the population at the time of the study was 11.1 ± 2.3%; mean number of visits to the diabetes clinic was 8 ± 3 over the past year. The frequency of DKA episodes was 0.0148 per 100 patient years over the past one year. The incidence of hypoglycemia was 0.384 episodes per 100 patient-years. The profile of children with diabetes is illustrated in Table 1.

Analysis of the frequency of problems in PAID-Peds and PAID-PR subdimensions

While analyzing the subdimensions, it was observed that higher frequency of a somewhat serious/serious problem (defined as score of 3 or more) was reported in the treatment-related subdimension of the child as well as the parent. No or minor problem was mostly observed for the social support subdimension of child and parent (Figure 1).

Figure 1:

Frequency (%) on Likert scale in subdimensions of PAID-Peds and PAID-PR.

At least one somewhat serious/serious problem (score of 3 or more) was reported among 56 (83.6%) children. The most common problems were feeling upset when blood sugars were out of range (58.2%), feeling discouraged with their diabetes treatment plan (40.3%) and feeling alone with diabetes (31.4%). Fifty-seven (85%) mothers reported at least one somewhat serious/serious problem. The most common problems among mothers were: they felt discouraged with their child’s diabetes treatment plan (56.7%), felt scared when thinking about their child having/living with diabetes (41.8%), felt angry when they thought about their child having/living with diabetes (29.9%) and felt “burned out” by the constant effort to manage diabetes (29.9%) (Supplementary Table).

On the other hand, the items that were perceived as less distressing (scores of 0 or 1) by children were—feeling that he/she is excluded from activities or events because of diabetes (98.5%), feeling that their friends and family are not supportive of diabetes management efforts (82.6%) and feeling constantly worried about food and eating (82.6%). Similarly, mothers found less distressing-feeling like she was a “diabetes police” (83.6%), that other family members were not supportive of managing her child’s diabetes (82.1%) and that her child was excluded from activities/events because of his/her diabetes (80.6%) (Supplementary Table).

Discussion

We observed that the mean diabetes distress score was significantly higher in mothers than in the children/adolescents with diabetes. PAID-Peds had a significant correlation with HbA1c and frequency of hypoglycemic episodes. HbA1c had a positive relationship with diabetes-related emotional problem subdimension, whereas the frequency of hypoglycemic episodes had a negative correlation with treatment-related subdimension in the PAID-Peds score. There was a positive correlation of food-related problems, diabetes-related emotional problems, and treatment-related subdimension of mother and child. The maximum frequency of somewhat serious/serious problem was reported in the treatment subdimension of the child as well as the mum.

To the best of our knowledge, ours is the first study from India reporting diabetes distress in children with T1DM and their mothers; we also report data on subdimensions of the PAID scale, which have not been previously reported. Our results of higher diabetes distress in mothers and the relationship of higher distress in children/adolescents with poor metabolic control have important clinical implications for management of children and adolescents with diabetes. Our study highlights the importance of evaluation for diabetes distress (and its subdimensions) in the management of children/adolescents with diabetes as well as in their mothers.

We observed a significant positive correlation of HbA1c with the PAID-Peds score; this has also been reported by Weissberg–Benchell et al. using the PAID-T scale [24]. However, higher distress was noted in our population as compared to other studies [33]. This possibly was due to differences in HbA1c concentrations which were higher in our population (8.0 ± 0.9 vs. 11.1 ± 2.3). Also, socioeconomic and cultural differences may influence both HbA1c and stress levels [34]. Stress (including diabetic distress) may affect metabolic control (HbA1c) directly through the physiologic changes that occur within the body, e.g. by increasing hepatic glycogen production and insulin resistance [35] and indirectly by interfering with an individual’s ability to adhere to diabetes regimens [36], [, 37].

Parents have been reported to have significantly higher distress than children as reported by Law et al. [38] and Frazier et al. [32], a finding similar to our study. Proposed reasons for higher stress among parents compared to the child include the fact that parents are more aware of the high level of commitment required for effective management of T1DM [39]. This adds to a parent’s individual coping, parenting stress, and efforts to balance family dynamics [40].

A positive correlation of mother’s distress with diabetes distress in children is reported in previous studies [23], [32], [38]. The greater perceived burden in the children and parents is associated with increased diabetes-specific family conflict and lower quality of life [23]. On the other hand, higher HbA1c, disagreements about diabetes responsibility among parent and child and parents’ perception of reduced adolescent self-efficacy have been reported to predict parental distress [38].

Our subdimension findings are similar to the reports from the adult populations of the Netherlands and the USA, however, no pediatric data were available for comparison [30]. We observed that the treatment-related subdimension had the maximum frequency of serious problem as well as it contributed the highest to diabetes distress in children as well mothers. Treatment of T1DM is complex, additionally, multiple insulin injections at school as well as home, compliance, and support from school teachers, and sick day management may be other contributing factors.

The correlation of diabetes-related emotional problem subdimension with HbA1c and contribution to the higher scores of PAID-Peds could be explained by negative emotions affecting patients’ moods, thoughts, feelings, behavior, and well-being through alterations in circulating glucose levels, which may vary throughout the day. Food-related problems in diabetes are an established subdimension contributing to the PAID score [41], [, 42].

Less distress was observed related to the social support subdimension in both mothers and children, possibly because support groups play an active role in improving complex disorders like diabetes and their outcome [43]. In our multidisciplinary clinics, activities such as support group meetings of children and parents, seminars, and awareness programs about diabetes for newly diagnosed patients, along with their parents, communication skill seminars, and skill enhancement workshops and other activity programs are conducted regularly. Mothers/children and adolescents have an opportunity to interact with counselors at each clinic visit (average eight visits/year, average counseling session at each visit around 30 min) and counseling between clinic appointments is provided telephonically. Young adults with T1DM enroll themselves as volunteers in the above program and help in keeping patients and parents connected and motivated through various social media platforms.

Our limitations include that the study is from a single center. We also assessed the group as a whole and could not (due to the modest sample size) investigate the cause for the diabetes distress. We have not assessed the family conflict that may confound diabetes distress; we also did not collect data on whether the families were nuclear or joint. Further, only mothers were assessed as usually mothers are children’s primary care givers and accompany children to the clinic. Also, the study group is from a supported clinic where children belonging to middle or lower socioeconomic class are enrolled and the impact of socioeconomic status on distress could not be assessed. Further, children being from the middle or lower socioeconomic class, their glycemic control was poor; our cohort may not be representative of children with diabetes from other Indian centers. Hence, more studies on distress with diabetes from different parts of the country involving various socioeconomic strata are required.

Conclusion

Diabetes distress in children with T1DM was higher in mothers as compared to children; higher distress in children was associated with poor metabolic control. Evaluation of diabetes distress with subdimensions (such as diabetes-related emotional problems, treatment-related, food-related, and social support problems) and interventions for diabetes-related distress need to be routinely incorporated into management of children with Diabetes Mellitus for holistic family centered interventions rather than a patient centered approach.