Evaluation of Parent Diabetes Distress Among the Parents of Teens with Type 1 Diabetes Mellitus in India

Raising a teen with type 1 diabetes mellitus (T1DM) can be challenging. Parents may experience many burdens and worries including conflicts with their teens about T1DM management. Some studies have documented elevated emotional distress among parents, leading to poor health outcomes for both parents and their T1DM children, but there is paucity of such data in India. The aim was to evaluate the Parent Diabetes Distress (Parent DD) among the parents of teens with Type 1 Diabetes Mellitus in India.

Methods:

The participants were 120 parents having a teen age child (age 12 to 19 years) having T1DM for 1 year or more. A health care assistant explained and helped the parents to complete the Parent Diabetes Distress Scale (PDDS). PDDS is a 20 items questionnaire, having response options for each item on a 5-point scale from 0 (not at all) to 4 (a great deal). The scale has four areas of DD for parents (1) parents’ own personal distress, (2) distress about their teen’s T1D management, (3) distress about their relationship with their teen and (4) distress about their teen’s health care team. Overall score < 2.0 indicates little or no distress, ≥ 2.0 to 2.9- moderate distress, and ≥ 3.0 - high distress. Data analysis used SPSS and p< 0.005 was significant.

Results:

Out of 120 participants 69 were mothers and 51 were fathers of teens with T1DM. All parents were educated (12th grade or more). Mean age of the parents was 40.4 ± 10.8 years. Mean age of teens was 15.3 ± 3.5 years. 63.3% of parents had significant Parent DD, with moderate distress in 40.8% and high distress in 22.5%. Mean total Parent DD score was 2.48 ± 1.28. Mean score was higher in mothers (2.71 ± 0.77) than in fathers (2.21 ± 0.82) (p-0.01). Means for Personal, management related, relationship related and health care team related distress were (2.59 ± 0.64), (1.96 ± 0.85), (1.81 ± 0.78), (1.28 ± 0.74) respectively. Distress score had co-relation with HbA1c levels, hypoglycaemia events but not with insulin regimen, duration of diabetes or sex of teen.

Discussion/Conclusion:

Being the parent of a child with a chronic illness like T1DM can be a daring task. As the disagreements over independence and responsibilities grow over the teen years, parents may also experience stress. We have found that parent DD is relatively common in India, with 63.3% of parents acknowledging the presence of moderate or high distress as in other countries. Parent DD is more in mothers and the personal distress is more profound. Results of our study endorse the promising psychometric properties for the PDDS. The PDDS can be used in clinical settings to explore the lacunae in the areas of personal, family and parenting contexts which may need to be addressed to enhance parent well- being, modify parenting style and improve diabetes management outcomes in teens.