GES Coffee Hour, Friday 2-19 || Greta Friedeman-Sanchez: Parents Caring for Children with Type 1 Diabetes in India: Caregiving Context and Outcomes

Parents Caring for Children with Type 1 Diabetes in India:
Caregiving Context and Outcomes

Greta Friedeman-Sanchez (bio)

Humphrey School of Public Affairs, UMN

Date:   Friday, February 19th
Time:   3:15 for complimentary refreshments and coffee

            3:30 for the talk

Place:  Blegen Hall 445

Series: Department of Geography, Environment and Society Coffee Hour

Abstract:

Type 1 Diabetes (T1D) is the world’s most common chronic, non-communicable childhood disease. Although the US and India have similar diabetes prevalence rates, the absolute number of people with T1D in India is 3-times higher. T1D requires complex daily support and insulin for survival.  Thus, T1D management depends not only on clinical care, but on family caregivers’ individual, social and instrumental resources. Caregivers, the majority who are mothers, if employed, may quit work to provide care, especially if their child is young, or miss workdays to take their child to the doctor. Rural caregivers face large transportations costs to clinics. Although T1D may render poor families into chronic destitution, there is little evidence of the direct, indirect and opportunity costs of caregiving for T1D in developing countries, India included. In sum, caregivers may have fewer resources to care with, face large financial costs and have negative health. Although the experience of caring for a child with a chronic illness is well-documented in the US, evidence from high-income countries likely does not generalize to less-resourced settings like India.

In this research seminar I will present preliminary data on an ongoing based on 29 semi-structured interviews with caregivers of children with T1D in Nagpur, India. The study aims explore and characterize the caregiving context, barriers and facilitators to T1D care including caregivers social and instrumental resources, and financial and health outcomes of caregiving for parents of children with T1D. Results detail the barriers to care faced by parents which begin at diagnosis time and are experienced in all caregiving contexts. Low levels of education amplify difficulties managing the illness.  Social undermining and stigma is experiences in the extended family, social networks, and at the children’s school. In addition families face large financial costs, even when basic clinical care is provided through a charity clinic. Caregivers expressed sadness and anxiety, and adjust to the situation with fertility decisions. Families who have girlswith diabetes may hide their condition in order to keep them within the marriageable pool. Policy implications will be discussed.

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