Patient and Carer Understandings and Experiences of Living With Type 2 Diabetes in India

The prevalence of type 2 diabetes (T2D) is rapidly increasing in India. Evidence suggests that adherence to both pharmacological and nonpharmacological treatment regimens combined with support from carers may help in the optimal management of T2D. However, adherence to treatment and the role of carers is not clearly understood in the management of T2D in India.

To explore the perceptions of people living with T2D and the role of carers in the management of T2D.

Semi-structured face-to-face interviews were conducted with people living with T2D in Mysuru, India, and their carers. A total of 22 participants were included, of which 12 were supported by carers. All interviews were conducted in the participant's home, were audio recorded, transcribed verbatim and thematically analyzed.

Two themes were identified (a) the illness journey of people living with T2D; (b) the role of carers in supporting the illness journey of their family members living with T2D. The beliefs and perceptions of people living with T2D impacted their adherence to T2D management. Lack of rapport and open-ended discussions regarding medication use with doctors are some factors that contributed to self-medication practices. In addition, there was little trust towards Western medicines, thereby increasing self-medication of traditional medicines. Carers provided support to their family members in managing T2D, however perceived a sense of powerlessness in their ability to effectively provide support for the management of the disease.

Participants reported non-adherence to the T2D treatment regimen prescribed by their doctor despite support from carers. There were multiple individual and systemic factors that encouraged self-medication for people living with T2D. Strategies to garner trust between doctors and patients as well as inclusion of carers during consultations should be considered. This may allow for more open communication and disclosure of self-medicating and use of traditional forms of medicine.

Participants were interviewed by one researcher and contributed to recruitment of additional participants through snowball referral. Participation in the study was voluntary and no financial compensation was provided. Participants also provided feedback to the researcher by reviewing their own interview transcript to ensure clarity.