Experiences of parents having children diagnosed with T1DM living in Chandigarh: A qualitative exploration
Ramandeep Kaur¹, Anil Kishore Sinha¹, Sanjay Kumar Bhadada², Sandeep Grover³
¹Department of Anthropology, Panjab, University, Chandigarh
²Department of Endocrinology, Post Graduate Institute of Medical Education and Research (PGIMER), Chandigarh.
³Department of Psychiatry, Post Graduate Institute of Medical Education and Research (PGIMER), Chandigarh.
DOI Link :: https://doi-ds.org/doilink/07.2023-34623458/Frontier Anthropology/2023/12/A2
Submitted: January 19, 2023
Accepted: June 12, 2023
Published: July 12, 2023
Frontier Anthropology, 2023, 12: 7-17
©Anthropological Society of Manipur
KEYWORDS Type 1 Diabetes Mellitus, Caregiving experiences, lifestyle, difficulties, management
Introduction: Type 1 Diabetes Mellitus (T1DM) is an autoimmune disorder of the endocrine system, where the body’s immune system attacks insulin-producing cells (beta cells) of the pancreas. As a result, little or no insulin is produced. Insulin is a hormone produced by the pancreas, responsible for regulating glucose in the bloodstream. Hence, daily insulin injections are given to patients who are diagnosed with T1DM. The onset of T1DM at an early age, sometimes as early as an infant age, makes it more challenging and troublesome for the patients and their parents/ families, including hospital visits, insulin administration, and overall management of the disease. It is much more problematic for the parents than it seems. They go through psychological problems, emotional problems, and stress. It affects their day-to-day activities. Their struggles and experiences need to be heard. In the present study, we aimed to explore the experiences of the parents whose children have been living with T1DM.
Methodology: The present study was done on parents of patients diagnosed with T1DM. The parents of the patients who were visiting the Out Patient Department (OPD) of the tertiary care hospital, PGIMER, Chandigarh, for their routine check-ups were contacted. In-depth interviews were conducted with the parents who volunteered for the study. Some interviews were conducted at PGIMER only, and some were conducted at their households according to their convenience. The study was conducted from September 2021 to October 2021 and covered 37 participants after taking informed consent. Most of the responses were qualitative in nature; hence a thematic analysis was done, and narratives were given. Some information, such as demographic characteristics, was analysed using MS Excel and was represented in tabular form.
Results: It was found that T1DM affects the patients and the whole family dynamics. Parents are the worst affected by this. The onset of T1DM brings new challenges to the affected ones’ lives. Once an individual is diagnosed with T1DM, there is no going back. Some learn to live with it, and some keep seeking possible escapes. Even if you learn to live with it, there is constant stress and worries about the child’s future. Parents also indicated that there was a stigma associated with the disease that may cause problems finding a spouse for their child. Parents were observed to be leading stressful lives.
Corresponding Author: Ramandeep Kaur, Research Scholar, Department of Anthropology, Panjab University, Chandigarh, 160014,