Preference and Perception of Indian Caregivers Towards Formal Long–Term Supportive Services – A Mixed–Methods Study

Abstract

AbstractPurpose of the StudyIn India, the rate of population aging, the greater burden of chronic disease-related care, and smaller families question the sustainability of traditional family based, home long term support and services (LTSS). However, little is still known about Indians’ perception of formal LTSS.Design and MethodsA mixed-methods design of family caregivers for older adults from Jodhpur, Rajasthan (n=30 in-depth interviews; n=100 quantitative survey). Inductive qualitative data analysis identified emergent themes about perceptions of either informal or formal LTSS. Caregivers self-reported which common LTSS they needed in a quantitative survey. Multivariable Poisson and logistic regression models were used to estimate the average total number of LTSS and probabilities of self reporting wanting individual LTSS, respectively.ResultsThe central theme was a negative perception of formal LTSS, especially the idea of paid helpers. A second theme served as the rationale for the first theme: caregivers reported a “duty” to provide care to one’s family that “others” and those “doing it for money” could not meet. Caregivers reported on average 2.8 LTSS needs of 10 options. Formal LTSS, like home-health care assistance with instrumental activities of daily living, were least frequently reported; caregiver education and self-care activities were the most reported.ImplicationsDespite providing intensive amounts of informal LTSS and care for their family members, Indian caregivers consistently reported disinterest in using formal LTSS alternatives in qualitative and quantitative data. Caregivers reported a stronger desire for services that support their ability to carry out their caregiving roles.