Future caregiving concerns and plans of parents of adults with mild intellectual disability: A qualitative study from a South Indian tertiary care hospital.

Abstract

Background: Parents of children with intellectual disability (ID) are concerned about the care of their wards after their death or incapacitation. Most literature originates in high-income countries, which have greater resources and distinct cultural and socioeconomic contexts. There is a need for Indian literature.

Aim: To explore the concerns and plans of parents regarding the future of their wards with mild ID when they can no longer care for them.

Methods: The study was conducted in a tertiary care hospital in Bengaluru, India. Both parents of four men and four women with mild ID (referred to as 'ward' from here on) who had future caregiving concerns were interviewed using a semi-structured interview schedule. All 16 interviews were translated and transcribed. Thematic analysis was done using the Braun and Clarke approach. Atlas-Ti software, version 9, was used.

Results: Parents were concerned about identifying a prospective guardian, the ward's safety, and future care. Parental concerns are influenced by individual factors (including the degree of supervision required for daily activities, behavioral problems, and physical health of the ward), parental factors (such as age, physical health of the parents, coping strategies, and awareness about ID), family factors (including sibling relationship and attitude of father), and environmental factors (such as attitude toward the ward with ID and COVID-19). Most parents had a financial plan, preferred to keep guardianship a family affair, and considered residence and occupation/employment after their lifetimes.

Conclusions: Caregiving concerns and plans did not differ between parents. They were influenced by the parents' financial position, how society perceived the ward, independence, and behavioral issues. Parents preferred a family member, usually the neurotypical sibling, as the guardian, but many hadn't explicitly discussed guardianship with them or initiated legal procedures.