Primary Caregiver Challenges and Experiences of Dealing with Terminally Ill Family Members

Abstract

The role of a caregiver can be challenging and it might impact their physical and psychological well-being. There can be a variety of emotional experiences that primary caregivers might go through, along with a plethora of challenges, ranging from physical (such as burnout or exhaustion), emotional (comprising of hopelessness or despair), mental (like apprehension), financial issues, etc. The main intention of the research is to throw more light on the ‘caregiving’ perspective of looking after a terminally ill patient. Most of the existing work is done in the field of psycho oncology and talks extensively about cancer patients and their caregivers. Contrarily, the present study is among patients suffering across a range of ailments, and hence aims to be inclusive and varied in that aspect. Another unique factor is its novelty in Indian context. Most of the work done previously talks about Asian cultures, but not particularly about the Indian population (Kim et al., 2019) pertaining to the current point of consideration which talks about the younger generation taking up the active role of a caregiver for an elderly terminally ill family member. The caregiving process comprises of ‘filial duty’ of the caregiver towards to the respective ailing individual (Mok et al., 2003). The objective of the current research is to explore the challenges and experiences dealt by the primary caregiver of a terminally ill family member. This work will further facilitate researchers’ insight into caregiver’s perspective while caring for their loved one. An unstructured qualitative interview is conducted among primary caregivers whose family members are suffering from terminal illness. Further, thematic analysis is done to arrive at respective themes of the subsequent research findings. Sample is chosen on the basis of purposive and snowball sampling. The emerging themes that are most likely to be generated from the research are changes in current life situations, compromised self-care, caregiver duties or roles, previous experiences in similar situation, emotional experiences, caregiver burnout, resilience despite discomfort, coping strategies, interpersonal bond affecting caregiving.