Perceptions and meanings of living with Parkinson’s disease: an account of caregivers lived experiences

Purpose: Current study looked into caregiving process of those dealing with family members suffering from Parkinson’s disease, within the changing social milieu in India. It aimed to understand the experiential and existential impact on the lifeworld of caregivers. Method: Narrative interviews of 10 female caregivers referred by neurologists were gathered. Employing Existential Phenomenological Analysis, the caregiver experiences were understood phenomenologically within an existential framework, six themes were generated. Results: Themes were – Becoming a caregiver: Undertaking immeasurable and unrelenting responsibilities; Rising patient-hood of one’s family member: pain of losing the person in the patient; Experience of altered temporality: living in pain with the uncertainty and duration of the disease; Encountering meaninglessness: dwindling faith in principles of life; Existing as a “Being For” and not “Being With”: a caregiver’s self-estrangement and blurring of Identity and lastly Self-Preservation through brief moments of respite: coping with caregiving. Conclusion: The study illuminated how caregiving is experienced by an individual at a process and psychic level by shedding light on the conflicts, concerns and exhaustions endured by them. Adopting an existential approach in healthcare setups can aid in moving closer to felt experiences of these caregivers and in developing integrative and meaningful interventions for enhancing their well-being.