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A Caregiver Study

PALCARE appreciates the important role that caregivers play in looking after patients who have a serious life limiting condition. Together with the Tata Institute of Social Sciences it set out to examine how best the PALCARE service can help caregivers

Because of the nature of the condition of patients who need palliative care, and the limited medical facilities available at home, in contrast to those available at a multispecialty hospital, the strain on caregivers can sometimes be quite humongous. Therefore, it is common to come across caregiver fatigue, stress and burn-out, and these are very real issues that confront persons tasked with caring for a patient with a life-limiting conditions – be it a relative or friend or as part of a paid job.

Through the extensive first-hand experiences that the PALCARE team has faced from the over 1000 caregivers it has interacted with since the inception of the service, PALCARE has had adequate opportunity to make observations of its own on the challenges that caregivers face. However, PALCARE felt the need to scientifically and systematically identify and pinpoint these challenges through a robust and well investigated study, conducted by a respected institution; and not depend on subjective observations alone.

The research outcomes will be used to design caregiver programmes that supplement existing home-based palliative care services in the city of Mumbai. PALCARE will seek to find solutions to not only alleviate those identified hurdles but to also find ways to educate, empower and encourage caregivers so that they may be more effective and of greater assistance to the medical team – both in terms of the patient’s physical ailments as also the psychosocial/spiritual aspect

Moreover, today, caregivers are not given sufficient recognition for the vital role they play; the PALCARE caregiver programme will try to correct that.

PALCARE also realised that it was imperative that the study be conducted by an unbiased, respectable and experienced institution such as Tata Institute of Social Sciences (TISS) – so that the study would be accurate and credible. Hence, it invited Professor Asha Banu Soletti and Ms. Aneka Paul from the School of Social Work, TISS for the proposed research study.

TISS was established in 1936 and through its extensive research over the years in social work, social sciences, health systems and allied fields, has made consistent contributions to civil society and the development sector while helping to shape planning, policy and programme foundation, foster critical rethinking as well as the development of people-centered interventions. The research work carried out at TISS has been increasingly used for capacity building, field action, academics and policy advocacy on a spectrum of social, economic and environmental issues.