Experiences of Volunteers and Patient Satisfaction in Home Based Palliative Care, Puducherry, South India—A Descriptive Qualitative Study

Abstract

Context: Increasing burden of non-communicable diseases and ageing population has parallely increased the need for Palliative care. Unavailable, inaccessible, and inadequate palliative care services in our setting increased the need for volunteers. In Puducherry, palliative care programme was implemented through trained volunteers in 2015. Aims: To explore the experiences of volunteers who provide palliative care and also to get feedback on volunteering from the patients who received care. Settings and Design: A descriptive qualitative study was carried out at two Non-Governmental Organizations (NGO) working for palliative care in and around Puducherry. Methods and Material: Participants were selected purposively to include seven volunteers and eight patients to attain information saturation. The time period of this study was between September and October 2018. Analysis Used: Manual thematic analysis was done to identify codes, which were grouped to form categories and themes. Results: Factors that facilitated participants to take up the role of volunteers were witnessing the death of family members with unmet palliative care when required and experiences in organizations working for elderly and disabled children. Improvement in patients’ condition and patient satisfaction motivated them to continue, despite lack of resources and social support. Their perception was of having become bolder and empathetic by working as palliative care volunteers. Patients reported satisfaction with the provision of drugs and other materialistic support like clothes and sweets during festivals; however, their basic and financial needs remained unmet. Conclusion: The palliative care programme or the National programme for elderly should focus on components that would improve the quality of palliative care by reducing patients’ dissatisfaction. Support in terms of provision of drugs, financial help and nutrition is necessary to improve both the patients’ and volunteers’ satisfaction in palliative care services.

The effectiveness of community-based palliative care programme components: a systematic review

“…Almost all reported overall positive experiences of volunteer involvement within programmes from the perspective of the volunteers [ 44–48 ], the patient/caregivers [ 45–50 ] and involved medical professionals [ 51 , 52 ]. One study from India highlighted mixed results of volunteer interactions from the patient’s perspective noting that patient dissatisfaction might result from other barriers preventing volunteer success [ 48 ].…”

“…Our review highlights the dearth of studies examining the effectiveness of programme components in lower-income countries. Of the 57 studies reviewed, 55 were from high-income countries, one from an upper-middle-income country (South Africa) [ 31 ] and one from a lower-middle-income country (India) [ 48 ]. The two studies that were not from high-income countries were qualitative.…”

Beneficiary’s Satisfaction with Primary Palliative Care Services in Kerala – A Cross-Sectional Survey

“…According to Subramanian et al ., individuals receiving PC exhibited unmet demands for financial assistance and drug supply. [ 12 ]…”

“…Still, most of them were conducted in Community-Based Organisations, thus resulting in a dearth of literature regarding potential ways to improve the Government’s HC Programme. [ 12 ] This study attempted to assess the satisfaction of beneficiaries receiving HC services through the Kerala State PC programme and its associated factors. This could aid in translating study implications into policy actions in the context of the new PC policy action plan, which is currently being drafted.…”