Project Aarohan empowers patients and caregivers to mobilise community
It is encouraging to see recent developments in healthcare move towards patient-centric care. Patient involvement and shared decision making are now increasingly being recognized as the key propeller of healthcare redesign. Taking cognisance of the need for patient and caregiver empowerment in palliative care, Pallium India conceptualised a novel project aptly named ‘Aarohan’ (meaning, to rise) for patients and care-givers. Objective of this project supported by World Hospice and Palliative Care association (WHPCA) is to train and motivate patients suffering from serious health related suffering and their caregivers to network and collaborate with people from their community and champion the cause by catalysing a network of palliative care direct beneficiary advocates.
The project was operational from June 22, 2019 to October 19, 2019. Online trainings were delivered on Saturdays from 3 PM to 4.30 PM. A total of 20 participants were selected from 33 applications. Training sessions were delivered online in partnership with Project ECHO, an international NGO offering tele-mentoring programme across 148 countries.
Participants were offered training on various topics ranging from basic advocacy and communication skills to advance directive by leading subject matter experts. Out of the 20 participants, 3 were patients, 13 caregivers, 1 trans-woman and 3 cancer survivors. The project platform offered a unique opportunity for patients, caregivers and palliative care experts to network and interact on matters concerning issues faced by patients suffering from serious health related suffering and their caregivers.
A post training evaluation found increase in the awareness and skill levels of project participants. Though the formal training sessions are now over; project participants continue to engage the community through awareness sessions, blog posts, patient support groups and stakeholder advocacy. Considering the unprecedented success and overwhelming request from the patient and caregiver fraternity, Pallium India is actively looking for sponsors to conduct the second phase of the project.
Though the seeds of palliative care were sown in India in 1980s, it is still in its developing stage in the country as compared to its western counterparts. Although we made significant strides in human resource, infrastructure, training and capacity building for palliative care, there is a stark paucity of initiatives to empower patients and caregivers. Evidence from around the world suggests that empowering patients and caregivers improve the overall quality of care. There is a need for more such projects and research into patient and caregiver advocacy in palliative care so that it becomes an inevitable chapter of palliative care discourse.