Globally, more than 21 million children need palliative care each year. 98% of these children live in low- and middle-income countries, where access to palliative care is very limited. South and Southeast Asia is home to 25% of the world’s population and it is estimated that 19.5% of children globally who need palliative care live in the region, however many of these children are unable to access this essential care. There is therefore an urgent need to develop leaders in children’s palliative care who can lead and champion the development of services to support the needs of children with life-limiting and life-threatening conditions and their families.
The Children’s Palliative Care Leadership Institute is an innovative new training programme bringing together a diverse group of emerging healthcare leaders from nursing, medicine and allied health fields and seeks to equip them to lead and champion healthcare innovations in children’s palliative care within the region. The programme is a joint initiative of Two Worlds Cancer Collaboration (TWCC), Pain Relief and Palliative Care Society (PRPCS), St Jude Global Palliative Care, Canuck Place Children’s Hospice, Cipla Foundation, Stanford University, and the International Children’s Palliative Care Network (ICPCN)
This one-year programme, hosted by PRPCS, includes monthly online teaching and discussions with regional and international experts and leaders, a specialised leadership workshop in Hyderabad, India, and mentoring and connection to established leaders in children’s palliative care.
On Monday 5th February 2024 leadership scholars and faculty members began arriving in Hyderabad, and they were able to visit the Mandara Hospice. During their visit to the hospice, they met all of the paediatric palliative care teamsof the PRPCS, including:
- Home care (3 vans), with teams consisting of nurse, counsellor and driver
- Hospital-based care (at MNJ Institute of Oncology and Niloufer Hospital), including doctor, nurses and counsellor
- Mandara Hospice, which can accommodate up to 10 children and their family caregivers
- 4 Doctors and 1 physiotherapist are shared between all of these programs, providing coordinated and comprehensive palliative care support
On Tuesday Feb 6, the official workshop program began, with a moving opening ceremony facilitated by Dr Gayatri Palat (PRPCS) with Guest of Honour, Dr Manjula Bhagavatula (PRPCS). This set the scene for an inspiring and participatory day. Scholars have been asked to ‘journal’ -recording their thoughts, feelings, lessons learnt, and other key points throughout the course of the programme. They were also asked to write down their leadership journey, some of which will be discussed on Wednesday.
Following introductions, Prof Gayatri Palat challenged participants to discover the essence of true leadership, to reflect on leaders that they have known, and think about what made them leaders. She shared the 5 practices of exemplary leaders: modelling the way, inspiring a vision, Challenging the process, enabling others to act and encouraging others to act. This theme was developed further by Dr Michael McNeil (St Jude Global) who encouraged them to nurture their personal leadership skills and reflect on their own skills as leaders. After break Prof Justin Baker (Stanford University) continued to help the fellows to explore their own strengths and how they can build on these.
As part of the leadership programme all fellows are required to undertake a leadership project. Initial ideas and concepts had been submitted to the faculty prior to the workshop and Dr Megan Doherty (TWCC) discussed these projects with the scholars, and then they worked on preparing a short ‘elevator pitch’ about their project which they will record on their phones overnight and will be shared tomorrow.
We were privileged to have Anurag Mishra from the Cipla Foundation in Mumbai join us for the afternoon and so Prof Gayatri led a panel on how to be successful in fundraising with with Mr Anurag Mishra (Cipla), Mr Jagganath (PRPCS), and Prof Julia Downing (ICPCN). Fellows were encouraged to ask questions of the panellists who then shared some of the lessons they have learnt through writing, receiving, and awarding grants. Finally Dr Spandana Rayala (TWCC) led a session on project planning, stakeholder mapping and risk mitigation, where she encouraged fellows to think about who are the stakeholders for their projects, who has high or low power, along with those those with low or high interest. This work is ongoing and participants were encouraged to think carefully about this as it can impact the success of their projects.
Following a final reflection on the day, fellows and faculty went off to think about their leadership journey and prepare themselves for a networking and celebratory dinner. After the first day Dr Megan Doherty said “We have had a fantastic day together, there has been so much learning, networking, and sharing. I am truly inspired to be in a room full of people who have such big dreams for children’s palliative care. In total with all of the project which leadership scholars are planning to complete this year, we estimate that we will reach almost 150,000 children, siblings and parents.”