In October and November 2020, Rachel House conducted a series of virtual training workshops, as part of the launch of the illustrated handbook entitled “Children Palliative Care: Guidebook for Caregivers”. The handbook and the workshops are both supported by the AVI Community Grant Scheme, with the aim of providing nurses and community health workers with the skills and tools necessary to better support families caring for children living with serious or life-threatening illness at home.
According to the research in the International Journal of Pain and Symptom Management, it is estimated that there are close to 700,000 seriously ill children in Indonesia living with serious pain and suffering who could benefit from palliative care. However, less than one per cent of these children have access to pain relief or palliative care. Presently, there are no children’s palliative care education resources available in Bahasa Indonesia, leaving healthcare professionals and allied healthcare workers with little opportunities to learn about palliative care.
Understanding the critical need for palliative care education resources in Bahasa Indonesia, Rachel House, supported by AVI Community Grant Scheme, decided to publish the first children’s palliative care education resources in Bahasa Indonesia. This illustrated handbook is specifically designed to provide practical help for caregivers (family members or not), who are keen to provide help to support families with children living with life-limiting illnesses, to allow them to have the confidence in undertaking this difficult journey. Rachel House has distributed the book to healthcare providers, community members as well as families, in the hope of improving the lives of the children and their families during this most challenging time of their lives.
With COVID-19, the workshops were converted to the virtual platform, resulting in a much wider reach than originally anticipated. These virtual workshops conducted by Rachel House were successfully attended by 85 palliative care enthusiasts from not only Jabodetabek, but from all over Indonesia, comprising of nurses, social workers, community health-workers and representatives from NGOs. We have received requests for more training sessions to be conducted in the new year.
Rachel House is deeply grateful to be able to partner with AVI Community Grant Scheme, that shares Rachel House’s vision to improve the quality of life for children living with life-limiting illnesses, and their families. Through the “Children Palliative Care: Guidebook for Caregivers” illustrated handbook and the training workshops, we aim to improve the standard of care provided by hospitals to the children and their families; particularly when preparing the children to go home, making sure that nurses know to equip parents and caregivers with the skills and tools necessary in the discharge planning. Through this handbook, we also wish to achieve one of the key goals of our service, that is to help patients’ families provide better care for the children living with serious or life-threatening illness at home, and help relieve their total suffering (emotional, physical and psychosocial).
Together with AVI Community Grant Scheme, we have crossed a milestone in palliative care in Indonesia by publishing the first practical children’s palliative care illustrated handbook for the Indonesian communities of caregivers for children living with serious and terminal illnesses.
Click here to download Children Palliative Care: Guidebook for Caregivers (ebook version).