Photo: Jawhar Cottage Rural Hospital (rural community-based palliative care centre)
Arun Ghoshal, a physician working in the Department of Palliative Medicine at Tata Memorial Hospital in Mumbai, has provided ehospice with information about a recently published research study entitled: Impact of education training in improving skills, practice, attitude and knowledge of healthcare workers in Pediatric Palliative Care: Children’s Palliative Care project in the Indian state of Maharashtra. The paper was authored by Arunangshu Ghoshal, Pradnya Talawadekar, Anil Palleri, Joan Marston and Mary Ann Muckaden and was published in the Indian Journal of Palliative Care. The study provides insight into the prevailing practice of paediatric palliative care among the health-care workers who participated in the survey and suggests practical ways to improve it.
Children’s Palliative Care Project
In India, it is estimated that 1 out of 10 children with cancer, 1 out of 2 children with cerebral palsy, 1 out of 7 with human immunodeficiency virus, 1 out of 10 with thalassemia, and 1 out of 5 with neurodegenerative disorders will need palliative care at any point of time. Most children with advancing diseases are cared for by local general practitioners who are graduates in medicine/surgery and have not received specialised clinical training in paediatrics.
The “Children’s Palliative Care Project” was initiated in October 2010 in the Indian state of Maharashtra with a view to improve the quality of life of children with life-limiting conditions.
It was mentored and guided through several organisations including Hospice UK, the International Children’s Palliative Care Network (ICPCN) and Tata Memorial Centre (Mumbai) with funding from the Department for International Development, UK. The project was focused on the development of three model sites in Maharashtra based on the model of children’s palliative care already being provided at Tata Memorial Hospital.
The trainers were mostly specialists in paediatrics, palliative medicine, nurse educators, and social workers from academic institutions. The experience and the data gained through these centres were shared with the policymakers to advocate the need for Paediatric Palliative Care in India.
Pre and post training survey
This 5-year project was concluded in March 2015. A questionnaire-based research study was done to evaluate its education and training component. It was a cross-sectional survey carried out pre-/post-training among 258 doctors, nurses, social workers, and counselors at the three sites in Maharashtra in March 2015. An advisory group comprising palliative care specialists, paediatricians and lay members of the public and health workers with extensive experience in community health programmes in the target centres was formed to develop the questionnaire. The questionnaire comprised 25 questions. An opportunity was provided at the end of the questionnaire for participants to provide spontaneous feedback. All respondents were given the option of being anonymous, with the aim of encouraging participation and truthful feedback.
Descriptive statistics were used for data analysis.
Responses were gathered from a total of 62 (24.03%) participants (out of 258) approached for the study – 17 men and 45 women. 33 were doctors, 18 were nurses, whereas 11 were social workers and counselors (others).
73% of the doctors felt that the training provided to them under the CPC project had empowered them with the knowledge to provide palliative care to children. 88% felt that their skills about pain and symptom management have improved after the training. 24% doctors said that their knowledge of pain management has improved extensively while 73% reported a moderate improvement. For symptom management, 49% felt that their knowledge had improved extensively, while it was reported to be moderately improved by 48%. 70% expressed that CPC can improve quality of patient care by networking with all the facilities such as hospices, home care, video conferencing, networking with local physicians, and nongovernmental organizations.
83% of the nurses felt that with the training provided to them, they now have the knowledge to provide palliative care to children. Furthermore, 88% felt that their skills about pain and symptom management have improved after the training. All of the others felt that with the training provided to them, they were better equipped to provide palliative care to children. All of them felt equipped to handle the pressures of pediatric palliative care and 64% were completely confident about their ability post training. An astounding 50% of others stated that education about bereavement in children is not provided to the staff of their organisation. 100% of them wanted to work in providing palliative care for children.
In conclusion, the majority of respondents felt that the training provided to them under CPC project has empowered them with the knowledge to provide palliative care to children. Participants advocated using morphine only when other analgesics fail and had many constructive opinions for better availability of palliative care to needy children and their families.
Arun writes, “This paper is a part of the work done in paediatric palliative care in Maharashtra between 2010-15. We are in process of writing up about the project— stay tuned for more updates!”
The full research study has been published in the Indian Journal of Palliative Care (IJPC) and can be accessed here.