Medical advancements have extended the lifespans of children and adolescents diagnosed with life-limiting conditions, resulting in a greater need for healthcare resources and expanded caregiver services. The Hong Kong Polytechnic University (PolyU) researchers have studied the physical and non-physical needs of patients, parents and healthcare providers to enhance the provision of holistic healthcare services.
The Strategic Service Framework for Paediatric Palliative Care (PPC) developed by Hong Kong’s Hospital Authority (HA) aims to provide comprehensive treatment services from hospital to community care.
Aligning with this framework, a research team led by Prof. Frances Wong Kam-yuet, Chair Professor of Advanced Nursing Practice of the School of Nursing and Associate Dean of the Faculty of Health and Social Science at PolyU and Ms Jacqueline Ho Mei-chi, Assistant Professor of Practice at the School of Nursing at PolyU, conducted a pioneering qualitative study to identify the perceived care needs of children with life-limiting conditions, their parents, and healthcare providers.
Funded by the government under the Health and Medical Research Fund, the team conducted 65 individual interviews between 2019 and 2021 at the paediatric departments under the HA. Twenty-five sets of participants were interviewed, with each set comprising a child or adolescent aged 8-19 with a life-limiting condition, along with their parents and healthcare providers.
The research uncovers the multifaceted needs from children with life-limiting conditions and their parents, which include medical care and daily life support. A holistic approach to coordination and service maintenance, supported by an interdisciplinary team of caregivers and healthcare professionals, is essential for assisting patients and their parents who face complex challenges.
Prof. Wong, Principal Researcher of the study, said, “Paediatric palliative care should include support to those parents giving day-to-day care to their children with life-limiting disease. Parents, sick children, and healthcare professionals are all key members of paediatric palliative care.”
The research titled “Importance of parental involvement in paediatric palliative care in Hong Kong: qualitative case study,” has been published in Archives of Disease in Childhood, which is an official journal of the Royal College of Paediatrics and Child Health. Another study titled “Needs of paediatric patients with life-limiting disease,” was published in the Hong Kong Medical Journal.
Three main themes for PPC are identified in the research as follows:
The first theme, “Information and Understanding about the Disease,” highlights the need for cohesive disease information. Children and parents primarily rely on doctors for information, but they often receive fragmented details from various specialists, complicating their understanding of the disease and its treatment.
The second theme, “Living with the Disease,” reveals the challenges faced by sick children and their parents, encompassing both physical and non-physical aspects of daily living. The different perspectives of children, parents, and healthcare providers also influence how they cope with the disease.
The third theme, “Care Support and Palliative Care,” emphasises the need for better coordination and interpersonal collaboration, especially during the transition from paediatric to adult services. Nurses play a crucial role in coordinating palliative care and facilitating interdisciplinary collaboration.
The research underscores the importance of early intervention in PPC and the increased involvement of parent caregivers. It also highlights the vital role of specialised paediatric nurses in improving the well-being of parents and families, reducing healthcare costs and alleviating social burdens.
