Interplay of Patient, Parents and Healthcare Providers in Paediatric Palliative Care

Advances in medicine have extended the lifespans of children and adolescents diagnosed with life-limiting conditions. An increase in years living with the illness and prolonged duration of care have resulted in a higher demand for healthcare resources and caregiver burden. Studies have shown that these children and their families faced significant stress and challenges. The physical and psychological health of those parents delivering caregiving can be adversely affected, which place a heavy strain on the normal family function. Healthcare professionals, particularly pediatric nurses, play a critical role in providing psychological support to those children and their families and facilitating communication for achieving holistic care. 

The Strategic Service Framework for Paediatric Palliative Care (the Framework) was developed by the Hospital Authority in 2017 to guide the development of adult and paediatric palliative care (PPC) services in Hong Kong, with an aim to provide systematic and comprehensive treatment services for patients with life-limiting conditions from hospital to community. 

In line with the strategic directions of the Framework, the School of Nursing of The Hong Kong Polytechnic University (PolyU), conducted a pioneering qualitative study to identify the perceived care needs of children with life-limiting conditions, their parents and healthcare providers, and compare the perspectives of the children-parents-healthcare providers. 

Led by Prof. Frances WONG , Chair Professor of Advanced Nursing Practice, School of Nursing, and Associate Dean of Faculty of Health and Social Sciences of PolyU; and Ms Jacqueline HO , Assistant Professor of Practice, School of Nursing of PolyU, the research team conducted interviews at the Paediatric Departments* under the Hospital Authority, between 2019 and 2021. 25 sets of participants were interviewed. Each set consists of a child /adolescent aged 8-19, with life-limiting condition, his/her parents and healthcare providers. The team also interviewed 65 individuals. 

The qualitative case study method was used, resulting in a total of 3,784 units of analysis. Among them, 51.8% were from the parents, 23.5% from the children, and 24.7% from the healthcare professionals. The research team identified three main themes: 

(1) “Information and Understanding about the Disease” (contributed to 27.4% of the total units of analysis)-There is a need for disease information, which includes the source of information, the process of communication between the children-parents-healthcare providers, and information for understanding the diagnosis and treatment process. The children and parents expressed that the doctors were their primary source of information, however, they obtained dispersed medical information from different specialists. This made them difficult to  understand their disease and treatment. 

(2) “Living with the Disease” (contributed to 55.8% of the total units of analysis) -The sick children and their parents had to deal with various challenges posed by the disease, which involved physical and non-physical aspects of their daily living. For example, the parents had to learn some specialised nursing skills for caring of their children at home. The children-parents-healthcare providers have different perspectives towards life and this may affect how they live with the disease. 

(3) “Care Support and Palliative Care” (contributed to 16.8% of the total units of analysis)- The interviewees spoke about care support and their understanding on palliative care. They expressed the need for better care coordination and interprofessional collaboration for care delivery, especially in transitioning from paediatric to adult services. Nurses play a major role in coordinating palliative care services and facilitating interdisciplinary collaboration.

This study has revealed the multifaceted needs from the children with life-limiting conditions and their parents, which include medical care and daily life support. It highlights the importance of increased participation of parent caregivers in PPC and  early introduction of PPC. The research team emphasised the crucial roles of specialised pediatric nurses in improving the quality of life for patients and their families, and PPC service in reducing healthcare costs and alleviating social burden.

Prof. Frances Wong, Principal Researcher, 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, healthcare professionals are all key members of paediatric palliative care.”

Dr. CHAN Cheong Wai, Chairman of the Hong Kong Society of Children's Palliative Care, recommended, “Empowering the children and their parents with love, comfort, and dignity, while supporting them throughout the journeys with/by paediatric palliative care.”

Dr. LEE Po Yee, a paediatrician, said, “Pediatric palliative care is not simply about patients’ survival, it is about the quality of life of the patients, their carers and families.”

Ms YUM Wai Lin, a paediatric nurse, said, “In pediatric palliative care delivery, we all need take a step forward and this will make a great change.”

* including Alice Ho Miu Ling Nethersole Hospital, Caritas Medical Centre, Prince of Wales Hospital, Queen Mary Hospital, Tuen Mun Hospital, and United Christian Hospital (listed in no particular order).