Introduction

Caregivers of medically complex paediatric patients often experience significant psychological burden, especially in Chinese society where ‘end-of-life’ is often a taboo subject. Providing adequate psychosocial support for caregivers is crucial, with previous studies showing that they are at risk of becoming financially disadvantaged and socially isolated and typically have very limited access to death-related and bereavement-related information.1

In Hong Kong, the public healthcare system collaborates closely with the non-governmental organisations (NGOs) to provide holistic palliative care for paediatric patients and their families. In 2019, the Hong Kong Sheng Kung Hui Welfare Limited, a local NGO, launched the Jockey Club Community Paediatric Palliative Care Programme (JCPPC).2 The JCPPC is one of the largest community-based, territory-wide palliative care programmes for children in Hong Kong. Since June 2021, this programme has been providing evidence-based, multidisciplinary palliative services for medically complex children in line with the literature and international guidelines (figure 1).3 Eligible medically complex children were referred by either the paediatric palliative care teams of five local public hospitals in Hong Kong, special or hospital schools, other NGOs/local religious institutes, or by self-referral. During the project period (2019–2022), 368 family members participated in >200 family activities and wish fulfilment, such as outings and virtual music therapy classes (during the pandemic). It also organised 28 mutual support groups for 128 family members to build up mutual support for caregivers of children with similar life-limiting conditions, as well as bereaved caregivers. More than 100 advanced …