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Psychological distress and social support among community paediatric palliative care programme caregivers: longitudinal analysis
  1. Esther Chui Yan Wong1,
  2. Phillip Lung Wai Au-Doung2,
  3. Yvonne Yuen Ling Chu3,
  4. Sandy Sin Yuet Wong1,
  5. Chi Kong Li3,4 and
  6. Yin Ting Cheung2
  1. 1Sheng Kung Hui Holy Carpenter Church Community Centre, Hong Kong Sheng Kung Hui Welfare Council Limited, Hong Kong SAR, People's Republic of China
  2. 2School of Pharmacy, The Chinese University of Hong Kong Faculty of Medicine, Hong Kong SAR, People's Republic of China
  3. 3Department of Paediatrics, The Chinese University of Hong Kong Faculty of Medicine, Hong Kong SAR, People's Republic of China
  4. 4Department of Paediatrics and Adolescent Medicine, The Hong Kong Children’s Hospital, Hong Kong SAR, People's Republic of China
  1. Correspondence to Dr Yin Ting Cheung, School of Pharmacy, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong SAR, People's Republic of China; yinting.cheung{at}

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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 …

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  • ECYW and PLWA-D are joint first authors.

  • Contributors All authors contributed to the study conception and design. Material preparation and data collection were performed by ECYW, YYLC, SSYW and CKL. Data analysis was performed by PLWA-D and YTC. The first draft of the manuscript was written by PLWA-D and YTC. All authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

  • Funding The Jockey Club Community Paediatric Palliative Care Programme is funded by the Hong Kong Jockey Club Charities Trust (Ref number 2022-0134). The funder is not involved in the evaluation, analysis and writing of the final report.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.