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Original research
Importance of parental involvement in paediatric palliative care in Hong Kong: qualitative case study
  1. Frances Kam Yuet Wong1,
  2. Jacqueline Mei Chi Ho1,
  3. Tsz Chui Lai1,
  4. Lilian Po Yee Lee2,
  5. Eva Ka Yan Ho1,
  6. Susanna Wai Yee Lee3,
  7. Stephan C W Chan4,
  8. Cheuk Wing Fung5,
  9. Assunta Chi Hang Ho6,
  10. Chak-Ho Li7,
  11. Chi Kong Li6,
  12. Annie Ting Gee Chiu5,
  13. Kwing Wan Tsui8,
  14. Katherine Ka Wai Lam1
  1. 1 School of Nursing, The Hong Kong Polytechnic University, Kowloon, Hong Kong
  2. 2 Department of Paediatrics and Adolescent Medicine, United Christian Hospital, Kowloon, Hong Kong
  3. 3 Nursing Administrative Office, Hong Kong Baptist Hospital, Kowloon, Hong Kong
  4. 4 Department of Paediatrics and Adolescent Medicine, Pamela Youde Nethersole Eastern Hospital, Hong Kong, Hong Kong
  5. 5 Department of Paediatrics and Adolescent Medicine, Hong Kong Children's Hospital, Kowloon, Hong Kong
  6. 6 Department of Paediatrics, CUHK Faculty of Medicine, Shatin, Hong Kong
  7. 7 Paediatrics and Adolescent Medicine, Tuen Mun Hospital, Tuen Mun, Hong Kong
  8. 8 Department of Paediatrics and Adolescent Medicine, Alice Ho Miu Ling Nethersole Hospital, Tai Po, Hong Kong
  1. Correspondence to Professor Frances Kam Yuet Wong, School of Nursing, The Hong Kong Polytechnic University, Kowloon, Hong Kong; frances.wong{at}polyu.edu.hk

Abstract

Objective To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers.

Design A qualitative case study method using semistructured interviews was employed with a within-case and across-case analysis. Themes and subthemes emerging from the cases were compared and contrasted in the across-case analysis to explore the similarities and variations in participant perceptions.

Setting/participants The setting was the paediatric departments of five regional hospitals in Hong Kong. Twenty-five sets of informants (CLLC–parent–healthcare provider) were recruited, with 65 individual interviews conducted.

Results A total of 3784 units of analysis were identified, resulting in three themes with subthemes. ‘Living with the disease’ (55.8%) occupied the largest proportion, followed by ‘information and understanding about the disease’ (27.4%), and ‘care support and palliative care’ (16.8%). Healthcare provider support mainly focused on physical concerns. Family and social support were present, but carer stress created tension between couples. Doctors were the primary source of medical information, but the parents had to seek further information via the internet and support from patient groups. There was a perceived need for better coordination and collaboration of care. The palliative care approach coordinated by nurses was seen as helpful in addressing the care needs of the CLLC.

Conclusions This original study identified the importance of palliative care with active engagement of parents which can address the service gap for CLLC.

  • palliative care
  • child health
  • nursing
  • paediatrics

Data availability statement

Data are available upon reasonable request.

https://doi.org/10.1136/archdischild-2023-325810

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    Data availability statement

    Data are available upon reasonable request.

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    Footnotes

    • Contributors Conceptualisation and design—FKYW, JMCH, TCL, KKWL and EKYH. Recruitment—LPYL, SCWC, CWF, ACHH, C-HL, CKL, ATGC and KWT. Data collection—JMCH and TCL. Data analysis and interpretation—FKYW, JMCH, TCL, KKWL and EKYH. Manuscript preparation—FKYW. Manuscript review and approval—all authors. Guarantor—FKYW.

    • Funding This work was supported by Health and Medical Research Fund, Food and Health Bureau, Hong Kong (grant number 16172581).

    • Competing interests None declared.

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

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.