Addressing the psychosocial needs of children and families coping with childhood cancer
09 Sep 2022 | Special Delivery
By Dr Beron Tan
KEY POINTS
About 30% of children with cancer and their main caregiving parent report significant psychological distress a year into the cancer journey.
The CCF Psychosocial and Supportive Care Programme for Paediatric Oncology (CCF PSCP) is the first comprehensive support programme for childhood cancer in Singapore. It aims to address the psychosocial needs of children and their families through clinical care, research and education.
The CCF PSCP is organising the upcoming 2nd childhood cancer psychosocial conference in Singapore.
Curated resources on supporting childhood cancer are available on the KKH website.
One of the most painful scenes to witness as healthcare professionals is the tearful and devastated reactions of parents who have just received their child’s cancer diagnosis. This scenario is only a snapshot of what families go through when battling childhood cancer.
Approximately 70 per cent of all childhood cancers in Singapore are managed at KK Women’s and Children’s Hospital (KKH).1 From March 2017 to December 2021, 321 children were diagnosed with childhood cancer at KKH.
Psychosocial needs of children with cancer and their parents
The negative impact of childhood cancer on the child and his or her family is widely known. However, little is known about the specific psychosocial needs of children with cancer and their parents or caregivers in Singapore, and how they cope with childhood cancer. This knowledge gap is the focus of the
CCF Psychosocial and Supportive Care Programme for Paediatric Oncology (CCF PSCP) at KKH, which provides comprehensive care to children with cancer and their families through its clinical, research and education arms. This first-of-its-kind programme is supported by the Children’s Cancer Foundation (CCF).
Clinical
As at May 2022, the CCF PSCP has supported 428 children and their families, facilitating timely and evidence-based neuro-psychosocial, rehabilitative and nutritional care.
Under the CCF PSCP, children diagnosed with cancer and their parents undergo routine neuro-psychosocial screening at various time-points from diagnosis, to treatment and post-treatment (Table 1). These routine screening protocols are based on international gold-standard practices in providing psychosocial care to children with cancer and their families2,3.
Table 1. CCF PSCP routine screening factors and benefits
Routine screening factors
Psychological distress
Health-related quality of life
Cognitive functioning
Physical functioning
Nutritional needs
Benefits
Early identification and support of psychosocial needs of children and/or their parents in the course of childhood cancer.
Early detection of potential risks of neurocognitive late effects, and early intervention and support to ameliorate the negative impact, particularly on academic functioning.
Research
Research4-8 conducted by the CCF PSCP has identified several psychosocial needs specific to children with cancer and their caregivers in Singapore. Some of the notable findings4-6 included:
About 30% of children with cancer and their main caregiving parent reported significant psychological distress, even after a year into the cancer journey.
The relative risks of developing psychological distress were similar in children and parents.
Top difficulties rated by children with cancer included fatigue, feelings of anxiousness/worries, boredom, school and academic difficulties, and family or social relationship problems.
Parents of children with cancer reported ongoing psychological distress from coping with the child’s diagnosis, and the need for interpersonal connectedness and support.
There were moderate-to-large correlations between children’s quality of life and parental distress. Specifically, poor psychosocial functioning in children with cancer was associated with poor psychosocial functioning in their parents, especially for parents with younger children.
Parents supported by the CCF PSCP had significantly lower incidences of psychological distress (4%), compared to parents who had yet to be enrolled in the programme (31%).
Education
The CCF PSCP team facilitates ongoing learning and knowledge exchange activities with other experts through local and international conferences, to keep abreast of the latest developments in paediatric psychosocial-oncology.
Resources to support children with cancer and their caregivers are also made available for caregivers and healthcare professionals below:
Resources for caregivers and healthcare professionals
Visit the
CCF PSCP webpage9 for educational resources on psychosocial wellbeing for children with cancers and their families. Read the
newsletter on:
Coping with caregiver’s and children’s emotions;
Food safety guidelines.
Subscribe to receive psychosocial and supportive care updates via the QR code or weblink below.
Advancing Psychosocial Care in Childhood Cancer: Partnering Through Connections 4 November 2022 (Friday); 8.00am to 4.00pm (via Zoom) Find out the latest local and international research and clinical development in psychosocial care for children and youths with cancer, and their caregivers. This conference is open to healthcare providers, researchers, educators, counsellors and members of the public. Free admission. For more information, please contact the team at pscp@kkh.com.sg.
Dr Beron Tan, Psychologist, Psychology Service, KK Women’s and Children’s Hospital
Dr Beron Tan is a clinician and the research lead for the CCF Psychosocial and Supportive Care Programme (PSCP). Dr Tan developed the research protocols in establishing the CCF PSCP as an evidence-based psychosocial support programme.
Dr Tan is also a research theme lead
(Psychosocial, Preventive, Supportive, and Palliative Care) and an executive member of the KKH Children’s Blood and Cancer Centre (CBCC).
References
Singapore Childhood Cancer Registry. Accurate as at 11 August 2022.
Wiener, L., Kazak, A. E., Noll, R. B., Patenaude, A. F., & Kupst, M. J. (2015). Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue.
Pediatric blood & cancer, 62(S5), S419-S424.
Hudson, M. M., Bhatia, S., Casillas, J., Landier, W., Rogers, Z. R., Allen, C., ... & Wechsler, D. (2021). Long-term Follow-up Care for Childhood, Adolescent, and Young Adult Cancer Survivors.
Pediatrics, 148(3).
Tan, B. W. Z., Teo, L. L. E., Tong, J. W. K., & Chan, M. Y. (2022). The exploration of psychosocial needs among children diagnosed with cancer and their parents in Singapore: A cross-sectional study
Singapore Medical Journal. https://doi.org/10.11622/smedj.2022050
Tan, B. W. Z., Clarke, A., Teo, L. L. E., Tong, J. W. K., & Chan, M. Y. (2020). The parental experiences of caring for children with childhood cancers in Singapore: a pilot focus group study.
Proceedings of Singapore Healthcare, 29(3), 183-189.
Tan, B. W. Z., Teo, L. L. E., Tong, J. W. K., & Chan, M. Y. (2022).
The Effects of Early Screening and Intervention on Psychosocial Outcomes in Singaporean Children with Cancer and their Parents [Manuscript submitted for publication]. Psychology Service, KK Women’s and Children’s Hospital.
Wong, K. C., Tan, B. W. Z., Tong, J. W. K., & Chan, M. Y. (2021). The role of music therapy for children undergoing cancer treatment in Singapore.
Healthcare, 9(1761), 1-9. doi:10.3390/healthcare9121761
Han, W. M., Koo, J. Y. S., Lim, Y. Y., Lyer, P., Ong, C., Tong, J. W. K., & Chan, M. Y. (2020). Implementation of a nutrition screening tool to improve nutritional status of children with cancer in Singapore’s largest paediatric hospital.
British Medical Journal Open Quality, 10:e000944. doi:10.1136/bmjoq-2020-000944
Children Cancer Foundation - Psychosocial and Supportive Care Programme (PSCP) for Paediatric Oncology. (2022, June 2).
Psychosocial and Supportive Care Programme. https://www.kkh.com.sg/patient-care/areas-of-care/allied-health-services/Pages/psychosocial-supportive-care-programme.aspx#
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