A psychosocial programme at KKH is helping families build resilience, and provide psychosocial support and intervention on their journey through living with childhood cancer.
Following her diagnosis of a brain tumour, Celeste Chang (left) courageously journeyed to recovery with the unwavering support of her family and the team from the CCF Psychosocial and Supportive Care Programme at KKH.
Image reproduced with permission from SingHealth
Cancer in children is an emotionally stressful event resulting in extensive changes in the life of the entire family unit. Parents often verbalise the loss of a healthy child, feeling guilty and blaming themselves for their child’s illness. Hence, it is important for parents to receive support in coming to terms with the diagnosis, and a key part of which includes understanding and accepting that the cancer was not caused by what they had or had not done, and that they have been doing the best they can as parents.
According to the Singapore Childhood Cancer Registry, 286 children were diagnosed with childhood cancers at KK Women’s and Children’s Hospital (KKH) and National University Hospital, between March 2017 and February 2019. Among Singaporeans and permanent residents seen at KKH, approximately 41 per cent were diagnosed with solid tumours such as neuroblastoma; about 33 per cent presented with blood cancers such as leukaemia; around 24 per cent were diagnosed with brain tumours such as astrocytoma; and about two per cent presented with Langerhans cell histiocytosis, which is a rare and non-specific type of cancer.
The psychosocial impact of cancer treatment
With medical advancement, survivor rates for childhood cancers have greatly improved. Nevertheless, there are inevitable effects of treatment, including impaired cardiovascular, endocrine and neurological functioning. In some cancers such as brain tumours, lasting neurocognitive deficits in areas such as attention, speed of information processing and memory can impede learning in children, impacting on their academic and ability to secure future employment.
Additionally, psychosocial impacts – such as emotional distress, treatment anxiety, academic problems, disrupted family relationships and reduced quality of life – can often be overlooked. In Singapore, whilst medical treatment for cancer is well-developed, there is limited information on the psychosocial needs of children with cancer and their families. Psychosocial support services in Singapore are also in their early phases.
Empowering parents and families with supportive care
In addition to helping children cope with cancer, providing parents and caregivers with support is also essential. When a child is diagnosed with cancer, parents often focus exclusively on the child to ensure the best possible care. While supporting their child, parents may easily overlook their own basic needs such as adequate rest and nutrition, and social and emotional comfort. These factors can increase the risk of caregiver burnout, mood difficulties and even marital tension.
Research suggests a direct positive relationship between children’s and their parents’ coping. When parents are able to cope, so can their children. One important component of parental coping is being able to talk to others about their experiences. The journey for a parent with a sick child can be lonely, and some parents report feeling isolated and finding it difficult to share with others about their child’s health. They may feel that others are not able to fully understand their situation and may worry about how others will perceive their child.
Parents may therefore prefer talking to close friends, religious leaders, peers or healthcare professionals. Most parents report finding comfort in speaking to and receiving practical information from other parents with similar experiences. Regardless of prognosis, families require some form of hope to go through the treatment process by making sense of and finding meaning in the cancer journey.
Coping mechanisms are not ‘one size fits all’, as people cope in different ways, at different ages. What one family perceives to be helpful ways of coping may be less so for another family. Therefore, ongoing support from mental health professionals such as clinical psychologists can assist parents and children in learning and/or developing their coping skills, and building resilience.
Some ways that parents can support their child with cancer, as well as the family, include:
Children with cancer may sometimes ask why they have to go through the medical treatments or think that they are punished for a wrongdoing. Siblings of children with cancer may also experience emotional and/or behavioural difficulties and perceive being ‘less loved’ compared to their sibling.
As feelings of uncertainty, fear and anxiety arise during the course of treatment, it is recommended that parents be as open as possible about the diagnosis and treatment process with their children in age-appropriate ways. Such efforts help to build and enhance trust within the family.
Child life therapists can work together with parents to provide age-appropriate information about cancer to the children and their siblings. Children’s books with pictures relating to the hospital and cancer can also be helpful.
Similar to their parents, children with cancer also experience mixed and intense feelings such as guilt, uncertainty, anxiety, sadness and anger. Children can be supported by providing a time and space for them to share their experiences and feelings.
Often, there is no real need to say much; listening and acknowledging their feelings can be in itself comforting. When parents are able to cope with difficult emotions, children will often be able to do the same as they look up to their parents for emotional support.
To ensure that children with cancer receive ongoing love and support from their parents, parental self-care for their own physical, emotional and social health is essential. Parents are encouraged to eat and sleep as well as possible, and maintain close social interactions and support for themselves. When parents take care of themselves, they are also taking care of their child.
Childhood cancer is a debilitating health condition that has a wide-ranging impact on the child and the family. Close support from healthcare professionals is essential in ensuring the best possible physical, nutritional and psychosocial health outcomes.
Pioneering psychosocial care for families of children with cancer
To optimise emotional, cognitive and physical outcomes for children with cancer, KKH has introduced the Children’s Cancer Foundation (CCF) Psychosocial and Supportive Care Programme for Paediatric Oncology (PSCP). A team of clinical/neuro psychologists, dietitians, physiotherapists, occupational therapists, speech therapists and music therapists support children with cancer and their families from diagnosis to treatment, and into survivorship.
A first-of-its-kind programme in Singapore, the CCF PSCP provides early, individually-tailored and ongoing holistic care in three complementary areas of neuropsychosocial, nutritional, and physical functioning. Additionally, the team conducts ongoing clinical research to better understand the psychosocial needs of children and families to enhance existing support services.
The CCF PSCP was officially launched in 2017 under the SingHealth Duke-NUS Paediatrics Academic Clinical Programme and was made possible via the generous support of CCF. As at May 2019, 225 children and their families have benefited from the CCF PSCP.
Dr Beron Tan, Psychologist, Psychology Service, KK Women’s and Children’s Hospital
Having received his clinical psychology and research training from Edith Cowan University in Western Australia, Dr Beron Tan provides psychological assessments and interventions to children, and conducts research on neuropsychosocial functioning in children with cancer. Dr Tan is also a reviewer for the Journal of Autism and Developmental Disorders.
Dr Lois Teo, Head and Senior Principal Psychologist, Psychology Service, KK Women’s and Children’s Hospital
Dr Lois Teo has been with the KKH Psychology Service since 2006, having also done clinical attachments at National University Hospital, Singapore General Hospital and Tan Tock Seng Hospital. Dr Teo has a doctorate in clinical psychology, and specialises in working with children and adults who present with complex emotional, behavioural and mental health conditions.