In the fight against childhood cancer, psychosocial wellbeing is an essential component of holistic care. The triumphs of modern medicine should be matched by equally significant improvements in quality of life.
In the fight against childhood cancer, the triumphs of modern medicine should be matched by equally significant improvements in the quality of life. Photo: Thirdman
Cancer in childhood is a life-altering diagnosis, impacting not only children and adolescents, but also their parents, caregivers, and extended family. With scientific advancements leading to higher cure rates for paediatric cancer, there is growing recognition of the importance of addressing the psychosocial suffering experienced by these youth and their families.
Childhood cancer cures come at a high cost, requiring intensive treatments that last months or even years and result in high symptom burden, poor quality of life, and potentially lifelong chronic illness or disability for some survivors. A substantial number of children and adolescents with cancer face psychosocial (mental and social) health challenges. Mental health challenges can range from mild distress to more severe conditions like depression, anxiety, post-traumatic stress disorder (PTSD), or fear of cancer recurrence. For many, mental health concerns begin at diagnosis, but they can also emerge during other critical periods, such as at the end of treatment or disease progression.
Children and adolescents diagnosed with cancer face long periods of social isolation through their treatment.
Children and adolescents diagnosed with cancer also face long periods of social isolation through their treatment. Repeated hospital visits and admissions, side effects, and being immunocompromised can mean that they withdraw from the social activities and environments that are critical for their learning, friendships, and development. Instead, they may face the confines of their hospital or home for the months or years required for treatment. The end of treatment then brings a potentially challenging transition back to school and social activities. Children and adolescents often also need to navigate changed abilities, changed relationships, and possibly also a changed future due to the impact of their cancer treatment.
While some children and adolescents are able to overcome these challenges with support from their healthcare team and loved ones, others require more intensive intervention.
Caregivers, too, are at risk of experiencing significant psychosocial distress and social isolation. The emotional toll of caring for a sick child is often compounded by financial strain, work disruptions, and other practical difficulties. Caregivers’ focus on their sick child means they too are often removed from their social activities and social support system, potentially compounding their distress. The emotional struggles of caregivers can intensify the distress experienced by young patients, and vice versa.
Despite the growing body of evidence highlighting the prevalence of psychosocial health issues among children with cancer and their family members, there remain significant gaps in our understanding, particularly on a global scale. Most research has been conducted in high-income countries, often in English, leaving the needs and experiences of most of the world’s childhood cancer patients and their families unexplored. Particularly vulnerable groups—such as children in low-income countries, migrant families, LGBTQ+ youth, children living in poverty, and those from First Nations communities—are often severely underrepresented in research.
Caregivers are also at risk of experiencing significant psychosocial distress and social isolation. Photo: RDNE Stock Project
In response to this research gap, a collaboration with the World Health Organization (WHO) Global Initiative for Childhood Cancer is underway to conduct the first truly global study of the psychosocial needs of families affected by cancer. This groundbreaking study aims to provide a comprehensive view of the psychosocial challenges faced by families worldwide. The study will survey thousands of families in all official UN languages and beyond.
Addressing the psychosocial health needs of children and adolescents with cancer, as well as their families, requires more than just understanding the prevalence of needs and risk factors. The critical challenge is how to effectively and sustainably provide tailored psychosocial support to all who need it. The landmark Standards for the Psychosocial Care of Children with Cancer and their Families provide a comprehensive overview of how best to start addressing families’ needs.
However, in many low-resource environments, advocacy is needed to prioritise psychosocial care within national cancer control plans. This often begins with reducing stigma around mental health so that families are willing to undergo psychosocial screening. The next challenge is allocating limited resources between essential services, including medical, nursing, and psychosocial care. Workforce limitations, such as a lack of psychosocial training for healthcare professionals, also pose significant barriers, as do political and leadership challenges that often result in a focus on medical cure at the expense of psychosocial care.
In many low-resource environments, advocacy is needed to prioritise psychosocial care within national cancer control plans.
It is also crucial to integrate high-quality supportive care, such as pain management, alongside mental health interventions. Practical support for families facing financial hardship, work disruptions, and impacts on siblings is equally important.
Given the diverse challenges across different contexts, interventions developed for one setting may not work in another. However, there is still immense value in global collaboration and knowledge-sharing across borders and disciplines. Most importantly, we must work in partnership with those directly affected by cancer—whether through their own diagnosis or that of a loved one—if we want to truly improve the quality of life for everyone impacted by cancer.
In the fight against childhood cancer, psychosocial care is an essential component of holistic care. By addressing the psychosocial wellbeing of young patients and their families, we can help to ensure that the triumphs of modern medicine are matched by equally significant improvements in quality of life.
The opinions expressed are those of the authors and do not necessarily reflect the position of Re:solve Global Health.
Professor Claire Wakefield is a medical psychologist and the executive director of the Behavioural Sciences Unit at UNSW Sydney and Sydney Children’s Hospital. Her work aims to improve outcomes for children affected by cancer and their families. She serves on the board of directors for the International Society for Paediatric Oncology (SIOP) and is the continental president for SIOP Oceania.
Dr Clarissa Schilstra is a two-time childhood cancer survivor, diagnosed with acute lymphoblastic leukaemia at ages two and 13. She is a post-doctoral research fellow at UNSW Sydney and Sydney Children’s Hospital. Her work aims to improve the social wellbeing of children, adolescents, and young adults diagnosed with cancer. She is also the staff lead of the Kids Cancer Centre Family Advisory Committee at Sydney Children’s Hospital.
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