Beyond the Cancer Diagnosis: Interview with Claire Wakefield, Hosted by Adrian Pogacian

In the newest episode of ‘Beyond the Cancer Diagnosis’, Adrian Pogacian approaches the Palliative care, End of life and Bereavement in Childhood Cancer, together with Claire Wakefield, medical psychologist whose work aims to improve outcomes for children and young people with cancer and other serious illnesses.

Claire Wakefield is a medical psychologist whose work aims to improve outcomes for children and young people with cancer and other serious illnesses. Her research encompasses psychosocial, behavioural and ethico-legal domains, from diagnosis, through to survivorship, palliative care and bereavement.

She is a Professor in the School of Clinical Medicine at UNSW Sydney, Executive Director of the Behavioural Sciences Unit at Sydney Children’s Hospital, and serves on the Board of Directors for the International Society for Paediatric Oncology (SIOP).

As Continental President for SIOP Oceania, Prof Wakefield advocates for improvements in child cancer care/policy across the Western Pacific region. She has over 320 academic publications and has been named as a chief investigator on grants worth over $60M.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

Adrian Pogacian: Dear Claire, at the beginning of our interview, I would like to briefly describe for our audience the history of the International Society for Paediatric Oncology (SIOP) and your mission and values as Continental President of SIOP Oceania.

Claire Wakefield: The International Society for Paediatric Oncology (SIOP) was founded over 50 years ago, with the vision that “no child should die of cancer: cure for more, care for all”. Today, SIOP has grown into a truly global community, with over 3,500 members across 110+ countries. SIOP is, at its core, interdisciplinary, bringing together oncologists, haematologists, paediatricians, nurses, psychologists, pharmacists, scientists, advocates, and many more, all dedicated to improving the lives of children with cancer worldwide.

As the Continental President of SIOP Oceania, my mission is to ensure that children with cancer across our diverse region have access to the highest quality care possible, including palliative care. The Oceania region encompasses some of the world’s highest income countries and some of the most resource-limited settings, and faces unique challenges related to our geography.

A large proportion of our small population live in small island nations across the Pacific, leading to particular difficulties in delivering quality childhood cancer care.

SIOP Oceania is committed to improving outcomes for all children, and their families, through collaboration, advocacy, research, and teaching, to ensure that no child, regardless of geography, is left behind.

A key focus of my work as Continental President has been bringing our incredible community together to be able to create real change in our region.

Adrian Pogacian: I have always stated that “local is global and global is local.” Consequently, what psychosocial dimensions of childhood cancer are you approaching both at community and global level?

Claire Wakefield: As a psychologist, one of my goals has been to strengthen psychosocial and palliative care services in our region, particularly in settings where resources are scarce. Although childhood cancer affects patients and families globally, the lived experience of cancer is deeply personal and is always shaped by social, cultural, political, and economic contexts.

At the local level, SIOP Oceania focuses on research to identify families’ needs in their own context, and then using that data to advocate for improved access to medical, practical, and psychosocial support, including spiritual care, financial assistance, and peer support.

At the global level, SIOP Oceania works closely with the SIOP’s other continental branches, and with the World Health Organisation (WHO) to advocate for policies that recognise the importance of psychosocial and palliative care as core components of cancer care.

Through collaborations with WHO and international partners (including the American Childhood Cancer Organisation), we are currently supporting a global study of the lived experience of cancer which aims to better understand the needs of patients and families affected by cancer, and then to embed the study findings into national cancer policies.

The survey can be accessed in English, Arabic, French, Russian, Mandarin, and Brazilian Portuguese (accessible here: Global Survey on the Lived Experience of People Affected by Cancer), as well as in Romanian, Turkish, and Polish.

Adrian Pogacian: Palliative care is, by definition, an interdisciplinary effort, where psychosocial team members are viewed as critical. What is the case of palliative care in childhood cancer and, especially, the role of the parent in this whole process?

Claire Wakefield: In childhood cancer and all serious illnesses, palliative care is not only about end of life care- it is about maximising quality of life throughout the treatment experience and beyond. Palliative care is a multidisciplinary field where medical, nursing, psychosocial, and other support teams work together to ensure that children and their families receive the best possible care.

Parents are central to this process, not only as caregivers, but also as decision-makers and advocates for their child.

Providing parents with the information and emotional support they need is critical so that they can successfully navigate complex medical decisions while also ensuring that their child feels loved and safe.

The most effective palliative care models include parents as essential partners in care, empowering parents to make choices that align best with their family’s needs and values.

Adrian Pogacian: Moreover, are there any psychosocial or palliative care standards for children with cancer and their families?

Claire Wakefield: Over the past decade, there has been significant progress in developing standards and guidelines for psychosocial and palliative care for children with cancer. Organisations such as SIOP, the WHO, and the International Children’s Palliative Care Network (ICPCN) have published key principles, including advocating for access to psychosocial supports for all families and early integration of palliative care.

However, implementation of standards remains challenging, particularly in limited-resource settings. The challenge is not just identifying best practices, but also ensuring that they are accessible to all children and families, no matter where they receive treatment.

This requires commitment to training and education, advocacy, fund-raising, and policy development, so that high-quality psychosocial and palliative care is considered standard care for all.

Adrian Pogacian: When we talk about the end of life, we are referring to a legacy that each of us, as a human being, leaves behind. Could we address the topic of legacy when talking about children?

Claire Wakefield: Even the youngest babies and children have profound impacts on their families, their communities, and the world around them. Legacy in paediatric oncology and palliative care is deeply personal to every family, and may take many forms.

Families often find meaning in honouring their child’s life and legacy through storytelling, advocacy, or charitable activities such as fund-raising to support future families affected by childhood cancer. Families can be supported in their memory making, through art, music, biography writing, photography, letters, recordings, and many other mediums too. Legacy does not need to be ‘concrete’ and measurable.

Each child’s healthcare team has a responsibility to support families to identify and preserve their child’s legacy in ways that are meaningful to them.

There are also programs, or interventions, that can help with this process, including approaches such as Meaning-Centred Grief Therapy and dignity therapy, both of which can help families to navigate their grief.

Adrian Pogacian: After the death of a child, parental bereavement is complex and associated with adverse health outcomes, including poor mental and physical health. In your opinion, what are the coping mechanisms or strategies that could be applied in order to improve the psychosocial and emotional dimensions for the parents?

Claire Wakefield: Experiencing the death of a child is one of the most profound and enduring losses a person can experience. Coping is deeply personal and unique to each individual. Some parents find it helpful to connect with other parents who have had a similar experience, for example through peer support groups (in-person or increasingly, online).

Others find that creative activities such as art, writing, and music help them to express feelings that are hard to articulate verbally. Tailored psychological support services and other interventions, for example, grief and bereavement counselling, meaning-centred grief therapy, dignity therapy, spiritual support, family and sibling camps, and remembrance events, can also be invaluable in helping parents to navigate their grief.

There is some evidence too, that having access to palliative care before a child’s death can help parents in their coping after death. Bereaved parents often share how important it was to have some continuity in the supports they receive over time, often valuing supports provided by the team who cared for their child before their end of life, especially in the period shortly after their child’s death. Importantly, we know that grief does not have a timeline and that parents need ongoing support, as their needs evolve over time.

Adrian Pogacian: As for the last question, it is said that “Home is where most patients and families choose to be near the end of life and, in particular, there is evidence that these families cope better after the patient’s death.” What are your thoughts with regard to this choice?

Claire Wakefield: Where a child spends their final moments is a decision that needs to be made by each family individually. Their decision may be shaped by a wide range of medical, social, cultural, and emotional factors. For many families, home offers comfort and familiarity, away from the clinical environment in hospital.

However, there can also be challenges with home-based end-of-life care, and families require significant support to enable their choice, including access to medical care and advice when needed, access to palliative care teams at home, and psychosocial supports for the whole family. Some families describe hospital as another ‘home’ and their care team as another type of ‘family’, so staying in the hospital might be the best choice for them.

Staying in hospital can be helpful in that parents can focus on their role as parents, allowing the care team to provide the nursing and medical support their child needs. There is another choice too: some countries offer paediatric hospice care services, which can help to bridge the gap between hospital and home. Often a key role for paediatric palliative care teams and psychosocial professionals is to help families to make a decision that best meets their child’s and their own needs.

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