Our Researcher in Focus for July is Kim Murray. Kim is a social worker in the Department of Pediatric Oncology and Haematology at Children’s Health Ireland at Crumlin. Under the supervision of Dr Stephanie Holt and Dr Cormac Owens, she is undertaking a PhD to identify communication strategies and therapeutic interventions that can help support children and their families and reduce suffering and long-term distress following a cancer diagnosis. Her project is entitled “When Cure is no longer an option in Paediatric Oncology Care: Researching Parental Perspectives on end-of-life communication, psychosocial support and decision-making process when their child is dying”.
Cancer is a leading cause of childhood illness. As Kim explains “In Ireland, an average of 137 children under the age of fifteen, and 74 young adults (aged between fifteen and nineteen) are diagnosed with cancer each year. Globally, more than 215,000 children (aged between 0 and 15) and 85,000 young adults (aged between15 and 19) are diagnosed with cancer each year. Leukaemias are the most frequently diagnosed cancers, followed by brain and central nervous system tumors and lymphomas. Overall, there has been a slow but non-significant increase in childhood cancers during the last decade. Treatment varies substantially by cancer type and chemotherapy is the most frequent mode of treatment overall”.
Unfortunately, while survival rates have increased dramatically in the last few decades, cancer continues to be a significant cause of childhood and adolescent death. “Today in developed countries the vast majority of children recover from childhood cancer, with the five-year survival rate currently at approximately 80%. In the 1950s and 1960s the mortality rate was 60-70%. In low to middle income countries however, more than 80% of children die from the disease. In Ireland, on average of 10 girls and 14 boys die from cancer each year. Sadly, childhood cancer continues to be the leading cause of nonaccidental related death in children throughout the world” said Kim.
Childhood cancer diagnosis puts a huge psychological strain on children and their family, especially in cases where there is no cure available and end-of-life care begins. “Cancer has a devastating impact on children and their families. International studies detail the psychological and emotional anguish of parents and the significant financial burden families experience following a child’s cancer diagnosis” said Kim.
Studies show that effective communication between the paediatric oncology team and family throughout the entire journey (diagnosis, treatment, end of life care) is critical. Kim explains further “The body of research related to end-of-life care suggests that the communication strategies implemented during end-of-life have a profound impact, not only on the child and surviving family. ‘Whole-person care’ is a new paradigm for the 21st Century. Good care constitutes providing both good medical care and effective communication for children and families in paediatric oncology. Effective communication is critical to improving the disease outcome and the emotional wellbeing of these vulnerable patients. Effective communication is the primary way and at times the only way, to alleviate suffering for children and families when a cure is no longer possible in a paediatric oncology setting. Research suggests that effective communication is therapeutic, and the framework that supports children, families, and healthcare team during end-of-life care”.
However, as Kim states “How exactly effective communication is therapeutic is not fully understood. There is little literature available to describe the child and parents psychological and emotional process of adapting following a life-threatening diagnosis, their sources of resilience or distress and the role effective communication plays in that process”.
In her PhD project, Kim seeks “to explore parents experience of conversations and communication with the medical team during end-of-life care and immediately following the death of a child” and “identify the support needs of bereaved parents within a specific social context and to inform end-of-life conversations and support services in a pediatric oncology setting”. Ultimately, “the overall aim is to reduce parental suffering and psychological symptoms such as anxiety and long-term distress following bereavement”.
To do this, Kim is performing a in depth analysis of the current research in this area as well as performing interview with parents to “establish their first-hand experience of the impact of a life-threatening diagnosis, identifying what helped them, and their families adapt to emotional and psychological trauma of the experience”.
The information collected in the interviews will be assessed by Interpretative Phenomenological Analysis (IPA), a qualitative research method that provides a detailed examination of a person’s lived experience. As Kim explains “IPA is an approach with a particular psychological interest in how people make sense of their experiences. IPA is committed to the painstaking analysis of the data whereby the researcher conducts a meticulous examination of each research participants interview providing depth to the research process. A qualitative research approach brings forth the psychological and emotional processes parent experience following a life-threatening diagnosis, parenting a child during end-of-life care and the experience of grief following the death of their child. The overall methodological approach has the potential to broaden and deepen the study of end-of-life care”.
With this study, Kim hopes to be able help improve childhood cancer care. “This [research] will provide rich material, which in turn can be used to inform best practice for health care professionals caring for a child at the end of their life and for the child’s family immediately following the death of a child”.