Oral Presentation FCIC Survivorship Conference 2013

When the ‘all clear’ is not so clear: Families’ coping with fear of childhood cancer recurrence. (#21)

Jordana K McLoone 1 2 , Claire E Wakefield 1 2 , Nadia T Evans 3 , Richard J Cohn 1 2
  1. School of Women's and Children's Health, University of New South Wales, Kensington, NSW, Australia
  2. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
  3. School of Medicine, University of New South Wales, Kensington, NSW, Australia

Objective: Childhood cancer survivors remain at increased risk of experiencing recurrence, relapse, and second malignancies for decades after treatment completion. However, whether or not such negative outcomes will ever eventuate for any individual remains unknown. This study investigated participants’ concerns regarding the potential for children’s cancer to return after treatment completion and the associated coping strategies used by survivors and their families. Methods: One hundred and twelve semi-structured telephone interviews were administered to survivors of childhood cancer recently off-treatment and their families (19 survivors, 44 mothers, 34 fathers, 15 siblings). Interviews were analyzed using the framework of Miles and Huberman and emergent themes were organized using QSR NVivo8. Results: Almost all participants (110/112) reported experiencing uncertainty regarding the survivor’s future due to the risk of cancer recurrence. Overwhelmingly, these concerns led to feelings of anxiety, though only a small proportion of participants sought professional support and only some reported personal coping strategies adequate to manage their fear. For the majority of participants, less useful coping strategies such as avoidance, distraction and the internalization of emotions were used. Conclusions: Study findings highlight the importance of specifically addressing fear of recurrence in interventions developed for pediatric cancer survivors and their families. Additionally, mental health promotion within the oncology setting is needed to ensure that interventions are utilized by families who may not believe help seeking is appropriate years after a child has been ‘cured’.