Health-related quality of life and well-being in parents of infants and toddlers with cancer

Background: The unique psychosocial needs of parents and caregivers of young children with cancer are poorly understood. The aims of this study were to examine: 1) the health-related quality of life (HRQL), stress, and psychological distress in parents of young children (0-4 years) diagnosed with cancer, and 2) the associations between parent psychosocial functioning and child treatment characteristics. Methods: Parents (N= 35) with a child (19 males, 54.3%) aged 0-48 months (M= 31.06 months) who were on active cancer therapy were recruited. Parents completed questionnaires related to demographics, parent HRQL, parenting stress, post-traumatic stress symptoms, and parent psychological distress. Results: Parents reported clinically elevated parenting stress (5.88%), post-traumatic stress symptoms (18.18%), and psychological distress (21.87%). Compared to population norms, parents reported lower HRQL in the vitality (t= 5.37, p< .001), mental health (t= 4.02, p< .001), role limitation/emotional (t= 3.52, p< .001), and general health (t= 2.25, p= .025) domains. Number of days since diagnosis (β= -.35, p= .030), child surgery (β= .360, p= .023), and parent social functioning (β= -.40, p= .009) predicted parent psychological distress F(3,24)= 9.11, p< .001, R2 =.53. Conclusions: A subset of parents of young children on active cancer treatment experience clinically-elevated psychosocial symptoms. Having a child who undergoes surgery and having poor social connections put parents at risk of experiencing higher psychological distress. Supports that focus on preventing the emergence of clinically significant distress should focus on parents of young children with cancer who are most at risk of poor outcomes.