Aims
Following their child’s cancer diagnosis, parents have to rapidly familiarize themselves with cancer-specific information and the health-care setting. Previous studies have stated a need for theory to help address parents’ difficulties when navigating the health care system. We examined parents’ experiences with health care professionals (HCP) to better understand the communication during and after their child’s cancer treatment.
Methods
We recruited parents of children (aged <18 years) who recently completed cancer treatment with curative intent from nine Australian hospitals. We conducted in-depth interviews using the Psychosocial Adjustment to Illness Scale as part of the baseline assessment of the ‘Cascade’ survivorship intervention. We used grounded theory to explore parents’ health care experiences.
Results
Parents of 49 survivors participated, including 46 mothers and six fathers (mean age 41 years [range 21-56]). The average age of the child at diagnosis was 5.6 years (0-15); time since treatment, 2.6 years (0.3-10.7). Parents’ experiences with HCP were characterized by four themes: 1) positive and negative interactions, 2) attitudes towards doctors and treatment, 3) trust and mistrust in the doctor-parent relationship and 4) active engagement in past and future care. Parents valued the skills and support (informational, practical, emotional) of HCP. When parents experienced adverse interactions, they rationalized those by the limiting circumstances of the medical environment. A majority of parents felt detached from the health care system and professionals after treatment ended. We propose a framework describing potential mechanisms in parents’ communication-experience.
Conclusion
Identifying characteristics impacting parents’ experiences disclosed new points for targeted intervention: HCP who were approachable and personable seemed to gain parents’ trust more easily. Transparency through continuous communication was important to mitigate treatment uncertainty. Explicit and well-explained guidance, e.g. in form of tailored survivorship care plans might benefit parents’ engagement in long-term follow-up care, including care outside of oncology.