When a Parent has Cancer: An Examination of Providers’ Training and Parents’ Preparation for Disclosure Conversations

Abstract

Patients diagnosed with cancer who have school-aged children are faced with many challenges, both physical and emotional. These parents seek out guidance from their providers about how to navigate such challenges (e.g., how to tell their children about the diagnosis). However, their requests are often met with hesitation. Currently, there are few studies that investigate how providers can assist such parents with their communication efforts. This paper is comprised of two studies: The quantitative study focused on providers’ training and perceptions about their roles related to assisting parents with communication regarding cancer with their children. The qualitative study centered on parents’ experiences with having gone through this process – with or without professionals’ involvement.In the quantitative study, the author developed and utilized a survey informed by previous scholarship. Fifty-six (56) providers participated. After running descriptive statistics to learn about the samples’ characteristics, two linear regressions were employed to predict the relationship between the number of years providers have practiced and the training they have undergone about how to engage parents and their children in conversations about cancer; no significant predictions were identified. The author then employed a t-test to compare the means of medical providers’ and mental health providers’ respective perceptions about various roles they presume (or not) vis-à-vis parents. Significant differences were found. A chi-square analysis then illustrated that mental health providers maintain a more open perception towards functioning in sundry roles as compared to medical providers. In the qualitative study, the author focused on parents who were diagnosed with cancer (n=10) and had the experience of deciding when and how much to tell their school-aged children about it. A semi-structured interview guided by the Circumplex Model of Marital and Family Systems was employed to collect data. Using a thematic analysis method, the author (and two additional coders) then examined interview transcripts. Ten principal themes emerged. Said themes focused on (a) preparation processes that parents go through to learn how, when, and how much information to give children; (b) how to continue cancer-related communication over time; and (c) desires for more direct assistance and information from providers or care navigators in health teams. Global implications are provided for both studies based on evidence that parents diagnosed with cancer need guidance from providers about how to navigate disclosure conversations with their children. While providers are interested in receiving more training, they do not always perceive it as their role to assist parents. Curricula in education could be revised to include more (and more sophisticated) content regarding provider/patient/family communication. Pedagogical goals should focus on increasing incoming professionals’ comfort with interacting with patients and their families (versus only patients) before they get into the field. Training on-the-job can then be facilitated through ongoing coaching (e.g., required continuing education, instructional forums and workshops, or guild conferences). With increased education, knowledge, and experience, providers will be able to better attend to patients’ and their family members’ needs. In return, parents will be better equipped with support and resources, which will lead to more thoughtful, purposeful, and sensitive conversations with their children.