Why cancer survivors who are parents are not getting support for their children.

Abstract

e13747 Background: Previous research indicates there are approximately two million cancer survivors in the United States who have children under the age of 18, impacting between three and five million youth. These children are often caregivers and face mental health issues, including fear and depression. Kesem is the largest nonprofit dedicated to supporting children impacted by a parent’s cancer, and we completed research to understand why so few cancer patients seek and receive support for their children. Methods: Kesem’s methods included three weeks of ethnographic research in mostly underrepresented communities in rural Mississippi, the Pacific Northwest, and southern Nevada. We completed 124 interviews in 18 cities. We also surveyed 147 survivors and reviewed over 30 databases. Results: There are two primary reasons why cancer survivors do not seek support for their children. First, many families lack awareness of support options. Second, even if support was presented, there are many barriers keeping a family from participating. There is a lack of awareness about parental cancer. The majority of the research participants had not heard of Kesem or any other program offering support for their children. Focus group data indicated that most survivors were given only information for themselves and for an adult caregiver. Most had never been asked whether they had children. Even if support were presented, survey data (n=147) showed that many families would not participate. Notably, survivors had low trust in the healthcare system. Only 63% of the patients surveyed (n=147) would have approached their oncologist’s or physician’s office for advice on how to support their children, had they known to ask. Per above, 49% assumed they could not trust the service provider offering support for their children, without even seeing information on the provider or the program. Conclusions: There are at least three million children in the United States alone navigating a parent’s cancer journey without the mental health support they need. During a cancer diagnosis, continued focus on the social determinants of health, including a review of the core family structure, is critical. We must be asking if youth are in need of support. In order to have higher participation in programming, we must build trust in underrepresented communities, which can be partially addressed by providing services at no cost to families and by being flexible to address scheduling concerns. [Table: see text]