There is increasing recognition of the need to better understand how parental illness affects children, and how to best support children in these circumstances. The PACT Program has initiated several research projects to understand the needs of families in which a parent has a serious illness, as well as the needs of the professionals who care for them. Our hope is that lessons learned from research, in addition to our clinical experience, will contribute to our ability to provide useful guidance to parents facing a serious illness.
This National Institutes of Health/ National Cancer Institute funded study sought to validate a questionnaire that measures the levels of concern that adults with cancer have about their children who are 18 years of age or younger. It was conducted in two phases: a focus group phase to gather open-ended information about what parents are concerned about, and development and testing of a survey questionnaire that measures levels of distress and parenting concerns.
We hope that this Parenting Concerns Questionnaire will be useful to other researchers, and clinicians. Our goal is to raise awareness among professionals about the issues facing parents with cancer, and encourage them to address these concerns during cancer treatment.
Intensive interviews were conducted with a group of 18- to 30-year-olds who had lost a parent as a child. They were asked about their memories of the family’s communication about the parent’s illness and death, whether they had received letters or gifts from the deceased parent, the impact of that type of legacy, and whether there were times or stages in their lives when they particularly missed the deceased parent. The interviews have been closely read and coded, and results are being written up for publication.
In collaboration with William Pirl, MD
Director, Cancer-related Fatigue Clinic
Massachusetts General Hospital Cancer Center
All Massachusetts General Hospital oncology and primary care providers were sent an anonymous survey that included questions about their knowledge about parental status and family concerns among their patients. Results suggested that parents are quite unlikely to volunteer the fact that they have children; therefore it is critical that providers ask patients directly whether they are parents. In addition, providers may be most open to hearing about parenting concerns when they are knowledgeable about resources to help their patients. Thus, having resources and ensuring that providers are aware of them are both crucial ingredients in ensuring optimal patient care.
Parents in the Massachusetts General Hospital Cancer Center were asked to complete an anonymous questionnaire about their degree of concern about cancer-specific parenting issues. For example, parents were asked how concerned they were about how to talk to their children about cancer, how their illness would affect their children emotionally, how to keep the illness from disrupting routines, and how to help children if they didn’t survive. Their responses suggested that:
Overall, this pilot study provided information about the nature and extent of parents’ concerns about the impact of cancer on their children, and also indicated that the questionnaire developed for the study shows promise for future research. This study is currently being extended with funding from the National Institutes of Health/National Cancer Institute.