Past Projects

A Qualitative Study of Young Adults Who Experienced Early Parental Loss

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.

A Survey of Oncology Providers: Attitudes and Practices Around Patient Distress

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.

A Pilot Parenting Needs Assessment of Adults with Cancer

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:

• The majority of parents indicated they were very concerned about several of these issues, particularly how to help their children if they do not survive, and how their children will be affected emotionally by their illness.
• Parents with greater concern about these parenting issues also tended to have more general psychosocial distress.

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.