Engaging fathers in palliative care research

Tamara Vineberg and Judith Chrystal - 01 June 2020

Mark Belletrutti was a co-investigator on the importance of fathers contributing to pediatric research.
Fathers of children with life limiting illnesses want an opportunity to express their experiences, a recent study has found. Mark Belletrutti, associate professor of pediatrics in the Division of iHOPE, was involved in the study that focused on engaging fathers in palliative care research. The team examined fathers’ participation in research, their experiences with their sick children and what they need as support systems.

The main challenge for researchers was how to connect with fathers to become involved in the study. The team found that fathers were interested, but researchers have to be more flexible about how and when they engage with dads. Instead of attempting to meet fathers during the day, researchers should consider using telephone interviews, email and have evening focus groups. “As researchers, we also need to be very clear as to why we’re doing this study. We need to be up front with the commitment needed from participants so they can make a decision to participate or not,” says Belletrutti.

The study discovered that fathers are underrepresented when parents are recruited for research. His team analyzed studies on parental involvement in their child's care or coping with illness and found that around 75 per cent of the participants in these studies were mothers. “When a physician is dealing with a child, the mother is usually in the hospital with them. The father is the one less likely to take time off work. The mother is the primary person who you communicate with because they are there more often, so they tend to be approached first for research,” says Belletrutti.

He adds that engaging fathers in research is important because their experiences are different from those of mothers. The study showed that fathers want to help with research, contribute their experiences and are grateful to be approached.

One aspect that has been minimally studied is exploring how fathers cope when their children have severe or life-limiting illness, or after their child dies. Belletrutti has observed fathers struggling with sadness and anxiety over their child’s health. However, they may not express it as vocally as mothers do.

“Moms will share with other mothers; they will strike up conversations in hospital hallways. With dads, it’s difficult to know what exactly they are going through. We really don’t know how they feel. Is it the same as the moms? Do they process it differently? Do they deal with it differently? Do they express it differently?” adds Belletrutti.

The study showed that fathers were more practical than emotional, and used more pragmatic coping strategies. They may appear to be strong because they feel it is important for the family, but Belletrutti emphasizes that they may need support as well.

“Involving fathers in research like we did (focusing on coping and support during a child's illness) is crucial because understanding how differently they cope compared to the mothers allows us to better design appropriate supports for them which they report needing and wanting. They also report that current supports tended to more target mothers' needs and coping strategies,” he adds.

There are not many resources to help fathers since existing support groups tend to be mom-dominated. Further research may clarify what fathers need as support. “We need to engage fathers in health care and research,” he adds. “There is a desire out there for fathers to engage with their peers who are in the same situation. But it’s not always verbalized. We need to be more explicit in targeting fathers in research.”