Pediatric palliative care providers can sometimes struggle to engage parents and families.
Parental engagement can be a difficult hill for pediatric palliative providers to climb. Families often contend with an array of competing practical, financial and medical obstacles related to managing a serious or life-limiting illness.
Parents and guardians frequently experience feelings of stress, anxiety and becoming overwhelmed, issues that pediatric palliative care providers can do better in alleviating, according to Eddie Belluomini, COO of 1Care Hospice & 1Care Kids based in Nevada. The pediatric hospice and palliative care provider cares for communities in Las Vegas and in Reno, Nevada, as well as in Phoenix, Arizona.
Many families lack familiarity with the scope of interdisciplinary palliative care and aren’t aware that these services can help address a variety of the physical, social and emotional aspects of serious illness, Belluomini stated. Expanding that education and awareness is a pivotal starting point, he added.
“Parents need so much emotional support because they’re just so overwhelmed when they have a child with a life-limiting illness,” Belluomini told Hospice News. “They need tons of education on what that diagnosis means and what care is available to them. You want to empower and educate these parents and reassure them that we’re there to support them. We can help them with 24/7 services when they need to work or they’re worried about an emergency at 2 o’clock in the morning. That’s a huge thing to reinforce and communicate to parents. Helping them understand is a very important role for us.”
A recent BMJ Journals study of pediatric palliative care experiences in Hong Kong found that a little more than a quarter (27.4%) of parents had an understanding of their child’s disease. Researchers analyzed patient data and interviewed both parents and health care providers in pediatric departments across five regional hospitals in Hong Kong.
More than half (55.8%) of the parental participants indicated that living with the disease was a main stressor. While pediatric palliative care nurses were viewed as helpful in addressing the needs of children with serious illnesses, “service gaps” were found in terms of a need for better medical care collaboration and coordination of supportive resources and information, researchers indicated.
Though participants reported that family and social support structures were present, caregiver stress was reported to “create tension between couples,” the researchers stated. Parents cited that providers did not sufficiently offer the full scope of information and resources needed to support their child’s condition and address their families’ social determinants of health, among other needs. Participants reported seeking out information online and through parent support groups.
Opening up communication channels with parents and other health care providers is significant when it comes to improving quality outcomes and utilization of pediatric palliative care, according to Belluomini.
Providers and parents alike can hold the same misconceptions about palliative care options for children, such as the ability to seek out curative care alongside these services, he stated.
“What’s a huge hurdle for providers, and an even bigger hurdle with parents, is understanding the differences in care options for children and how they can vary from adults,” Belluomini said. “That’s the first thing you have to address so the walls come down a little.”
Communication and care collaborations are a key part of breaking down these misunderstandings and improving engagement, Belluomini added.
“It’s explaining that their child can have this truly concurrent care and not give up any treatments they’re seeking,” he told Hospice News. “It’s having very open communication with parents and other providers that allows us to engage in our respective communities. Sometimes that’s going into a parent support group, sometimes that’s talking with another provider and learning from each other. It’s having lots of different touch points with providers and parents to help the lines of communication always be there and always be open.”
