Mapping Out Journeys of Changing Hopes for Seriously Ill Children

May 8 2018

Mapping Out Journeys of Changing Hopes for Seriously Ill Children

Editor’s Note: In his career as a social psychologist, Douglas Hill, PhD, focuses on understanding how parents, children, and healthcare providers think about and cope with stressful health situations. For the past six years, Dr. Hill has worked with an interdisciplinary team in the lab of Chris Feudtner, MD, PhD, MPH, on research topics including hopeful thinking among parents of children with serious illness, regoaling, good parent beliefs, coping skill interventions for parents, barriers to initiation of palliative care among pediatric oncologists, the impact of pediatric illness on families, and identifying pediatric patients who are unable to communicate. He also is a behavioral researcher for the Center for Pediatric Clinical Effectiveness at Children’s Hospital of Philadelphia. In this guest blog, Dr. Hill shares insights researchers gained from a mixed-methods prospective cohort study on decision-making for parents of seriously ill children.

Parents have many hopes for their children, whether in sickness or in health. When a child has a serious illness, one way to support parents is to help them clarify all the things they might be hoping for regarding their child. We have learned through our research that parents often simultaneously hold many different hopes, which can range from hopes for a cure or a miracle to hopes for comfort. What we know less about, though, has been whether or how parents’ hopes change over time.

The goal of one of our recent studies therefore was not only to describe the landscape of parental hopes but also to map out some of the more common journeys of changing hopes over time. To do this, we asked 199 parents of seriously ill children for three major goals or hopes they had for their child. We followed up to ask the same question at four, eight, 12, 16, and 20 months. Then we coded their responses into one of nine broad topic areas: miracle or cure, length of life, physical body, medical care, medical knowledge, pain and suffering, quality of life, broader meaning, and future well-being. We recently published our results in the journal Pediatrics.

At the individual level, the majority of parents changed at least one hope over time. Many of these changed hopes were in wholly different topic areas than the initial hopes. For example, a mother who started out hoping that her son not suffer might later say that she instead hoped he would one day live independently, changing from a focus on current pain to future well-being.

The four most common kinds of hopes were about the child’s quality of life, physical health, future well-being, and medical care. While fewer parents mentioned hopes about cures, finding meaning in their situation, or their child’s length of life, parents who were in this group were less prone to changing the topics of their hopes over time.

Notably, we found that the 47 parents whose children died reported hopes similar to parents of children who survived, even as their children’s deaths drew closer. Although parents of seriously ill children may change their hopes over time, these hopes do not change radically as the child comes within a few months-to-weeks of death.

Based upon what we heard from parents, we recommend that clinicians regularly check in to update their understanding of parents’ hopes, rather than assuming that these will stay the same over time. While most parents may be most concerned about their child’s quality of life, physical health, future well-being, and medical care, a smaller number of parents may be consistently concerned about their child’s pain and suffering, finding a cure for their child, helping their child live longer, or finding meaning in their situation.

Regularly communicating about goals can improve clinicians’ abilities to provide family-centered care by building stronger relationships with parents and providing better support for both parent and child.