Grief and Bereavement Support
Grief and Bereavement Research
Researchers at St. Jude and across the country have partnered with parents to learn more about their grief and bereavement and are working on ways to better support families. Here are several of the papers we have published over the past several years.
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Parental Perspectives of Communication at the End of Life at a Pediatric Oncology Institution
This was the first of three papers that came from our series of focus groups with bereaved parents at St. Jude. Parents shared the importance of inclusion the child and siblings, strong relationships and trust between the family and team, and clarity and empathy in serious illness communication.
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Parental Grief Following the Death of a Child from Cancer: The Ongoing Odyssey
The second paper in this series attempted to explain the unique and life-long nature of parental grief, including the need of parents to maintain connections with their child, and need to share the meaning and influence of this child’s life with others.
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Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents' grief journeys
The third paper from this series of focus groups talks about the role of healthcare institutions/ hospitals in supporting families after the death of a child from cancer. We used the stories from parents to develop direction for grief support that should be provided by providers and institutions.
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Reconsidering early parental grief following the death of a child from cancer: a new framework for future research and bereavement support
In this paper, we review the data on factors that are associated with grief outcomes in parents of children following the death of a child from cancer. Combining this information with our clinical experience, we present a framework for studying the early grief experience, which we define as the first 2 years following death.
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Engaging Parents of Children Who Died From Cancer in Research on the Early Grief Experience
This is our research paper about doing research. In this paper, we present the results from a survey involving our first group of 50 parents. They shared their experiences of grief and bereavement with us, and what makes this study unique is that we involved parents in every aspect, from planning to execution. We also discuss the strategies we used and the lessons we've learned in conducting research with parents who have recently experienced loss.
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Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning
This is the primary paper from our study on bereaved parents, which included 125 parents from both St. Jude and Dana-Farber/Boston Children's Hospital. Despite high rates of depression (44% of parents), anxiety (37%), post-traumatic stress disorder (42%), and prolonged grief (25%), the average social functioning score of parents in our study was only moderately lower than that of the general population. This suggests that most parents in our study were able to start coping with their grief and continue with their daily responsibilities.
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"It's Hard Not to Have Regrets:" Qualitative Analysis of Decisional Regret in Bereaved Parents
In this study, we examined the written responses given by 123 parents when asked if they had any regrets regarding decisions made at the end of their child's life. We discovered that: o 38% of parents expressed some form of regret. o 12% were unsure about whether they had regrets. o 50% did not have any regrets. Most of the regrets were associated with the treatments and the decision-making process itself. Parents who had regrets tended to feel isolated in their decision-making, while those without regrets indicated that they took a team-based approach to decision-making.