The loss of a child is the most painful, intense, and devastating type of bereavement. Parents who experience the death of a child to cancer face unique challenges in making meaning of their loss. They are vulnerable to numerous detrimental outcomes, including prolonged grief disorder (PGD). Despite these facts, parents underutilize bereavement psychosocial services. The need to develop empirically-supported conceptually sound interventions for bereaved parents is clear. We have found that a manualized meaning- centered psychotherapy (MCP) is efficacious in enhancing meaning and sense of purpose among advanced cancer patients. Although prior studies have described the crisis in meaning that bereaved parents face, research on the specific ways in which meaning-making is challenged in parents bereaved by cancer is limited. Furthermore, there has been debate about whether to target high-risk populations (e.g., PGD), for grief intervention outcome studies. The long-term goal of this research program is to develop and evaluate a theory- driven meaning-centered grief intervention for bereaved parents in order to enhance meaning and ultimately reduce their suffering. In order to modify MCP into a feasible, acceptable, and effective intervention for parents bereaved by cancer, it is critical to acquire a comprehensive understanding of their unique bereavement experience, intervention preferences, and barriers to psychosocial service use. The overall objective of this mixed-methods pilot study is to aid in the development of a meaning-centered grief intervention by achieving the following specific aims: (1) identify the unique themes related to finding meaning among parents who lose a child to cancer to inform development of conceptually sound intervention content;(2) determine differences in themes of meaning in parents in the high and low PGD subgroups to help select a target population;and (3) identify factors associated with bereaved parents'psychosocial service use, including intervention preferences and perceived barriers, to guide the development of an acceptable intervention format. We will recruit parents bereaved 6 months to 3 years ago from 75 families. Parents will first complete a set of quantitative assessments of 1) meaning and purpose, 2) PGD, 3) insecure attachment (a key risk factor for PGD), 4) overall adjustment, and 5) psychosocial service use, preferences, and perceived barriers to use. Using the measure of PGD, we will identify parents who scored at least one standard deviation above the norm (n = 12, """"""""high PGD subgroup"""""""") and at least one standard deviation below the norm (n = 12, """"""""low PGD subgroup""""""""). We will conduct in-depth semi-structured qualitative interviews about themes of meaning-making. We will use thematic content analysis to compare parents with high vs. low levels of PGD. We expect that the high PGD subgroup will report thematically different and more severe challenges in finding meaning when compared to the low PGD subgroup.
For Aim 3, we hypothesize that parents with higher levels of PGD will be less likely to use psychosocial services following the loss of their child, based on the concept of treatment fearfulness.
Findings from this study will be used to develop a theory-driven, effective, and acceptable meaning- centered grief intervention that has the potential to be readily disseminated within pediatric cancer care facilities. Improving palliative and end-of-life care, which extends through the bereavement phase, is a public health priority. Furthermore, nearly all survivorship research has focused on long-term issues for surviving patients;few resources have been dedicated to parents who survive the death of a child. This project will have high positive impact because it will identify factors among parents who lost a child to cancer that are essential to tailoring a grief intervention for this vulnerable population.
|Lichtenthal, Wendy G; Breitbart, William (2015) The central role of meaning in adjustment to the loss of a child to cancer: implications for the development of meaning-centered grief therapy. Curr Opin Support Palliat Care 9:46-51|
|Lichtenthal, Wendy G; Corner, Geoffrey W; Sweeney, Corinne R et al. (2015) Mental Health Services for Parents Who Lost a Child to Cancer: If We Build Them, Will They Come? J Clin Oncol 33:2246-53|
|Wiener, Lori; Sweeney, Corinne; Baird, Kristin et al. (2014) What do parents want to know when considering autopsy for their child with cancer? J Pediatr Hematol Oncol 36:464-70|
|Lichtenthal, Wendy G; Nilsson, Matthew; Kissane, David W et al. (2011) Underutilization of mental health services among bereaved caregivers with prolonged grief disorder. Psychiatr Serv 62:1225-9|