Objective Meaning‐making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning‐making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning‐making pre‐bereavement among children with advanced cancer and their parents. Methods As part of a larger study examining shared decision‐making near the end of life, 24 children with advanced cancer and/or high‐risk cancer, 26 mothers, and 11 fathers participated in individual, semi‐structured interviews. Analyses focused on questions regarding meaning‐making. Four coders analyzed the data via directed content analysis. Results Three major meaning‐making themes emerged: (1) sense‐making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit‐finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning. Conclusions Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high‐risk illness. Clinicians might consider if meaning‐centered interventions designed for use in adults at the end of life and bereaved parents may be helpful for children with advanced or high‐risk cancer and their parents.
Purpose Pediatric cancer survivors may have lower quality of life (QoL), but most research has assessed outcomes either in treatment or long-term survivorship. We focused on early survivorship (i.e., 3 and 5 years post-diagnosis), examining the impact of CNS-directed treatment on child QoL, as well as sex and age at diagnosis as potential moderators. Methods Families of children with cancer (ages 5-17) were recruited at diagnosis or relapse (N = 336). Survivors completed the PedsQL at 3 (n = 96) and 5 years (n = 108), along with mothers (101 and 105, respectively) and fathers (45 and 53, respectively). The impact of CNS treatment, sex, and age at diagnosis on child QoL was examined over both time since diagnosis and time since last treatment using mixed model analyses. Results Parent-report of the child's total QoL was in the normative range and stable between 3 and 5 years when examining time since diagnosis, while child reported QoL improved over time (p = 0.04). In terms of time since last treatment, mother and child both reported the child's QoL improved over time (p = 0.0002 and p = 0.0006, respectively). Based on parentreport, males with CNS-directed treatment had lower total QoL than females and males who did not receive CNS-directed treatment. Age at diagnosis did not moderate the impact of treatment type on total QoL. Conclusions Quality of life (QoL) in early survivorship may be low among males who received CNS-directed treatment. However, this was only evident on parent-report. Interventions to improve child QoL should focus on male survivors who received CNS-directed treatment, as well as females regardless of treatment type.
Increasing numbers of childhood cancer survivors enter adulthood and encounter decisions surrounding parenthood. However, limited research has systematically examined how childhood cancer may influence parenthood attitudes among survivors. Methods: Adult survivors of childhood cancer, who had or wanted to have children (N = 77; M age = 30.2 years, range: 22-43; 91% White), rated their perceived impact of cancer at enrollment and parenthood attitudes using the ''Attitudes to Parenthood After Cancer Scale'' 2 years later. First, internal consistencies for the parenthood measure were examined, and modified subscales were proposed. Second, hierarchical stepwise regressions analyzed the contribution of background factors and cancer's impact on parenthood attitudes. Results: Reevaluation of parenthood items yielded four subscales with improved internal consistency (a's > .78): improved parenting due to cancer, no children due to cancer, concerns about a (potential) child's health, and parenthood desire irrespective of own health concerns. Already having children (n = 38) was related to more favorable ratings on most subscales. Older age was associated with perceiving improved parenting due to cancer (r = .24) and shorter time since diagnosis was related to considering having no children due to cancer (r = -.23). Hierarchical stepwise regressions reconfirmed parenthood status as related to more favorable parenting attitudes. Cancer preoccupation and perceiving cancer as a most difficult life experience predicted more concerns toward parenthood (R 2 = .044-.216). Conclusions: Parenthood attitudes were more favorable among survivors with children, who were older, and/or further into survivorship. Survivors burdened by their cancer experience reported more concerns about parenthood. Childhood cancer may shape parenthood perceptions positively and negatively, warranting further research to inform interventions.
Objective To identify coping trajectories from diagnosis through survivorship and test whether particular trajectories exhibit better health-related quality of life (HRQOL) at 5 years post-diagnosis. Methods Families of children with cancer (ages 5-17; M = 10.48, SD = 4.03) were recruited following a new diagnosis of cancer (N = 248). Three follow-up assessments occurred at 1-year (N = 185), 3-years (N = 101), and 5-years (N = 110). Mothers reported on children’s coping using the Responses to Stress Questionnaire for Pediatric Cancer. Survivor HRQOL was measured at 5-year follow-up using self-report on the PedsQL 4.0. Longitudinal patterns of coping were derived using Latent Class Growth Analysis and mean-levels of survivor-report HRQOL were compared across classes. Results Two primary control coping trajectories emerged, “Moderate and Stable” (50%) and “Low-moderate and Decreasing” (50%), with no significant differences in HRQOL across trajectories. Three secondary control coping trajectories emerged, “Moderate-high and Increasing” (54%), “Moderate and Stable” (40%), and “High and Increasing” (6%), with survivors in the last trajectory showing better HRQOL. Two disengagement coping trajectories emerged, “Low and Stable” (85%) and “Low and Variable” (15%), with no significant differences in HRQOL across trajectories. Conclusions Coping trajectories were relatively stable from diagnosis to 5 years. A small group of survivors with high and increasing secondary control coping over time, per mother-report, reported better HRQOL. Future research should consider tailoring coping interventions to children with cancer to improve survivors’ HRQOL.
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