Psychological Distress in Parents of Children With Advanced Cancer

Abstract

Objectives To describe the prevalence and factors of psychological distress (PD) among parents of children with advanced cancer. Design Cohort study embedded within a randomized clinical trial (Pediatric Quality of Life and Evaluation of Symptoms Technology [PediQUEST] study). Setting Multicenter study conducted at three children’s hospitals (Boston Children’s Hospital, Children’s Hospital of Philadelphia, Seattle Children’s Hospital). Participants Parents of children with advanced (progressive, recurrent, or refractory) cancer Outcome Measure Parental PD, as measured by the Kessler-6 (K6) general psychological distress scale. Results 86 of 104 parents completed the Survey about Caring for Children with Cancer (SCCC, 83% participation); 81 parents had complete K6 data. Over 50% of parents reported high PD and 16% met criteria for serious PD (compared to US prevalence of 2–3%). Parent perceptions of prognosis, goals of therapy, child symptoms/suffering, and financial hardship were associated with PD. In multivariate analyses, average parent K6 scores were higher among parents who believed their child was suffering highly and who reported great economic hardship. Conversely, PD was significantly lower among parents whose prognostic understanding was aligned with concrete goals of care. Conclusions Parenting a child with advanced cancer is strongly associated with high to severe levels of PD. Interventions aimed at aligning prognostic understanding with concrete care goals, and easing child suffering and financial hardship may mitigate parental PD.

Promoting Resilience among Parents and Caregivers of Children with Cancer

“…5,[38][39][40][41] Parents with better insight into their child's prognosis were better able to set realistic goals 42,43 or prepare for their child's death; 43,44 such abilities may encourage more positive psychosocial outcomes. 11,[42][43][44][45] Finally, much of the clinical literature related resilience to positive psychosocial outcomes, a lack of adverse outcomes (comparative normalcy), or those patients and families who go on to lead psychologically healthy or productive lives. [46][47][48] Many cited specific psychosocial outcomes as evidence for or against resilience; however, the timing of the outcome and its…”

“…6 Parent mental health can influence family function as well as affect patient and sibling quality of life and physical health [7][8][9] ; hence, efforts to reduce parent distress are critical. 10,11 Comparatively few studies have described factors of resilience during or after cancer; however, promoting positive psychosocial outcomes is just as critical as minimizing negative ones. Indeed, post-traumatic growth (making sense or finding meaning from traumatic experiences) has been shown to moderate the effects of medical stress and improve life satisfaction among cancer survivors.…”

Treatment intensity and symptom burden in hospitalized adolescent and young adult hematopoietic cell transplant recipients at the end of life

“…(8, 9) Likely due, in part, to the intensity of treatment received at the EOL, AYA oncology patients also experience a myriad of physical and psychological symptoms, and many of these symptoms are poorly recognized, understood, and treated. (10–13) Control of symptoms in pediatric and AYA patients at the EOL is important as parental perceptions of suffering are associated with distress (14) and may complicate parental bereavement. (15, 16) Additionally, given the age and developmental stage of AYA patients, intensive treatment and poorly controlled symptoms at the EOL may negatively impact grief of those outside the immediate family unit, including peers and partners.…”

Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

“…71 Second, over half of parents reported having high psychological distress, with one in seven having distress serious enough to impair their ability to care for the patient or other children in the home, or both. 72 Distress of parents was alleviated when their prognostic understanding was aligned with the goals of care (eg, parents who understood that their child might not survive reported a corresponding aim to reduce suffering). By contrast, distress was higher in parents when they believed that their child was suffering or when they perceived an economic hardship caused by the cancer experience.…”