Parental distress and desire for information regarding long‐term implications of pediatric cancer treatment

Abstract

BACKGROUND: Parents of children with cancer have unmet information needs about future limitations resulting from cancer or its treatment. Prior research shows that clinicians focus on acute effects of therapy rather than long-term limitations in early care discussions, partly due to worries of causing distress. The validity of concerns about distress is unknown. We evaluated parental distress associated with information about future limitations, and the extent to which distress is associated with information preferences. METHODS: We surveyed 355 parents of children with cancer within 3 months of diagnosis, and the children’s physicians, at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and Children’s Hospital of Philadelphia. Our primary outcome was parental distress associated with information about long-term limitations. RESULTS: 46% of parents found information about future limitations to be extremely or very upsetting. In multivariate analysis, parents were more likely to consider information about future limitations distressing if they also found prognostic information upsetting (OR 5.36, p<0.001), struggled to accept their child’s illness (OR 2.57, p<0.001), or had depression (OR 1.79, p=0.01). However, 92% of parents considered information about potential future limitations to be extremely/very important. Those who found information about future limitations distressing were more likely to consider it important (96% vs 89%, p=0.03), and to desire a precise understanding of their child’s risks (92% vs 80%, p=0.001). CONCLUSION: Though information about future limitations caused by cancer treatment is upsetting to many parents, most parents desire this information, and those who are distressed are more likely to value this information.

The state of the science for communication training in pediatric oncology: A systematic review

“…Research has shown that parents of children with cancer rate the communication skills of their child's oncologist as a critical component of the illness and treatment experience 9 . Although pediatric patients with cancer and their families desire clear, empathic, and frequent prognostic communication, 10‐13 numerous barriers to high‐quality communication persist 14 and parents of children with cancer continue to perceive deficits in the quality of information that they receive about their child's treatment and prognosis 15 …”

Parenting in the face of serious illness: Childhood cancer survivors remember different rearing behavior than the general population

“…After a diagnosis of childhood cancer, families go through processes of disruption and adaptation. Although medical advances have significantly increased survival rates, meeting the demands of complex treatment protocols, managing side and late effects, and uncertainty about the course of treatment exert considerable strains on patients, siblings, and parents . Parents act as stewards of their children regarding care decisions while they struggle to meet other responsibilities at home and at work …”

“…Although medical advances have significantly increased survival rates, 1 meeting the demands of complex treatment protocols, managing side and late effects, and uncertainty about the course of treatment exert considerable strains on patients, siblings, and parents. [2][3][4] Parents act as stewards of their children regarding care decisions while they struggle to meet other responsibilities at home and at work. [5][6][7] Thus, parent-child relationships can be affected by childhood cancer in different ways: For instance, the wish to avoid negative emotions and phantasies (eg, that their child might not survive 8 ) can limit parents' capacity to attend to children's emotional needs in a well-attuned way.…”

“Don't be afraid to speak up”: Communication advice from parents and clinicians of children with cancer

“…17,18 These communication breakdowns can lead to unmet information needs, [19][20][21][22][23] inaccurate prognostic understanding, [24][25][26] decisional regret, 27 and distrust of clinicians. 28 Several studies have explored parental communication experiences, 2,3,[29][30][31][32][33] and some studies have asked parents for communication advice to clinicians and researchers. 34 Few studies, however, have asked parents or clinicians of children with cancer for their communication advice to other parents.…”