The Hidden Sufferers: Parental Reactions to Childhood Cancer during Treatment and at Survival

Abstract

This study was twofold: 1) to assess parental reactions to childhood cancer throughout the oncological experience and 2) to explore associations between parents' reactions during treatment and cancer-related distress at survival. A cross-sectional descriptive study collecting data (at survival) from retrospective (perceived social support, optimism, distress, coping in the worst situation) and current variables (general stress, distress regarding cancer, benefit finding) was carried out. Forty-one parents of childhood cancer survivors were assessed. High levels of distress (M = 9.5, SD = 1.32, range 4-10) and self-reported efforts to overcome difficulties occurring during the hospitalization (M = 7.48, SD = 3.01, range 0-10) were found. However, parents received high social support from very different sources. This could explain the satisfactory levels of optimism found (43.9% of the sample, M ≥ 16, range 9 - 24). Most parents reported to use engagement (M = 2.57, SD = 0.41, range 1-4) and help-seeking (M = 2.52, SD = 0.53, range 1-4) coping strategies to overcome difficulties. Some parents recognized to use psychological defenses when coping with the distress of cancer. However, this disengagement style was less preferred (M = 1.62, SD = 0.37, range 1-4). Finally, 22% of parents reported positive consequences and 60% reported positive and negative consequences too. When exploring how treatment experiences can influence cancer-related distress in survivorship, we observed that those who received less social support used more disengagement coping and referred higher efforts to overcome difficulties during treatment, displayed persistent distress at survival. These same parents showed higher scores on general stress. Besides, these results were not influenced by child's sequelae at survival. These findings support the hypothesis that "the end of treatment is not the end". Consequently, special attention should be placed in screening parents experiences throughout different milestones of cancer to design tailored interventions aimed at reducing persistent distress at survival.

Post-traumatic growth in family members of childhood cancer survivors—an updated systematic review

“…[30,34,35] In addition, mothers were also found to report child-specific growth as part of their perceived positives consequences, such as their child's character becoming “funnier” or “braver.” [35] Oftentimes, few fathers were part of a study; those who reported on fathers showed similar patterns of PTG and benefit findings as found among mothers. [15,21,29,30,34]…”

“…The search was limited to studies published in English, which may have excluded relevant studies in other languages. [29] Quantitative Yes Yes Yes Yes Yes Yes **** Findler et al (2014) [17] Quantitative Yes Yes Can't tell Yes Yes Yes *** Ford et al (2018) [18] Quantitative Yes Yes Yes Yes Yes Yes **** Gardner et al (2015) [20] Quantitative Yes Yes Can't tell Yes Yes Yes *** Gardner et al (2017) [19] Quantitative Yes Yes Can't tell Yes Yes Yes *** Hensler et al1 (2013) [34] Mixed methods Yes Yes Yes Yes Yes No a ***(*)…”

‘Torn in two’: Experiences of Mothers Who Are Pregnant when Their Child Is Diagnosed With Cancer

“…Alderfer et al (2005) observe that there is considerable variation in how parents experience childhood cancer depending on the length of treatment, diagnosis, physical impacts and treatment progress. However, studies have demonstrated that a child’s cancer diagnosis has profound psychological and physical effects on parents (Bemis et al, 2015; Castellano-Tejedor et al, 2017; McInally & Willis, 2017; Schepers et al, 2017). Numerous studies have reported that parents of children with cancer exhibit high levels of depression, anxiety and reduced quality of life (QoL) during the child’s treatment (Klassen et al, 2008; Sulkers et al, 2014).…”

“…All energy is focused on the child and their recovery, and parents’ needs are often neglected (Cox, 2016; McEvoy & Creaner, 2022). Treatment protocols for childhood cancer are complex, and parents have to witness their child receiving a range of treatments, which can include chemotherapy, radiotherapy, surgery, stem cell transplants and adjunct medications, which often require long periods of hospitalization (Castellano-Tejedor et al, 2017). Alderfer et al (2005) observe that there is considerable variation in how parents experience childhood cancer depending on the length of treatment, diagnosis, physical impacts and treatment progress.…”

Impact of childhood cancer on the family: evidence from Bangladesh

“…Bangladesh confronts s higher incidence rate of CC (13000 new cases per year) [ 11 ]. The families of children with CC suffer from high levels of anxiety, depression, psychological distress, financial impact, and extensive worry for the children [ 12 ]. The actual scenario of the impact of CC on the family is unknown in the country.…”