Providing Psychological Support to Parents of Childhood Cancer Survivors: 'Cascade' Intervention Trial Results and Lessons for the Future.
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ABSTRACT:
SUBMITTER: Wakefield CE
PROVIDER: S-EPMC8615912 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Increasing survival rates in childhood cancer have yielded a growing population of parents of childhood cancer survivors (CCSs). This systematic review compiles the literature on positive and negative long-term psychological late effects for parents of CCSs, reported at least five years after the child's diagnosis and/or two years after the end of the child's treatment. Systematic searches were made in the databases CINAHL, EMBASE, PsycINFO, and PubMed. Fifteen studies, published between 1988 and 2010, from 12 projects were included. Thirteen studies used quantitative methodology, one quantitative and qualitative methodology, and one qualitative methodology. A total of 1045 parents participated in the reviewed studies. Mean scores were within normal ranges for general psychological distress, coping, and family functioning. However, a substantial subgroup reported a clinical level of general psychological distress, and 21-44% reported a severe level of posttraumatic stress symptoms. Worry, disease-related thoughts and feelings, marital strains, as well as posttraumatic growth was reported. Several factors were associated with the long-term late effects, such as parents' maladaptive coping during earlier stages of the childs disease trajectory and children's current poor adjustment. Quality assessments of reviewed studies and clinical implications of findings are discussed and recommendations for future research are presented.
| S-EPMC4110004 | biostudies-literature
Project description:PurposeThe COVID pandemic has greatly impacted cancer care, with survivorship care being accorded low priority. We aimed to assess the impact of the COVID pandemic on survivorship services at our centre, as well as on survivors of childhood cancer (CCS).MethodsWe analyzed the trends in survivorship care at our centre from March 2020 to June 2021 compared to previous years. We also conducted an online survey of adolescent and young adult (AYA-CCS) following up at the After Completion of Treatment Clinic, Mumbai, to assess the impact of the COVID pandemic and ensuing restrictions on our cohort of survivors. Sibling responses were used as comparator (CTRI/2020/11/029029).ResultsThere was a decrease in in-person follow-ups and increase in remote follow-ups over the first few months of the pandemic. While in-person visits steadily increased after October 2020 and reached pre-pandemic numbers, distant follow-ups continue to be higher than pre-pandemic. Evaluable responses from the survey of 88 AYA-CCS and 25 siblings revealed new-onset health concerns in 29.5% of AYA-CCS, missed follow-up visit in 52% and varying degrees of mental health issues in 12.5%. While most survivors were able to cope with the stresses of the pandemic, 20% of siblings reported being unable to cope.ConclusionsSurvivorship services continue to be affected well into the pandemic, with increased use of distant follow-ups. While AYA-CCS experienced significant physical, mental health issues and psychosocial concerns as a result of the COVID pandemic, they coped better than siblings during this stressful time, possibly due to multiple, holistic support systems including family, peer support groups and healthcare team.
| S-EPMC8727237 | biostudies-literature
Project description:BackgroundTaking care of children diagnosed with cancer affects parents' professional life. The impact in the long-term however, is not clear. We aimed to compare the employment situation of parents of long-term childhood cancer survivors with control parents of the general population, and to identify clinical and socio-demographic factors associated with parental employment.MethodsAs part of the Swiss Childhood Cancer Survivor Study, we sent a questionnaire to parents of survivors aged 5-15 years, who survived ?5 years after diagnosis. Information on control parents of the general population came from the Swiss Health Survey (restricted to men and women with ?1 child aged 5-15 years). Employment was categorized as not employed, part-time, and full-time employed. We used generalized ordered logistic regression to determine associations with clinical and socio-demographic factors. Clinical data was available from the Swiss Childhood Cancer Registry.ResultsWe included 394 parent-couples of survivors and 3'341 control parents (1'731 mothers; 1'610 fathers). Mothers of survivors were more often not employed (29% versus 22%; ptrend = 0.007). However, no differences between mothers were found in multivariable analysis. Fathers of survivors were more often employed full-time (93% versus 87%; ptrend = 0.002), which remained significant in multivariable analysis. Among parents of survivors, mothers with tertiary education (OR = 2.40, CI:1.14-5.07) were more likely to be employed. Having a migration background (OR = 3.63, CI: 1.71-7.71) increased the likelihood of being full-time employed in mothers of survivors. Less likely to be employed were mothers of survivors diagnosed with lymphoma (OR = 0.31, CI:0.13-0.73) and >2 children (OR = 0.48, CI:0.30-0.75); and fathers of survivors who had had a relapse (OR = 0.13, CI:0.04-0.36).ConclusionEmployment situation of parents of long-term survivors reflected the more traditional parenting roles. Specific support for parents with low education, additional children, and whose child had a more severe cancer disease could improve their long-term employment situation.
| S-EPMC4798766 | biostudies-literature
Project description:BackgroundThis study investigated longitudinal patterns of psychological distress in adult survivors of childhood cancer.MethodsParticipants included 4569 adult survivors in the Childhood Cancer Survivor Study Cohort (CCSS) who completed the Brief Symptom Inventory-18 on three occasions between 1994 and 2010. Longitudinal latent class analysis was used to identify discrete classes of psychological distress. Predictors of class membership were examined through logistic regression modelling with odds ratios (ORs) and 95% confidence intervals (CIs) reported.ResultsSurvivors were a median of 39 years of age and 30 years from diagnosis at the most recent follow-up. Most survivors reported few or no symptoms of distress over time, although subsets of survivors reported persistently elevated (depression: 8.9%; anxiety: 4.8%; somatisation: 7.2%) or significant increases in distress symptoms over the follow-up period (depression: 10.2%; anxiety: 11.8%; somatisation: 13.0%). Increasing distress symptoms were predicted by survivor perception of worsening physical health over time (depression: OR=3.3; 95% CI=2.4-4.5; anxiety: OR=3.0; 95% CI=2.2-4.0; somatisation: OR=5.3; 95% CI=3.9-7.4). Persistent distress symptoms were also predicted by survivor perception of worsening physical health over time, as well as by worsening pain and ending analgesic use.ConclusionSubgroups of adult survivors are at-risk for chronic distress or significant increases in distress decades following their original cancer diagnosis. Routine screening of psychological distress in adult survivors of childhood cancer is warranted, especially for survivors who experience physical health morbidities.
| S-EPMC3778287 | biostudies-literature
Project description:With mounting interest in translating genome-wide association study (GWAS) hits from large meta-analyses (meta-GWAS) in diverse clinical settings, evaluating their generalizability in target populations is crucial. Here, we consider long-term survivors of childhood cancers from the St. Jude Lifetime Cohort Study, and we show the limited generalizability of 1,376 robust SNP associations reported in the general population across 12 complex anthropometric and cardiometabolic phenotypes (n = 2,231; observed-to-expected replication ratio = 0.70, p = 6.2 × 10-8). An examination of five comparable phenotypes in a second independent cohort of survivors from the Childhood Cancer Survivor Study corroborated the overall limited generalizability of meta-GWAS hits to survivors (n = 4,212; observed-to-expected replication ratio = 0.55, p = 5.6 × 10-15). Finally, in direct comparisons of survivor samples against independent equivalently powered general population samples from the UK Biobank, we consistently observed lower meta-GWAS hit replication rates and poorer polygenic risk score predictive performance in survivor samples for multiple phenotypes. As a possible explanation, we found that meta-GWAS hits were less likely to be replicated in survivors who had been exposed to cancer therapies that are associated with phenotype risk. Examination of complementary DNA methylation data in a subset of survivors revealed that treatment-related methylation patterns at genomic sites linked to meta-GWAS hits may disrupt established genetic signals in survivors.
| S-EPMC7536574 | biostudies-literature
Project description:In this qualitative study, we aimed to provide an in-depth exploration of cancer-related psychological distress experienced by young survivors of cancer during adolescence reporting a need for psychological support.Two individual interviews were held with ten young survivors of cancer diagnosed in adolescence. The interviews were audio-recorded and transcribed verbatim. Analysis followed the guidelines for inductive qualitative manifest content analysis.The survivors described distress experienced during and after the end of treatment. Five categories comprising 14 subcategories were generated. The categories included: A tough treatment, Marked and hindered, Not feeling good enough, Struggling with the fragility of life, and finally, An ongoing battle with emotions.Young survivors of adolescent cancer reporting a need for psychological support described feeling physically, socially, and mentally marked by the cancer experience. They struggled with powerlessness, insecurity, social disconnection, loneliness, and feelings of being unimportant and a failure, and had difficulties understanding and managing their experiences. These concerns should be addressed in psychological treatments for the population irrespective of which approach or model is used to understand survivors' difficulties. A trans-diagnostic approach targeting processes that underpin different manifestations of distress may be effective.
| S-EPMC5903650 | biostudies-literature
Project description:The current study investigated the occurrence of emotional distress in parents of long-term survivors of childhood acute lymphoblastic leukemia (ALL) and identified factors associated with parent emotional distress symptoms.Parents of 127 long-term survivors of childhood ALL treated on a chemotherapy-only protocol at St. Jude Children's Research Hospital participated in the study. Parents completed standard ratings of emotional distress, caregiver strain, and child physical, emotional, and psychosocial functioning. Multivariable hierarchical linear regression analyses were used to examine associations between symptoms of caregiver strain, survivor functioning, and parent emotional distress. Covariates included parent education, survivor age, survivor sex, and time since childhood cancer diagnosis.On average, few parents reported significant symptoms of emotional distress. Clinically significant levels of anxiety and depression were reported by 7.1% and 3.1% of parents, respectively. Only 3.9% of parents endorsed significant symptoms of posttraumatic stress. Perceived caregiver strain was significantly associated with symptoms of parent anxiety, depression, and posttraumatic stress. Parent-report of child emotional functioning was significantly associated with symptoms of parent anxiety.Most parents of long-term survivors of ALL exhibit low levels of emotional distress in the context of rates observed in the general population. Perceived caregiver strain was significantly associated with parent emotional distress. Further research is required to examine specific sources of caregiver strain, as well as other risk and protective factors associated with parent emotional distress symptoms.
| S-EPMC4485981 | biostudies-literature
Project description:PurposeRecent research demonstrated that fear of progression (FoP) is a major burden for adult cancer survivors. However, knowledge on FoP in parents of childhood cancer survivors is scarce. This study aimed to determine the proportion of parents who show dysfunctional levels of FoP, to investigate gender differences, and to examine factors associated with FoP in mothers and fathers.MethodsFive hundred sixteen parents of pediatric cancer survivors (aged 0-17 years at diagnosis of leukemia or central nervous system (CNS) tumor) were consecutively recruited after the end of intensive cancer treatment. We conducted hierarchical multiple regression analyses for mothers and fathers and integrated parent-, patient-, and family-related factors in the models.ResultsSignificantly more mothers (54%) than fathers (41%) suffered from dysfunctional levels of FoP. Maternal FoP was significantly associated with depression, a medical coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and lower family functioning (adjusted R2 = .30, p < .001). Paternal FoP was significantly associated with a lower level of education, depression, a family coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and fewer siblings (adjusted R2 = .48, p < .001).ConclusionsFoP represents a great burden for parents of pediatric cancer survivors. We identified associated factors of parental FoP. Some of these factors can be targeted by health care professionals within psychosocial interventions and others can provide an indication for an increased risk for higher levels of FoP.Implications for cancer survivorsPsychosocial support targeting FoP in parents of childhood cancer survivors is highly indicated.
| S-EPMC9300493 | biostudies-literature
Project description:Background:We describe post-traumatic stress symptoms (PTSS) and post-traumatic stress disorder (PTSD) in parents of long-term childhood cancer survivors (CCS-parents) and compare them to parents of similar-aged children (comparison-parents) of the Swiss general population (SGP). We compare type of reported stressful event, prevalence of PTSS and PTSD, and psychosocial and cancer-related characteristics associated with PTSS. We further describe the respective normative data for the SGP. Methods:We conducted a nationwide cross-sectional questionnaire survey in a population-based sample of long-term CCS-parents (survivors aged ?16 years at diagnosis, ?20 years at study, >5 years post-diagnosis) and in the SGP. Using the Impact of Event Scale-Revised, we measured PTSS regarding the most stressful event experienced, and computed probable cases of PTSD. Results:Participants included 663 CCS-parents (39.4% fathers) and 1035 individuals of the SGP (40.0% male), of which we identified 391 comparison-parents (41.2% fathers). Illness was most often indicated as stressful event (CCS-parents: 49.5%, comparison-parents: 27.6%, SGP: 25.3%). Prevalence of PTSS and PTSD (CCS-parents: 4.8%, comparison-parents: 6.7%, SGP: 5.6%) did not significantly differ. Lower education was associated with higher intrusion, avoidance, and hyperarousal in all samples (all P ? .003). Parents of children with a chronic illness reported higher intrusion (all P ? .004). We found no associations with cancer-related characteristics. Conclusions:No increased risk for PTSS or PTSD was found among CCS-parents. Individuals with lower education and those with a chronically ill child might benefit from additional support to help manage and resolve the stress symptoms in the long term.
| S-EPMC7411524 | biostudies-literature
Project description:BackgroundOver a third of critical illness survivors suffer from mental health problems following hospitalization. Memories of delusional experiences are a major risk factor. In this project, ICU doulas delivered a unique positive suggestion intervention targeting the vulnerable time period during critical illness when these memories are formed.MethodsAdult critically ill patients were recruited for this single-arm, prospective pilot study. These ICU patients received a positive suggestion intervention daily during their ICU stay in parallel with their medical treatment. The intervention was designed to be delivered over a minimum of two sessions. Feasibility was defined as intervention delivery on ≥ 70% of ICU days after patient enrollment. As a secondary analysis, psychometric questionnaires were compared to those of a historic control cohort of patients receiving standard care in the ICU using adjusted linear regression models.ResultsOf the 97 patients who received the intervention and were alive at the end of their ICU course, 54 were excluded from analyses mostly for having received only one session because of a short ICU length of stay of < 2 days, transitioning to comfort care or not wanting to answer the study questionnaires. Forty-three patients who completed 2 or more sessions of the positive therapeutic suggestion intervention provided by two trained ICU doulas received it for a median of 4 days (IQR 3, 5), with each session lasting for a median of 20 min (IQR 14, 25). The intervention was delivered on 71% of days, meeting our pre-determined feasibility goal. Compared to historical controls (N = 299), patients receiving the intervention had higher severity of illness and longer length of stay. When adjusted for baseline differences, patients both with and without mechanical ventilation who received the intervention scored lower on the Hospital Anxiety and Depression Scale (HADS)-Depression subscale. The intervention was also associated with reduced HADS-Anxiety subscale among ventilated patients.ConclusionsPositive therapeutic suggestion delivered by ICU doulas is feasible in the ICU setting. A randomized trial is warranted to better delineate the role that positive suggestion and ICU doulas may play in ongoing interprofessional efforts to humanize critical care medicine. The study was registered on clinicaltrials.gov (NCT03736954) on 03/14/2018 prior to the first patient enrollment https://clinicaltrials.gov/ct2/show/NCT03736954?cond=ICU+Doulas+Providing+Psychological+Support&draw=2&rank=1 .
| S-EPMC8691072 | biostudies-literature