Emotional Well-Being of Pediatric Brain Tumor Survivors and Comparison Peers: Perspectives From Children and Their Parents.

OBJECTIVE: The aim of this study was to examine the emotional well-being of pediatric brain tumor survivors (PBTS) from the perspective of children's self-reports and parents' reports relative to matched comparison peers (COMP) and their parents. It was hypothesized that PBTS would self-report more depression symptoms, loneliness, and lower self-concept than COMP. We also hypothesized that mothers and fathers of PBTS would report more internalizing symptoms and lower total competence for their children. Age and sex effects were examined in exploratory analyses. METHODS: Families of 187 PBTS and 186 COMP participated across 5 sites. Eligible children in the PBTS group were 8-15 years of age and 1-5 years post-treatment for a primary intracranial tumor without progressive disease. COMP were classmates matched for sex, race, and age. RESULTS: PBTS self-reported lower scholastic, athletic, and social competence, but not more depression, loneliness, or lower global self-worth than COMP. Parents of PBTS reported more internalizing symptoms and lower total competence than parents of COMP. With few exceptions, group differences did not vary as a function of child age and sex. CONCLUSION: PBTS reported diminished self-concept in scholastic, athletic, and social domains, while their parents reported broader challenges with internalizing symptoms and total competence. Discrepancies between self-report and parent report require further study to inform targeted interventions for PBTS. Screening survivors for emotional challenges in follow-up clinic or in school setting may help with the allocation of psychosocial support and services for PBTS and their families.

Recruitment and retention challenges and strategies in randomized controlled trials of psychosocial interventions for children with cancer and their parents: a collective case study.

In pediatric oncology there are few examples of successful recruitment and retention strategies in psychosocial care research. This study aims to summarize experiences, challenges, and strategies for conducting randomized controlled trials (RCTs) of psychosocial intervention studies among children with cancer and their parent(s). We conducted a collective case study. To identify the cases, Pubmed and two trial registries were searched for ongoing and finished RCTs of psychosocial intervention studies for children with cancer and their parents. Online semi-structured expert interviews discussing recruitment and retention challenges and strategies were performed with principal investigators and research staff members of the identified cases. Nine studies were identified. Investigators and staff from seven studies participated, highlighting challenges and strategies within three major themes: eligibility, enrollment and retention. Regarding eligibility, collaborating constructively with healthcare professionals and involving them before the start of the study were essential. Being flexible, training the research staff, enabling alignment with the participants' situation, and providing consistency in contact between the research staff member and the families were important strategies for optimizing enrollment and retention. All studies followed a stepped process in recruitment.  Conclusion: Although recruitment and retention in some selected studies were successful, there is a paucity of evidence on experienced recruitment and retention challenges in pediatric psychosocial research and best practices on optimizing them. The strategies outlined in this study can help researchers optimize their protocol and trial-implementation, and contribute to better psychosocial care for children with cancer and their parents.  Trial Registration: This study is not a clinical trial. What is Known: • Performing RCTs is challenging, particularly in pediatric psychosocial research when both the child and parent are targeted. Recruitment and retention are common concerns. In pediatric oncology, there are few examples of successful recruitment and retention strategies in psychosocial care research. What is New: • Key strategies to collaborate constructively with healthcare professionals were outlined. Being flexible, training the research staff, alignment with the participant's situations and providing consistency in contact between the research staff member and the families were considered as essential strategies.

Factors associated with mental health service use among families bereaved by pediatric cancer.

OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families. METHODS: Bereaved families (n = 85) were recruited from three children's hospitals 3-12 months after their child died of cancer. One eligible sibling (ages 8-17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist). RESULTS: Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007). SIGNIFICANCE OF RESULTS: Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.

Pilot randomized psychosocial trial of a screening intervention in pediatric oncology.

OBJECTIVE: Psychosocial screening is a standard of care in pediatric oncology, but there is limited information about how to intervene after screening. This pilot trial aimed to determine feasibility of the novel Enhanced Psychosocial Screening Intervention (EPSI) and explore its preliminary efficacy outcomes. We examined rates of recruitment, retention, intervention acceptability, and monthly distress screening completion, as well as exploratory efficacy outcomes (Patient-Reported Outcomes Measurement Information System: depression, anxiety and fatigue; distress thermometer, pain and sleep). METHODS: Parallel-group randomized pilot trial: Caregiver-youth (10-17 years at enrollment, newly diagnosed with cancer) dyads were randomly allocated to either EPSI or standard care with 1:1 ratio allocation. EPSI consists of having a Psychosocial Navigator who shares screening results conducted near diagnosis and monthly for one year with treating teams and families, and provides recommendations tailored to screening results. RESULTS: Enrollment rate was 54% (38 dyads); retention was 90% and acceptability 86% (caregivers) and 76% (youth). Exploratory symptoms of depression, anxiety, distress and fatigue outcomes consistently improved mainly for caregivers. CONCLUSIONS: Results suggest EPSI is feasible and acceptable and exploratory mental and physical efficacy outcomes are promising for use in a future confirmatory multisite efficacy trial.

Sharing psychosocial risk screening information with pediatric oncology healthcare providers: Service utilization and related factors.

BACKGROUND: Psychosocial morbidity in pediatric oncology patients and their caregivers is widely recognized. Although routine systematic psychosocial screening has been proposed as a standard of care, screening is still limited. The present study assessed whether supplying the patient's treating team of healthcare providers with psychosocial risk screening information near diagnosis would increase the rate of documented psychosocial contacts, particularly for patients/families with elevated risk. The effect of demographic and clinical factors was also examined. PROCEDURES: Ninety-three families with a child/youth newly diagnosed with cancer participated. Families were randomly assigned to a care as usual control group (n = 44) or an intervention group (n = 49) where the treating team was provided with a summary of family psychosocial risk, measured by the Psychosocial Assessment Tool (PAT). The PAT was completed by the primary caregiver, who also provided demographic information. The number of psychosocial intervention contacts documented in the medical charts was examined. RESULTS: The rate of psychosocial intervention did not significantly differ between the groups (P > 0.05). The intensity of the child's cancer treatment was found to be the only significant predictor of the number of documented psychosocial intervention contacts (ß = 0.396, P < 0.001). CONCLUSIONS: Clinical factors appear to be more predictive of the rate of psychosocial intervention provided to pediatric oncology patients and their families than informing the treating team of family psychosocial risk. Additional research is required to address the gap between psychosocial risk screening, psychosocial intervention, and family outcomes.

A qualitative examination of the benefits and challenges of a psychosocial screening intervention in pediatric oncology: "Support comes to us".

BACKGROUND: Pediatric cancer diagnosis and treatment can have detrimental mental health effects on parents (caregivers) and their children/adolescents (youth). Psychosocial screening and intervention have been recognized as standards of care in pediatric oncology. The most effective psychosocial interventions to support those in need post screening have not been determined. AIMS: This qualitative study aimed to investigate the perceived benefits and challenges for caregiver and youth participants in the screening-intervention arm of an Enhanced Psychosocial Screening Intervention (EPSI) pilot study. METHODS: EPSI consists of a psychosocial navigator (PSN) who shares screening results conducted near diagnosis (T1) and monthly for 1 year (T2) with treating teams and families. All 17 caregiver-youth dyads who had completed EPSI were invited to participate in a semi-structured interview. RESULTS: Ten caregivers and nine youth participated. Identified themes were grouped into benefits and challenges of EPSI: feeling supported and cared for (support comes to us regularly, having someone to talk to); and feeling empowered through knowledge of resources and services were perceived as benefits. Caregivers were challenged by feeling overwhelmed, and youth by screening questions perceived as too repetitive. CONCLUSIONS: Regular monthly contacts for a year by the PSN with screening results and recommendations were perceived as beneficial by youth newly diagnosed with cancer and their caregivers who participated in EPSI. Feeling that support came to them and they had someone to talk to was a critical component. While information about psychosocial resources was not always used right away, it did evoke feelings of being empowered.

Psychosocial functioning of caregivers of pediatric brain tumor survivors.

BACKGROUND: Assessment of caregiver needs is a recommended standard of care in pediatric oncology. Caregivers of pediatric brain tumor survivors (PBTS) are a subgroup that may be at highest psychosocial risk. This study examined psychosocial functioning of caregivers of PBTS in comparison to caregivers of youth without cancer history. We hypothesized that caregivers of PBTS would exhibit more psychological symptoms, higher caregiver burden, and lower perceptions of social support than caregivers of comparison youth. PROCEDURE: As part of a five-site study, we utilized a matched sample design to evaluate psychosocial functioning of 301 caregivers of 189 PBTS (ages 8-15) who were 1-5 years post treatment, and 286 caregivers of 187 comparison youth matched for sex, race, and age. Caregivers completed measures of psychological symptoms, caregiver burden, and perceptions of social support. Repeated measures mixed models compared outcomes between groups and examined differences based on caregiver sex. Socioeconomic status (SES) was examined as a moderator of significant main effects. RESULTS: Caregivers of PBTS reported similar levels of psychological symptoms to caregivers of comparison youth. Mothers of PBTS mothers reported higher caregiver burden and lower perceptions of social support than mothers of comparison youth. Low SES exacerbated group differences in caregiver burden. CONCLUSIONS: Mothers of PBTS may have more caregiving responsibilities and perceive less social support, but reported similar levels of psychological symptoms to comparison mothers; fathers of PBTS were similar to comparison fathers. The mechanisms involved in this complex psychosocial dynamic require further investigation.

Early trajectory of psychosocial risk in families of children and adolescents newly diagnosed with cancer.

We explored early trajectories of psychosocial risk levels (i.e., Universal, Targeted, or Clinical) in families of children and adolescents newly diagnosed with cancer using the Psychosocial Assessment Tool (PAT) in secondary analysis of data from a randomized trial assessing the effects of psychosocial screening. Families were allocated to an intervention group (IG, PAT summary provided to patient treating team) or a control group (CG, no PAT summary provided to treating team) in two pediatric cancer centers. Primary caregivers (N = 122) of newly diagnosed children and adolescents completed the PAT along with outcome measures for the trial at 2-4 weeks post-diagnosis (T1) and 6 months post-diagnosis (T2). The CG and IG were not significantly different, in terms of PAT risk levels at T1 and T2, but at T1, the PAT total and parent stress scores were higher in the CG (p's < .05). The distribution of families across PAT risk levels did not differ significantly between T1 and T2 (p > .05) with 63% of families remaining within the same PAT risk level at T2. A subgroup of families in the Targeted risk level at T1 moved to the Universal (34%) or Clinical (13%) levels of risk at T2 (p's < .01). Another subgroup with Universal risk at T1 trended to Targeted (28%) or Clinical (2%) at T2. While psychosocial risk remained relatively consistent for the majority of families, a smaller number of families experienced changes in risk level over time. Further investigation of these exploratory trends in psychosocial trajectories is needed to guide psychosocial support during child's cancer treatment.Clinical Trial Registration Number: NCT02788604 (registered with ClinicalTrials.gov).

Pediatric Brain Tumor Survivors' Understanding of Friendships: A Qualitative Analysis of ADOS-2 Interview Responses.

BACKGROUND: Pediatric brain tumor survivors (PBTS) are at risk of experiencing social competence challenges, but only a limited number of studies have used a qualitative approach to understand their social relationships. We examined PBTS responses to social interview questions within the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2), which includes questions related to their understanding of their own relationships, as well as the construct of friendship more generally. METHODS: Twenty-four PBTS (ages 9-17 years; M = 14.2 years from diagnosis; 50% male; 42% received radiation treatment) completed the ADOS-2. ADOS-2 social interview responses were recorded and transcribed verbatim. Themes were derived using an inductive thematic analysis approach. RESULTS: PBTS reported that they considered trust, acceptance, respect, emotional support, and spending time together to be important aspects of friendships in general. When describing their own social relationships, some PBTS noted a lack of intimacy or closeness, spending time with their friends almost exclusively at school, with structured activities outside of school being an additional basis for friendship. Challenges to their social relationships included loneliness and reliance on family for social support, experiences of teasing and bullying, social skills deficits, and lack of insight into social situations. CONCLUSION: Although PBTS were able to acknowledge many important qualities of friendships in general (e.g., trust, emotional support), these were not necessarily reported in their own friendships. PBTS also appeared to have difficulty identifying whether someone was their friend. These findings offer potential opportunities for supporting PBTS in achieving friendships consistent with their conception of this important relationship.

The impact of caregiver anxiety/depression symptoms and family functioning on child quality of life during pediatric cancer treatment: From diagnosis to 6 months.

A pediatric cancer diagnosis can have a significant impact on the quality of life (QOL) of the child. Diagnosis and treatment impact caregiver anxiety/depression symptoms and family functioning, and these in turn may influence child QOL. However, there has been limited longitudinal examination of the impact of both caregiver anxiety/depression symptoms and family functioning on youth QOL at specific points during the early diagnosis and treatment period.Ninety-six caregivers of youth (diagnosed with leukemia/lymphoma or a solid tumor) reported on their own anxiety/depression symptoms, family functioning, demographic and medical factors, and on their child's generic and cancer-specific QOL shortly after diagnosis (T1) and 6 months later (T2).Caregiver anxiety/depression symptoms were associated with poorer cancer-specific and generic child QOL within and across time points. Family conflict was associated with youth cancer-related QOL at T1.Attendance to caregiver anxiety/depression symptoms and family functioning, beginning early in the cancer trajectory, is an important aspect of family-centered care. Routine psychosocial screening and triage may help identify and intervene to support both caregiver and child psychosocial well-being.

Impact of End-of-Life Circumstances on the Adjustment of Bereaved Siblings of Children Who Died from Cancer.

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their child's death from cancer. One sibling per family aged 8-17 years (M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings' grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling's death (t(75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean (t(83) = 4.44, p ≤ .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth (t(79) = - 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief (t(80) = - 2.08, p = .04 and t(80) = - 2.24, p = .028, respectively) and grief-related growth (t(80) = - 2.01, p = .048 and t(80) = - 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes.

Tumor surveillance for children and adolescents with cancer predisposition syndromes: The psychosocial impact reported by adolescents and caregivers.

PURPOSE: Individuals with cancer predisposition syndromes (CPS) are often followed in cancer screening programs, which aim to detect early stage tumors. While cancer surveillance has the potential to improve patient outcomes, its psychosocial impact is uncharacterized in the pediatric population. We examined the cancer surveillance experience from the perspectives of adolescents and parents of children at risk of developing cancer. PATIENTS AND METHODS: Using grounded theory and thematic analysis qualitative methodology, we conducted semi-structured interviews with parents and adolescents, separately. Interviews were transcribed verbatim and coded separately to derive overlapping and unique themes. RESULTS: We completed 20 semi-structured interviews (11 parents and nine adolescents). Positive experiences were related to feelings of reassurance and taking a proactive approach. Both adolescents and parents experienced worry, related to practical aspects of screening, and related to the reminder of cancer risk that manifests with surveillance appointments. This worry was cyclical, associated with appointments, and generally waned over time. Participants felt that the benefits of surveillance outweighed perceived challenges. Open communication with health care providers, and equipping parents/adolescents with vocabulary to discuss their diagnosis and care with others, were felt to be important for mitigating worries associated with cancer risk and surveillance. CONCLUSION: Parents and adolescents experience worry associated with surveillance for CPS, which may warrant regular psychosocial support, particularly during the first year following CPS diagnosis. Enhancing communication with the health care team and among and beyond immediate family members represents an additional important strategy to mitigate adverse experiences and perceptions.

A Novel Approach to Understanding Social Behaviors in Pediatric Brain Tumor Survivors: A Pilot Study.

BACKGROUND/OBJECTIVES: Pediatric brain tumor survivors (PBTS) are at risk of experiencing challenges in social adjustment. However, the specific social behaviors of PBTS have rarely been directly assessed. This pilot study explores the first novel use of the Autism Diagnostic Observation Schedule, second edition (ADOS-2), to evaluate the social behaviors of PBTS. METHODS: Twenty-six PBTS (ages 9-17 years; M = 7.8 years from diagnosis; 52% male; 41% received radiation treatment) completed the ADOS-2. The proportion of the sample experiencing impairment was examined descriptively across all items of the ADOS-2, as well as by a summary "overall score" created for this study, and using the ADOS-2 "diagnostic algorithm" scores for autism. Social adjustment, cognitive, medical, and demographic variables were explored as correlates of the ADOS-2 "overall score". RESULTS: Study recruitment was 34%, impeded by distance from the tertiary-care center. The percentage of PBTS experiencing detectable impairments ranged from 0% to 50% across ADOS-2 items. Cranial radiation treatment, lower IQ, and slower cognitive processing were associated with higher impairment on the ADOS-2 "overall score". CONCLUSION: The ADOS-2 can be used to assess the discrete social behaviors of PBTS. This study provides a foundation for future investigations using the ADOS-2 to assess social behaviors in this population. Identifying specific social behavior difficulties in PBTS is key to refining much needed targeted social skills interventions for this population.

Development and testing of the Hogan Inventory of Bereavement short form for children and adolescents.

To reduce response burden for bereaved children and adolescents, we provide data on the development and psychometric testing of a short form of the Hogan Sibling Inventory of Bereavement (HSIB). The resulting measure of grief symptoms and personal growth was renamed the Hogan Inventory of Bereavement - Short Form (Children and Adolescents; HIB-SF-CA). Psychometric properties were evaluated in a sample of 86 bereaved siblings. Instrument development and validation research design methods were used. Evidence of strong reliability and convergent validity indicates that the 21-item HIB-SF-CA is comparable to the original 46-item HSIB in measuring grief and personal growth in this population.

Emotional symptoms and family functioning in caregivers of children with newly diagnosed leukemia/lymphomas and solid tumors: Short-term changes and related demographic factors.

BACKGROUND: Pediatric oncology diagnoses are distressing to caregivers. However, researchers have not investigated the impact that the type of cancer diagnosis has on caregiver anxiety, depression, distress, and family functioning. The purpose of this study was to longitudinally investigate the early trajectory of caregiver psychological symptoms of anxiety, depression, distress, and family functioning near diagnosis and 6 months later by cancer type, and to examine the demographic factors that may be associated with caregiver emotional and family functioning outcomes. METHODS: Caregivers (n = 122) of children with a recent diagnosis of leukemia/lymphoma or solid tumor completed self-report measures of psychological and family functioning (Hospital Anxiety and Depression Scale, Distress Thermometer, and Family Environment Scale). RESULTS: In general, caregivers endorsed elevated psychological symptoms at the time of diagnosis, which decreased 6 months later. Caregivers of children with solid tumors endorsed greater anxiety across time than caregivers of children with leukemia/lymphoma did. In addition to caring for a child with a solid tumor, female sex, non-White ethnicity, and non-English language spoken in the home were factors associated with anxious and depressive symptoms and poorer family functioning. CONCLUSION: When creating psychosocial interventions for families of children with cancer, the unique demands of solid tumor treatments, the caregiver's sex, and cultural characteristics must be considered to promote coping, resiliency, and problem-solving skills around the time of diagnosis, particularly in more vulnerable families.

Psychosocial difficulties identified by health care providers as they predict pain-related quality of life in children with cancer.

This study examined the predictive validity of the Psychosocial Care Checklist (PCCL), a psychosocial screener completed by a pediatric cancer health care provider (HCP), on child pain-related and nausea-related quality of life (QOL), and whether these associations are moderated by family psychosocial risk (Psychosocial Assessment Tool, PAT). Caregivers (N = 122) of children newly diagnosed with cancer and 62 HCPs (11 social workers, 17 nurses, 34 oncologists) at two Canadian sites participated. Near diagnosis (T1) and six months later (T2), caregivers reported on child QOL and family psychosocial risk, which was categorized as universal (typical distress), targeted (targetable distress), or clinical (severe distress). HCPs completed the PCCL at T1 and T2. HCP identification of more psychosocial problems in PCCL at T1 predicted reduced child pain-related (but not nausea-related) QOL at T2 among children with universal risk. The PCCL scores did not predict pain-related QOL in families with higher psychosocial needs (i.e., targeted and clinical). HCPs may have difficulty identifying psychosocial problems among families with high risk in a manner that predicts child's pain-related QOL. A hybrid model of psychosocial screening that includes both HCP and caregiver reports is recommended to best match family problems and interventions to improve QOL.

Healthcare provider utility ratings of a psychosocial screening summary: from diagnosis to 6 months.

BACKGROUND: Psychosocial screening has been proposed as a core standard of care in pediatric oncology. However, there has been limited application of this standard thus far. Understanding healthcare provider (HCP) attitudes towards psychosocial screening is an important element towards furthering implementation initiatives of standard screening practices in pediatric oncology. OBJECTIVE: To compare HCP perceptions of the utility of a psychosocial risk summary by discipline (oncologist, nurse, social worker), risk level (Universal, Targeted, Clinical) derived from the Psychosocial Assessment Tool (PAT), and time (shortly after a child's diagnosis [T1] and 6 months later [T2]). METHOD: All participating HCPs (oncologists, nurses, social workers) were asked to rate how useful they found the psychosocial risk summary using a visual analogue scale (VAS). RESULTS: The psychosocial risk summary was perceived as equally useful across providers (oncologists, nurses, social workers) and PAT risk levels at T1. At T2, the psychosocial risk summary was perceived as more useful by oncologists and nurses than social workers, and summaries indicating elevated risk were perceived as more useful than those indicating low risk. Overall, healthcare providers reported greater utility of psychosocial risk summary near diagnosis compared with 6 months later, largely driven by lower utility ratings reported by social workers at T2. CONCLUSION: Understanding perceived utility and factors affecting perceived utility is a key component to designing effective implementation strategies for systematic psychosocial screening. Active engagement of HCPs in the screening process is critical in improving implementation of psychosocial screening throughout pediatric cancer treatment.

Quality of life in pediatric oncology patients, caregivers and siblings after psychosocial screening: a randomized controlled trial.

OBJECTIVE: We evaluated whether conducting psychosocial screening using a validated measure (the Psychosocial Assessment Tool, PAT) and providing a summary of PAT results to the patient's treating team improves quality of life (QOL) in newly diagnosed patients with cancer, their caregivers and siblings, in general, and in relation to the initial family psychosocial risk. METHODS: Families were randomly allocated to an intervention (IG, treating team received PAT summary describing low, medium, or high psychosocial risk) or control group (CG, no summary provided to treating team) in two Canadian pediatric cancer centers. Caregivers (N = 122) of children newly diagnosed with cancer, patients (n = 36), and siblings (n = 25) completed QOL assessments at 2-4 weeks (T1) and 6 months post-diagnosis (T2). Caregivers also completed PAT and proxy QOL for patient and sibling. RESULTS: In general, patient-proxy total QOL improved in IG compared to CG over time but only for high psychosocial risk patients (p < .05). Patient proxy cancer-related QOL improved over time regardless of group allocation; caregiver QOL also improved over time (ps < .05). CONCLUSION: This study demonstrated the benefits of psychosocial screening results only on proxy patient QOL outcomes with high psychosocial risk near diagnosis. Evaluating QOL benefits in pediatric oncology patients is critical for establishing the clinical value of psychosocial screening. CLINICAL TRIAL REGISTRATION NUMBER: NCT02788604 (REGISTERED WITH HTTPS://CLINICALTRIALS.GOV/CT2/SHOW/NCT02788604 ).

Engaging Fathers in Pediatric Palliative Care Research.

Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers' desire to gain from study participation either for themselves or others, perception of the study's importance, sense of appreciation for the study's focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers' appraisal of fathers' lack of well-being, bereaved fathers' self-reported poor coping and the inability to locate and contact fathers, particularly after a child's death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing "father-focused" studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers' contact information.

"A change in perspective": Exploring the experiences of adolescents with hereditary tumor predisposition.

BACKGROUND: Hereditary tumor predisposition syndromes (HTPSs) are being recognized more frequently in the etiology of pediatric cancer. Previous research indicates that disclosure of tumor susceptibility is a significant event in adolescents' lives. Insight into adolescents' adjustment to knowledge of their syndromes can guide healthcare delivery, particularly genetic counseling. This study explored the experiences of adolescents with hereditary tumor predisposition and their perceptions of living at risk. METHODS: Seven adolescents, ages 14 to 17, representing six different childhood-onset HTPSs, were purposively sampled and interviewed using a study-specific semistructured interview guide. We explored the disclosure process, support systems, and the perceived benefits and harms of knowledge of hereditary tumor susceptibility. Interview transcripts were analyzed via interpretive description. RESULTS: Three major themes emerged from the data: (1) The benefits of knowledge outweigh the harms; (2) context surrounding genetic testing must be recognized; and (3) self-concept is influenced but not defined by tumor risk. CONCLUSIONS: We conclude that adolescents recognize the challenges associated with awareness of tumor predisposition but may also identify positive aspects in their experiences, reflecting a changed life perspective. Results of this exploratory study suggest strategies that can guide pretest and posttest genetic counseling of adolescents for HTPSs, facilitating the adaptive incorporation of genetic information into an adolescent's self-concept.