Associations between parental depression, communication, and self-worth of siblings bereaved by cancer.

A child's death from cancer may increase the risk for poor self-worth in bereaved siblings. Furthermore, bereaved parents may experience depressive symptoms and communicate differently with their surviving children. However, limited research has examined family factors associated with self-worth in bereaved siblings. Thus, we examined: (a) differences in parental depressive symptoms, parent-child communication, and sibling self-worth between bereaved and nonbereaved families and (b) indirect effects of parental depressive symptoms and communication quality on the association between bereavement and sibling self-worth. Bereaved parents and siblings were recruited 3-12 months after a child's death from cancer. Bereaved (n = 72) and nonbereaved families of classmates (n = 58) completed home-based questionnaires upon enrollment (T1), and 48 bereaved and 45 nonbereaved families completed 1-year follow-up (T2). Relative to controls at T1 and T2, bereaved mothers, but not fathers, reported more depressive symptoms. Bereaved siblings reported poorer maternal and similar paternal communication, and similar levels of self-worth compared to controls. Both cross-sectional and longitudinal serial mediation models for mothers were significant. Bereaved mothers were at greater risk for depressive symptoms, which adversely affected sibling self-worth over time through disrupted mother-child communication. The father sample was limited, but the cross-sectional model was nonsignificant. Mothers and fathers may grieve differently and may require different therapeutic approaches. Family-centered interventions should target bereaved mothers' emotional adjustment and communication to enhance sibling self-worth. Additionally, clinicians should bolster other sources of support for bereaved siblings to promote adaptive outcomes. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

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.

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.

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.

Perspectives and Experiences of Parents and Adolescents Who Participate in a Pediatric Precision Oncology Program: "When You Feel Helpless, This Kind of Thing Is Very Helpful".

PURPOSE: The SickKids Cancer Sequencing (KiCS) Program, launched in 2016, evaluates the clinical utility of paired tumor/germline Next-Generation Sequencing (NGS) in pediatric oncology patients with hard-to-cure and rare cancers. In anticipation of further widespread adoption of NGS, we aimed to characterize the experiences and perspectives of adolescents and parents of patients who have already undergone NGS evaluation, focusing on the psychosocial impact and personal utility. METHODS: Parents of patients with pediatric cancer and adolescent patients who have participated in KiCS were invited to participate in semistructured interviews. Transcripts were analyzed using an inductive content analytic approach. RESULTS: Of 45 individuals invited, 22 parents and 10 adolescents were interviewed (71% response rate). Prominent psychosocial themes were low distress, relief, and sense of control; some expressed fear of the unknown. In exploring constructs of personal utility, parents highlighted hope for treatment options despite low expectations for results with clinical impact, whereas adolescents articulated altruistic motivations and less hope for personal clinical benefit. Bringing closure and answering the question of why the cancer occurred was a salient theme among both groups. Both parents and adolescents find benefit and clear decisional satisfaction with participation. No participants expressed regret. CONCLUSION: This study suggests that parents and adolescents benefit from NGS evaluation beyond the return of clinically relevant results. Our findings lay the framework for future work evaluating the value of NGS in pediatric precision oncology care through assessment of patient-reported outcomes and experiences. These results also guide provision of pre- and post-test education and support, which will facilitate patient-centered delivery of NGS practices.

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.

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.

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.

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.

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.

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.

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).

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.

Social participation and hemophilia: Self-perception, social support, and their influence on boys in Canada.

BACKGROUND: Patients with hemophilia may experience joint damage, which can impair participation, yet few studies have examined the impact hemophilia may have on social participation and quality of life. OBJECTIVES: The aims of this study are to assess the relationship between patient social participation and self-perception, social support, and impact on the family. PATIENTS/METHODS: A random representative sample of 50 boys with hemophilia from The Hospital for Sick Children, Toronto, Canada, completed measures of social participation (Participation Scale for kids), self-perception (Self-Perception Profile for children and adolescents), and social support (Social Support Scale for children). Participants' parents completed Family Impact Module of the Pediatric Quality of Life Inventory. Data were analyzed using Pearson product-moment correlations. RESULTS: Social participation was strongly correlated with self-perception subscales Social Acceptance (r = -0.5, p = <0.001) and Global Self-Worth (r = -0.6, p = <0.001) for all participants. The Athletic Competence subscale was strongly correlated for adolescents only (r = -0.6, p = <0.01). There were strong correlations between social participation and social support from parents (r = -0.6, p = <0.001), teachers (r = -0.5, p = <0.001), and classmates (r = -0.6, p = <0.001) and moderate correlations for support from close friends (r = -0.4, p = <0.01). There were no significant correlations with family impact. CONCLUSION: In the context of a country with unlimited access to safe clotting factor concentrates, boys with hemophilia have few social participation restrictions. Although correlational findings do not represent causality, they suggest that encouragement of social participation may be beneficial in boys with hemophilia to increase self-perception as well as strengthen their social support network.

Protocol for mapping psychosocial screening to resources in pediatric oncology: a pilot randomized controlled trial.

BACKGROUND: A pediatric cancer diagnosis and its treatment can have a detrimental effect on the mental health of children and their families. Screening to identify psychosocial risk in families has been recognized as a standard of care in pediatric oncology, but there has been limited clinical application of this standard thus far. A significant impediment to the implementation of psychosocial screening is the dearth of information on how to translate psychosocial screening to clinical practice, and specifically, how to follow-up from screening results. This manuscript aims to describe a protocol of a new intervention examining the feasibility and acceptability of mapping via a Psychosocial Navigator (PSN) psychosocial screening results to specific recommendations of resources for families based on measured risk for psychosocial distress and mental health symptoms. METHODS: The pilot randomized control trial (RCT) consists of dyads of youth (10-17 years) newly diagnosed with cancer and their primary caregiver. This RCT includes two arms (intervention and control group), with each group completing measurements near diagnosis and 1 year later. After the initial assessment, dyads in the intervention group receive monthly screening results and recommendations from the study PSN that are tailored to these results. The patient's primary healthcare team (nurse, social worker, oncologist) also receive the risk, distress, and mental health results as well as the recommendations from the PSN. DISCUSSION: This study addresses a significant barrier to the implementation of psychosocial screening in pediatric oncology: specifically, the limited knowledge of how to follow-up from screening results. Findings from this pilot will inform a future definitive RCT to test the effectiveness of the intervention on patient and family mental health outcomes. This project has implications for enhancing clinical care in pediatric oncology, as well as other pediatric populations. STRENGTHS AND LIMITATIONS OF THIS STUDY: This is the first study of screening and follow-up using a psychosocial navigator. This study involves both patient and caregiver report. The small sample size necessitates a future larger study to investigate the effects of intervention. TRIAL REGISTRATION: NCT04132856 , Registered 10 October 2019-retrospectively registered.

Neurocognitive outcomes following fetal exposure to chemotherapy for gestational breast cancer: A Canadian multi-center cohort study.

BACKGROUND: Limited knowledge exists on outcomes of children exposed prenatally to chemotherapy for breast cancer (BC). The purpose of this study was to compare long-term neurocognitive, behavioral, developmental, growth, and health outcomes of children exposed in-utero to chemotherapy for BC. METHODS: This is a multi-center matched cross-sectional cohort study involving seven cancer centers across the region of Southern Ontario (Canada), and the Hospital for Sick Children (Toronto, Ontario). Using standardized psychological and behavioral tests, we compared cognitive and behavioral outcomes in children exposed to chemotherapy during pregnancy for BC to age-matched pairs exposed to known non-teratogens. RESULTS: We recruited 17 parent-child pairs and their matched controls. There were more preterm deliveries in the chemotherapy-exposed group compared to controls (p < 0.05). Full Scale IQ of children in the chemotherapy group was significantly confounded by maternal IQ and prematurity. Exposed children born at term were not different in cognitive outcomes. Children from both groups were similar in their developmental milestones, pediatric anthropometric measurements and health problems. There were no cases of autoimmune cytopenia. CONCLUSIONS: This is the first Canadian prospective comparative study designed to assess pediatric cognition following prenatal exposure to chemotherapy for BC. Chemotherapy was not found to be neurotoxic in this cohort and did not affect pediatric health. The decision to plan a preterm birth for initiating or continuing chemotherapy treatment must be taken into consideration in context of pediatric implications. While these results may assist in such decision making, replication with a larger sample is needed for more conclusive findings.

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.

"I'm With my People!": Perceived Benefits of Participation in a Group Social Skills Intervention for Children and Adolescent Survivors of Brain Tumors.

BACKGROUND: Children and adolescent survivors of brain tumors may experience impairments in social competence. OBJECTIVE: This qualitative randomized controlled substudy aimed to investigate the outcomes of a social skills intervention group by interviewing these children and adolescents and their caregivers following group participation. INTERVENTIONS/METHODS: Children and adolescents were randomized to the Social Skills Intervention Program or the attention control group. Using purposive sampling, 12 patients (average age, 11.42 years) and 12 caregivers were interviewed following group participation. The Social Skills Intervention Program consists of eight 2-hour manualized sessions delivered weekly; each session was structured around a social skill (eg, making friends, bullying) through arts and crafts and cognitive-behavioral strategies. The sessions in the control group were structured around daily themes (eg, summer activities) doing arts and crafts. Interviews were analyzed using content analysis. RESULTS: Themes unique to the intervention program included improved self-control and self-acceptance, reduced feelings of sadness, and improved problem solving. Themes common to both groups included group bonding over similar experiences, increased social confidence with peers and family, and reduced acting out. CONCLUSIONS: This study uncovered additional unique intervention effects not captured by quantitative measures: improved self-control and problem solving and benefits of the group experience in general. IMPLICATIONS FOR PRACTICE: Findings support the need for group socialization opportunities for children with brain tumors. Nurses can promote socializing opportunities for children and adolescent survivors of brain tumors during and after medical treatment ends to prevent social competence deterioration.