The psychological impact of genetic testing in childhood cancer: A systematic review.

OBJECTIVE: Cancer predisposition syndromes are being more frequently recognized in the etiology of pediatric oncology and genetic-related technologies are evolving rapidly, leading to an increasing availability of genetic testing for families. This systematic review assessed the psychological impact of genetic testing on children and parents in the context of childhood cancer. METHODS: Searches were performed using three databases (Web of Science, Pubmed and Embase) to identify relevant empirical studies. Following Cochrane guidelines, we screened 3838 articles and identified 18 eligible studies, representing the perspectives of children and/or parents. RESULTS: The included studies described the impact of genetic testing in different contexts (e.g. predictive testing and diagnostic testing) and in different subgroups, (e.g. carriers and non-carriers). Overall, the studies did not identify clinically-relevant long-term increases in negative emotions (depression, anxiety, distress, uncertainty, guilt) as a result of genetic testing. Negative emotions were typically time-limited and generally occurred in families with particular characteristics (e.g. those with a history of multiple cancer diagnoses, families receiving an unfavorable result for one child and a favorable result in siblings, and those with pre-existing mental health difficulties). Positive emotions (hopefulness, relief and peace of mind) were also reported. Knowing their genetic risk status appeared to help to foster empowerment among families, regardless of the result and any associated emotions. CONCLUSIONS: Genetic testing in pediatric oncology does not appear to cause significant additional harm and can lead to positive outcomes. Clinicians need to be especially attentive when counseling families at increased risk of distress.

Protective factors enhancing resilience in children of parents with a mental illness: a systematic review.

Objectives: A systematic review was conducted to (1) investigate protective factors enhancing resilience in children of parents with a mental illness (COPMI), and (2) examine theoretical and methodological issues in the existing literature. Method: Following guidelines for systematic reviews, searches were performed using Web of Science, Pubmed and Embase. After screening 5,073 articles 37 fulfilled inclusion criteria and were extracted for review. Results of the present review indicate that there are several ways to help build resilience in COPMI. More specifically, five protective factors emerged from the reviewed literature: Information, Support, Family functioning and Connectedness, Child coping, and Parenting. Discussion: Research on protective factors in children confronted with parental mental illness is still scarce and for some factors no clear conclusions can be drawn based on the available evidence. To further our understanding of the building blocks and underlying mechanisms of resilience in COPMI, additional rigorously designed studies are needed.

Survey Research With Families in the Context of Pediatric Chronic Health Conditions: Key Considerations and Future Directions.

Self-report family functioning measures play a critical role in advancing our understanding of how families are impacted by, and adapt to, the demands of childhood health conditions. In this article, we present key considerations when conceptualizing, assessing, and analyzing dynamic family processes in research; discuss related implications for selecting instruments; and provide an update on the evidence base of self-report family functioning measures. Researchers need to consider theory, definitions of the family, informants, instruments, and procedural and data analytic issues when designing family research. Examples of questionnaires assessing general family functioning, dyadic relationships, and family functioning within the context of pediatric health conditions are provided. Additional evidence of validity, reliability, clinical utility, and cultural sensitivity of these measures is needed within pediatric chronic illness populations. Future research should include multiple family members and utilize varied assessment methods to obtain a comprehensive understanding of family functioning in the context of pediatric health conditions.

Siblings Dealing with Pediatric Cancer: A Family- and Context-oriented Approach.

Background: Pediatric cancer is a severe life-threatening disease that poses significant challenges to the life of the siblings. Based on the social ecology model, the current study is aimed at exploring the association between intrafamilial (family functioning, family support) and contextual (network support) resources, and the individual adjustment of siblings facing cancer in their brother/sister. Methods: Participants were 81 siblings of children with leukemia or non-Hodgkin lymphoma. The mean siblings' age was 10.32 years. Siblings completed the Family Environment Scale, the Social Support Questionnaire for Children, the Situation-Specific Emotional Reactions Questionnaire, and the Pediatric Quality of Life Inventory. Data were analyzed using a multi-level approach. Results: Family functioning, family support, and network support proved to be related to siblings' cancer-related emotional reactions post-diagnosis. In addition, the present study suggests taking into account the gender of the ill child and the age of the siblings. Discussion: Our findings led to the conclusion that resources at both the intrafamilial level and the contextual level are important for explaining sibling adjustment post-diagnosis. Interventions targeting the sibling, the family, and the external network are warranted to enhance sibling adjustment.

The family practice of support-giving after a pediatric cancer diagnosis: A multi-family member interview analysis.

PURPOSE: Pediatric cancer presents many challenges to the life of the child diagnosed with cancer and his/her family. Among the studies investigating risk and protective factors, social support has emerged as an important construct. However, little is known on how family members support each other in this particular context. METHOD: In order to further explore this process, interviews were performed separately with mothers, fathers and siblings. For the purpose of this study (as this is part of a larger project), data from four families in which both parents and at least one sibling participated, were used. Multi Family Member Interview Analysis was used as the methodological framework to analyze the individual interviews, allowing a detailed and systematic analysis of shared family experiences. RESULTS: The analysis of the data revealed three themes: Being together matters: the families identified the need of being physically together; Finding support in (not) talking: the complexity of sharing emotions was explained and Working together as a team: the families described working together as a team in order to get everything organized. CONCLUSIONS: This study broadens our understanding of the interpersonal process of family support-giving when facing pediatric cancer. When meeting with families, families should be invited as a unit in order to best capture family level experiences. Also, clinicians should be sensitive to the different cancer-related communication needs within the family (i.e., the need to talk or not to talk) and incorporate this knowledge into their care.

Family Members Dealing With Childhood Cancer: A Study on the Role of Family Functioning and Cancer Appraisal.

OBJECTIVES: Childhood cancer is a life-threatening disease that poses significant challenges to the life of the diagnosed child and his/her family members. Based on the ABCX-model, the aim of the current study was to explore the association between family functioning, cancer appraisal and the individual adjustment of patients, parents and siblings. METHODS: Participants were 60 children with leukemia or non-Hodgkin lymphoma, 172 parents and 78 siblings (115 families). Time since diagnosis varied from zero to 33 months. Patients, parents and siblings completed the Family Environment Scale (FES), Perceived Stress Scale, Situation-Specific Emotional Reactions Questionnaire and Pediatric Quality of Life Inventory/Maudsley Marital Questionnaire. RESULTS: Family functioning and the appraisal of the cancer diagnosis proved to be related to patients', parents' and siblings' cancer-related emotions and quality of life post-diagnosis. In addition, family members differed in their perception of some family functioning domains, the appraisal of the cancer diagnosis, positive feelings and quality of life. DISCUSSION: Our findings led to the conclusion that family functioning and the appraisal of the cancer diagnosis are important for the individual adjustment of patients, parents and siblings when facing a diagnosis of cancer in the child. Differences across members within one family and differences between families speak to the need of screening all family members and intervening at the level of individual as well as the family unit.

Couples Dealing With Pediatric Blood Cancer: A Study on the Role of Dyadic Coping.

Objective: Pediatric cancer is a life-threatening disease that poses significant challenges to the ill child and his/her parents. Among the studies investigating risk and protective factors for the individual and relationship adjustment of parents being confronted with pediatric cancer, couple factors - such as dyadic coping - gained little research attention. Therefore, the aim of the current study was to explore the association between dyadic coping and individual/relationship outcomes of parents in the context of pediatric cancer. Methods: Participants were 59 couples of children diagnosed with leukemia or Non-Hodgkin lymphoma. Time since diagnosis varied from diagnosis to 20 months. Both parents completed the DCI-short, DASS21, PIP, and MMQ. Results: Positive dyadic coping (i.e., supportive and common dyadic coping) and negative dyadic coping proved to be related to individual and relational outcomes of parents facing cancer in their child. In addition, while men and women reported to be equally satisfied with their partner and their sexual relationship, women reported higher levels of individual maladjustment. Conclusion: Our findings led to the conclusion that dyadic coping is important for both individual as well as relationship outcomes of parents when facing a diagnosis of cancer in their child. When meeting with families, both partners should be invited as a unit in order to best capture couple level experiences. Also, clinicians should be sensitive to relational and sexual issues besides individual issues, taking into account evidence-based standards for psychosocial care in pediatric oncology.

Family Adjustment When Facing Pediatric Cancer: The Role of Parental Psychological Flexibility, Dyadic Coping, and Network Support.

OBJECTIVES: Pediatric cancer is a life-threatening disease that poses significant challenges to the life of all family members (diagnosed child, parents, and siblings) and the family as a whole. To date, limited research has investigated family adjustment when facing pediatric cancer. The aim of the current study was to explore the role of protective factors at the individual (parental psychological flexibility), intrafamilial (dyadic coping) and contextual level (network support) in explaining family adjustment as perceived by parents of children with leukemia or non-Hodgkin lymphoma. In addition, we were interested to see whether these protective factors could be predictive for family adjustment at a later time point. METHOD: Participants were 70 mothers and 53 fathers (80 families) of children with leukemia or non-Hodgkin lymphoma. Mean time since diagnosis was 5.26 (T1) and 18.86 (T2) months post-diagnosis. Parents completed the Acceptance and Action Questionnaire II (to assess psychological flexibility), Dyadic Coping Inventory, a network support questionnaire, Impact on Family Scale and the Family Adjustment Scale. Both concurrent and prospective association models were tested. RESULTS: Psychological flexibility, dyadic coping and network support proved to be cross-sectionally and positively related to parents' perception of family adjustment post-diagnosis; psychological flexibility and dyadic coping proved to predict better family adjustment over time. CONCLUSION: Our findings led to the conclusion that protective factors at all three levels (individual, intrafamilial and contextual) are important for explaining family adjustment as perceived by parents facing a diagnosis of cancer in their child. Interventions targeting the individual, couple, as well as family level are warranted to enhance family adjustment.

Siblings' Experiences of Everyday Life in a Family Where One Child Is Diagnosed With Blood Cancer: A Qualitative Study.

BACKGROUND: Childhood cancer not only presents challenges to the life of the child with cancer but also to the siblings' daily family life. The aim of the current study was to gain a better understanding of siblings' experiences of living in a family where one child has been diagnosed with blood cancer. METHOD: Ten siblings of children with leukemia or non-Hodgkin lymphoma completed a semistructured interview about their everyday family life experiences postdiagnosis. The verbatim transcripts of the interviews served as the data for an interpretative phenomenological analysis. RESULTS: The results showed that overall the siblings experienced a continuity in many aspects of their family life: they still experienced their family as an important source of support and information/communication, as warm and loving and as a safe harbor where family members aim to protect each other. However, at the same time, the participating siblings also expressed that some things felt unmistakably different postdiagnosis: They felt that their family as a whole had been ripped apart, with a greater focus on the diagnosed child and changing responsibilities for each family member. CONCLUSION: This study informs parents and clinicians about the daily family life experiences from the siblings' perspective, a perspective that is often overlooked. A focus on challenges as well as continuities within family life, the wish for connection expressed by the siblings, and the uniqueness of every sibling's experiences is what can be taken away from this study by psychosocial workers in the field.

Parents' Perspectives of Changes Within the Family Functioning After a Pediatric Cancer Diagnosis: A Multi Family Member Interview Analysis.

Pediatric cancer is a life-threatening disease that challenges the life of the diagnosed child, the parents, and possible siblings. Moreover, it also places considerable demands on family life. The aim of this study was to explore changes in the family functioning after a pediatric cancer diagnosis. Ten couples who had a child with leukemia or non-Hodgkin lymphoma were interviewed individually about their experiences. Interviews were semistructured, and the data were analyzed using Multi Family Member Interview Analysis. Three themes emerged from the data: (a) Family Cohesion: Strengthened Versus Fragmented; (b) Educational Norms and Values: Overindulgence Versus Being Stricter, and (c) Normality: Loss Versus Preservation. The conflicting dynamics present in these emerging themes exemplify the complexity of this process of family adaptation. This study illustrates the need to take into account the family level, as well as the conflicting feelings parents may experience after a pediatric cancer diagnosis.

Systematic Review: Associations Between Family Functioning and Child Adjustment After Pediatric Cancer Diagnosis: A Meta-Analysis.

Objectives: A systematic review and meta-analysis was conducted to investigate associations between family functioning and child adjustment (patient/siblings) after pediatric cancer diagnosis. Methods: Database searches were performed using Web of Science, Pubmed, Cochrane, PsycInfo, and Embase. After screening 5,563 articles, 35 were identified regarding this topic; 30 contributed data for meta-analyses. Pearson's r correlations were the effect of interest. Omnibus and family functioning domain-specific random-effects meta-analyses were conducted. Data are depicted in forest plots. Results: A statistically significant association was found between family functioning and child adjustment (patient/siblings) after cancer diagnosis (r = 0.19; 95% CI: 0.13­0.24). Greater family cohesion, expressiveness, and support and less family conflict were each associated with better child adjustment outcomes. Conclusions Family functioning is associated with patient and sibling adjustment after pediatric cancer diagnosis. Limitations in the existing literature preclude strong conclusions about the size of these effects and potential moderators.

Couple functioning after pediatric cancer diagnosis: a systematic review.

OBJECTIVES: A systematic review was conducted to (1) investigate couple functioning after a pediatric cancer diagnosis and (2) examine theoretical and methodological tendencies and issues in this literature. METHODS: Searches of Web of Science, PubMed, Cochrane, PsycINFO, and Embase resulted in inclusion of 32 qualitative, quantitative, or mixed-method papers. Findings of these papers were extracted for summary. RESULTS: Most couples adapt well to the crisis of a pediatric cancer diagnosis in domains such as emotional closeness, support, marital satisfaction, and general marital adjustment. However, most experience difficulties in the domain of sexual intimacy, and reports on conflict are mixed across qualitative and quantitative studies. CONCLUSIONS: This review illustrates the need for future research with a greater focus on the impact of a pediatric cancer diagnosis on the couple's functioning, conducted with the use of appropriate theoretical frameworks and based on both partners' reports. Improvements in research are needed to best inform couple-based interventions.

Systematic Review: Family Resilience After Pediatric Cancer Diagnosis.

OBJECTIVES: A systematic review was conducted to (1) investigate family resilience in the context of pediatric cancer, and (2) examine theoretical, methodological, and statistical issues in this literature. Family resilience was operationalized as competent family functioning after exposure to a significant risk. METHODS: Following guidelines for systematic reviews, searches were performed using Web of Science, Pubmed, Cochrane, PsycInfo, and Embase. After screening 5,563 articles, 85 fulfilled inclusion criteria and were extracted for review. RESULTS: Findings indicated that most families are resilient, adapting well to the crisis of cancer diagnosis. However, a subset still experiences difficulties. Methodological issues in the current literature hamper strong nuanced conclusions. CONCLUSIONS: We suggest future research with a greater focus on family resilience and factors predicting it, based on available theory, and conducted with attention toward unit of measurement and use of appropriate statistical analyses. Improvements in research are needed to best inform family-based clinical efforts.