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Objective: Today, more than 80% of children diagnosed with cancer are expected to survive. Despite the high prevalence of pain associated with the diagnosis and treatment of childhood cancer, there is a limited understanding of how having cancer shapes children's experience and meaning of pain after treatment has ended. This study addresses this gap by exploring childhood cancer survivors' (CCS') experiences of pain from their perspective and the perspective of their parents., Methods: Twenty semi-structured interviews were completed with CCS (50% female; mean age = 13.20 y, range = 8-17 y) and their parents (90% mothers). Data were analyzed using interpretive phenomenological analysis., Results: Analyses revealed three superordinate themes present in the data: (a) pain is a changed experience after childhood cancer; (b) new or ambiguous pains may be interpreted by CCS and parents as a threat of disease recurrence, late effects, or a secondary cancer; and (c) pain interpretation occurs within the broader context of how CCS and parents appraise their cancer experience. Parents generally appraised their child's cancer and pain as more threatening and were influential in guiding their child's interpretations., Conclusions: The cancer experience played an important role in shaping CCS' and their parents' experience and interpretation of pain in survivorship. This study provides novel data to inform the development and refinement of new and existing conceptual models of pain and symptom perception after cancer. The results also point to key areas for future investigation and clinical intervention to address the issue of pain in cancer survivorship., (© 2019 John Wiley & Sons, Ltd.)

Objective: We explore the stability of parental attitudes to the ethical issues raised by the return of genomic research results., Methods: A 19-item questionnaire was mailed to participants in a large genome research consortium 18 months following a baseline survey. We describe the stability of parental attitudes to (a) sharing of genomic research results, (b) endorsement of children in genomic research, (c) responsibilities of researchers, and (d) responsibilities to extended family. We also explore their experience in receiving results., Results: Of 170 original participants, 154 (91%) responded. Most participants expressed positive rights to receive incidental genomic research findings (85%), including when ameliorative therapy was unknown (85%). Only 3% found it acceptable to delegate the decision to return results to an independent committee. Researchers, either with a parent (42%) or physician (17%), were felt to be responsible to convey research results to children when they reach adulthood. Most participants (74%) indicated that results should be shared with potentially affected extended family. These results are very similar to those of the baseline survey. All participants who received genomic results would do so again and reported actions similar to their expressed attitudes., Conclusions: The opinions of parents regarding genomic research remain stable over time. Guidelines on the return of results should incorporate these findings., (© 2015 S. Karger AG, Basel.)

Purpose: To explore parental perceptions and experiences regarding the return of genomic incidental research findings in children with rare diseases., Methods: Parents of children affected by various rare diseases were invited to participate in focus groups or individual telephone interviews in Montreal and Ottawa. Fifteen participants were interviewed and transcriptions were analysed using thematic analysis., Results: Four emergent themes underscored parental enthusiasm for receiving incidental findings concerning their child's health: (1) right to information; (2) perceived benefits and risks; (3) communication practicalities: who, when, and how; and (4) service needs to promote the communication of incidental findings. Parents believed they should be made aware of all results pertaining to their child's health status, and that they are responsible for transmitting this information to their child, irrespective of disease severity. Despite potential negative consequences, respondents generally perceived a favourable risk-benefit ratio in receiving all incidental findings., Conclusions: Understanding how parents assess the risks and benefits of returning incidental findings is essential to genomic research applications in paediatric medicine. The authors believe the study findings will contribute to establishing future best practices, although further research is needed to evaluate the impact of parental decisions on themselves and their child., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

Purpose: We describe parental attitudes toward the return of targeted and incidental genomic research results in the setting of high-risk pediatric cancer and inherited childhood diseases., Methods: A validated 36-item questionnaire was mailed to participants in three large-scale genome research consortia examining attitudes toward receipt of genomic research results and the influence of certainty, severity, and onset of the condition, in addition to responsibilities to extended family and provision of results even after death of the proband., Results: Of the 563 participants who were sent questionnaires, 362 (64%) responded. Most of them stated a positive right to receive results related to the target condition (97%) or to incidental findings (86%); no difference was found in results between participants with cancer and those with orphan diseases. Furthermore, 92% indicated that genomic research for childhood-onset conditions should occur. The majority wanted incidental results predicting susceptibility even to untreatable fatal conditions (83%), to multiple conditions (87%), or to those with uncertain impact (70%). Most felt sibling genomic results showing serious conditions, whether treatable (93%) or not (88%), and/or results discovered after death of the proband should be shared with family (74%)., Conclusion: Many parents of children in pediatric genomic research indicated a strong desire to receive a broader range of results than is described in consensus recommendations. Clear delineation of what will be offered should be established at the time of consent.

Purpose: Research using banked tissue is key to advancing risk-stratification and treatment of children with cancer. Knowledge of parental attitudes to ethical issues arising in tissue banking is very limited but essential in obtaining respectful consent., Methods: One hundred parents of consecutively diagnosed children with cancer were offered a validated 34-item questionnaire., Results: Respondents (n = 54) included 10 of 16 parents of deceased children. The majority (89%; n = 48) would agree to have tissue sent anywhere in the world but prefer pediatric aims (69%). Most (98%; n = 53) would permit genetic research, if it might improve the child's health, and 76% (n = 41) would permit it, even if no impact was anticipated. A minority (41%) would not allow painful, strictly research procedures, while 15% would regardless of the child's dissent. Just over half (54%; n = 29) wish to renew consent if stored tissue is used for another purpose. Most (98%) believe their child should confirm consent by the age of majority, but only 71% believe the mature child should be able to withdraw consent. A minority (n = 40; 74%) claim few or no rights to research profits; 83% believe these should be used to fund childhood cancer research., Conclusions: Parents are very supportive of tissue research, including genetic research. A majority of parents would prefer restricting research to pediatric conditions, and to be informed of results, even if of uncertain significance. These findings may assist Institutional Review Boards in assessing parentally perceived risks of research, and researchers in providing consent elements that support parents and adolescents in making fully informed choices., (Copyright © 2011 Wiley Periodicals, Inc.)

While many researchers accept the principle that participants have a right to receive information learned from their participation in research, there are few studies examining the impact of receiving results on participants. This study was developed to examine the impact on parents of the receipt of individual results of research-based psychological testing of their children. A summary of the child's individual results of standardized measures of language and development was sent by mail with the questionnaire designed to assess the impact of receiving results. Response rate from the mailed questionnaire was 55.6% (n=74/133). Most parents reported the results as helpful and positive. The majority would receive results again. Overall, the sharing of individualized feedback from psychological testing conducted as part of a research study was well accepted by parents. This practice appears ethically permissible with appropriate support options for addressing participant concerns upon receiving the results as well options for clinical follow-up for the child.

Background: Conditions supporting a high quality of consent for pediatric bone marrow transplantation (BMT) are suboptimal given the complexity of the procedure, lack of options, and parent emotional duress. We studied if parents perceived choice when consenting to BMT, if they felt the consent provided was valid, and how the consent process affected them., Methods: Telephone or face-to-face interviews were recorded using a semi-structured interview outline. Interview transcripts were anonymized, and independently analyzed by three reviewers., Results: Twenty parents of twelve children participated, including five bereaved parents. There were no differences in patient transplant characteristics between the eligible and study groups. Divorced or separated parents were underrepresented in the participant group. Fifteen parents felt personally compelled to consent; most (18) denied feeling external medical pressure to do so. All parents felt their consent was valid and most reported adequate levels of freedom, capacity, and information. Expectations formulated during the consent process strongly influenced parents' experience post-BMT. Good communication during consent contributed to trust and therapeutic alliance with physicians following BMT. Late parental stress and anxiety were periodic, but very high in some families., Conclusions: Parents feel consent for pediatric BMT is valid, despite feeling personally compelled to consent. Strategies aimed at nurturing hope and realistic expectations may assist in improving the consent process, while diminishing long-term stressors., ((c) 2006 Wiley-Liss, Inc.)

Research protocols involving children often include psychological testing as part of an assessment battery. Inclusion of such testing raises the question of whether parents (or others) should be offered the individualized results of their children's psychological testing conducted for research purposes. The purpose of this article is to provide a review of the ethical issues and principles associated with individualized feedback of psychological testing conducted for research purposes. Two hypothetical cases are offered to illustrate the complexities of this topic. Detailed recommendations for the management of disclosure of the results of psychological testing in research settings are also proposed.

Purpose: The aims of this study were to map the problems and needs of children with cancer and their families with regard to possible psychosocial interventions, and to do an acceptability study of different ways to provide support., Methods: The authors performed a cross-sectional structured telephone interview with 56 parents of children with cancer and 13 adolescents from these families. On 0 to 10 analog scales, parents and adolescents rated the importance of different needs, how these needs had been met, the acceptability of different ways of providing supportive interventions, how often these ways had been used, and comfort using them., Results: Parents' mean rating of importance of information needs was 9.42, peer social support 7.84, and self-management therapy 9.21. The ratings of how well these needs had been met were 8.05, 5.30, and 7.13, respectively. Both parents and adolescents ranked getting information written on paper highest, preferred to communicate in a face-to-face support group for peer social support, and preferred a therapist for self-management therapy. The comfort ratings for using different ways to provide the interventions were all high, as was access; 89% of families had computers in their homes, 76% had Internet access., Conclusions: The needs for information, peer social support, and self-management therapy are all high. There is still room to meet these needs better. Using paper-based, telephone, computer CD, or an interactive Web-based intervention package all seem to be acceptable and accessible ways to meet the needs and might reduce the risk of families developing psychosocial problems.

Objective: Fear of cancer recurrence (FCR) is a common and distressing psychosocial concern for adult cancer survivors. Data on this construct in child survivors is limited and there are no validated measures for this population. This study aimed to adapt the Fear of Cancer Recurrence Inventory‐Short Form (FCRI‐SF) for survivors of childhood cancer aged 8–18 years (Fear of Cancer Recurrence Inventory—Child version [FCRI‐C]) and their parents (Fear of Cancer Recurrence Inventory—Parent version [FCRI‐P]) to self‐report on their own FCR and to examine the initial psychometric properties. Methods: The FCRI‐SF was adapted through expert panel input and cognitive interviews with child survivors <18 years. The factor structure, internal consistency and construct and criterion validity of the FCRI‐C and FCRI‐P were examined in 124 survivors of childhood cancer (43% female; Mage = 14.58 years, SD = 2.90) and 106 parents (90% mothers). Results: All FCRI‐SF items were retained for the FCRI‐C with simplified language. The internal consistencies of the FCRI‐C (α = 0.88) and FCRI‐P (α = 0.83) were good. Exploratory factor analyses yielded one‐factor structures for both measures. Higher scores on the FCRI‐C and FCRI‐P were associated with greater intolerance of uncertainty and pain catastrophizing. Higher child FCR was also related to more hypervigilance to bodily symptoms. Parents with higher FCR reported contacting their child's doctors and nurses and scheduling medical appointments for their child more frequently. Children reported significantly lower FCR compared to parents. Conclusions: The FCRI‐C and FCRI‐P demonstrated strong reliability and preliminary validity. This study offers preliminary data to support the use of the FCRI‐C and FCRI‐P to measure FCR in survivors of childhood cancer aged 8–18 years and their parents. [ABSTRACT FROM AUTHOR]

Objective: To explore relations between family functioning and child acute pain, including pain ratings, coping, and parent–child behaviors.Methods: Community sample of 171 dyads including one child aged 8–12 years (52% girls) and one parent (79% mothers). Family functioning was assessed via child and parent self-report, and observation during a conflict discussion task. Children and parents rated pain catastrophizing at baseline, and child pain and distress following a cold pressor task (CPT). Parent–child interactions during the CPT were coded for observed behaviors during child pain.Results: Self-report of poorer family functioning predicted greater child and parent pain catastrophizing, and parent distress. Less observed family negativity/conflict and cohesiveness, and greater family focus of problems and parent emotional support predicted more child symptom complaints. Family functioning was not associated with child pain or distress.Conclusions: Family functioning influenced parent and child coping and child behavioral responses, but not the experience, of acute pain. [ABSTRACT FROM AUTHOR]

Secondary findings for adult-onset diseases in pediatric clinical sequencing can benefit parents or other family members. In the absence of data showing harm, it is ethically reasonable for parents to request such information, because in other types of medical decision-making, they are often given discretion unless their decisions clearly harm the child. Some parents might not want this information because it could distract them from focusing on the child's underlying condition that prompted sequencing. Collecting family impact data may improve future policy determinations. [ABSTRACT FROM AUTHOR]

Objectives The cold pressor task (CPT) is an experimental method of inducing pain. Ethical concerns have been raised regarding the nontherapeutic induction of pain in children. The objectives of this study were to describe the ethical challenges and acceptability of the CPT from the perspective of researchers, children and parents. Methods Study 1: 16 researchers completed a survey regarding their experiences obtaining ethical approval and use of the CPT in pediatric research. Study 2: 175 children and 194 parents answered questions about their experiences participating in studies that used the CPT. Results Full ethics board review was generally required. Adverse events were rare and transient. The majority of researchers, children, and parents reported positive experiences with the CPT. Conclusions The CPT is judged by researchers, children, and parents to be an acceptable research method. The CPT can be used ethically in pediatric research with appropriate study safeguards. [ABSTRACT FROM AUTHOR]

When explored separately, child and parent catastrophic thoughts about child pain show robust negative relations with child pain. The objective of this study was to conduct a dyadic analysis to elucidate intrapersonal and interpersonal influences of child and parent pain catastrophizing on aspects of pain communication, including observed behaviours and perceptions of child pain. A community sample of 171 dyads including children aged 8 to 12 years (89 girls) and parents (135 mothers) rated pain catastrophizing (trait and state versions) and child pain intensity and unpleasantness following a cold pressor task. Child pain tolerance was also assessed. Parent-child interactions during the cold pressor task were coded for parent attending, nonattending, and other talk, and child symptom complaints and other talk. Data were analyzed using the actor-partner interdependence model and hierarchical multiple regressions. Children reporting higher state pain catastrophizing had greater symptom complaints regardless of level of parent state pain catastrophizing. Children reporting low state pain catastrophizing had similar high levels of symptom complaints, but only when parents reported high state pain catastrophizing. Higher child and parent state and/or trait pain catastrophizing predicted their own ratings of higher child pain intensity and unpleasantness, with child state pain catastrophizing additionally predicting parent ratings. Higher pain tolerance was predicted by older child age and lower child state pain catastrophizing. These newly identified interpersonal effects highlight the relevance of the social context to children's pain expressions and parent perceptions of child pain. Both child and parent pain catastrophizing warrant consideration when managing child pain. [ABSTRACT FROM AUTHOR]