The impact of enhancing perceived self-efficacy in torture survivors.

BACKGROUND: Perceived self-efficacy (SE) is an important factor underlying psychological well-being. Refugees suffer many experiences that can compromise SE. This study tested the impact of enhancing perceived SE on coping with trauma reminders and distress tolerance in tortured refugees. METHODS: Torture survivors (N = 40) were administered a positive SE induction in which they retrieved mastery-related autobiographical memories, or a non-SE (NSE) induction, and then viewed trauma-related images. Participants rated their distress following presentation of each image. Participants then completed a frustration-inducing mirror-tracing task to index distress tolerance. RESULTS: Participants in the SE condition reported less distress and negative affect, and improved coping in relation to viewing the trauma-related images than those in the NSE condition. The SE induction also led to greater persistence with the mirror-tracing task than the NSE induction. CONCLUSIONS: These findings provide initial evidence that promoting SE in tortured refugees can assist with managing distress from trauma reminders, and promoting greater distress tolerance. Enhancing perceived SE in tortured refugees may increase their capacity to tolerate distress during therapy, and may be a useful means to improve treatment response.

Participation in psychosocial oncology and quality-of-life research: a systematic review.

Quality-of-life and psychosocial oncology studies that have low participation might have less precision, less statistical power, and can have non-response bias. In this systematic Review, we searched MEDLINE, Embase, and PsycInfo, for paediatric studies published in 2010-15 and adults studies published 2014-15. Studies were eligible if they were original studies published in a peer-reviewed journal; recruited children (aged 0-18 years at diagnosis) with cancer or their parents, or adult patients with cancer; and assessed psychosocial outcomes, including quality of life, depression, anxiety, wellbeing, distress, coping, or adjustment as a primary or secondary outcome. We assessed participation reporting quality, calculated percentages of participation achieved, and measured the influence of study design and participant characteristics. We reviewed 311 studies including a total of 87 240 adults, children, and parents. Mean participation across studies was more than 70% (paediatric participation was 72% and adult participation was 74%). Many studies did not report data essential for the assessment of participation, especially for non-respondents. Studies using a longitudinal cohort design had higher participation than randomised trials. In paediatric studies, recruitment of participants at diagnosis, face to face, and with the use of short questionnaires yielded higher participation. Other study design characteristics (method of data collection, who enrolled the participants, and incentives) and patient characteristics (cancer type, patient or parent age, and sex) did not affect participation in either paediatric or adult studies. Researchers can use these data to improve reporting quality and make evidence-based choices to maximise participation in future studies.

Acceptability and feasibility of an e-mental health intervention for parents of childhood cancer survivors: "Cascade".

PURPOSE: The aim of this study was to evaluate the feasibility and acceptability of "Cascade": an online, group-based, cognitive behavioral therapy intervention, delivered "live" by a psychologist, to assist parents of children who have completed cancer treatment. METHODS: Forty-seven parents were randomized to Cascade (n = 25) or a 6-month waitlist (n = 22). Parents completed questionnaires at baseline, 1-2 weeks and 6 months post-intervention. Thirty parents completed full evaluations of the Cascade program (n = 21 randomized to Cascade, n = 9 completed Cascade post-waitlist). RESULTS: Ninety-six percent of Cascade participants completed the intervention (n = 24/25). Eighty percent of parents completed every questionnaire (mean completion time 25 min (SD = 12)). Cascade was described as at least "somewhat" helpful by all parents. None rated Cascade as "very/quite" burdensome. Parents reported that the "online format was easy to use" (n = 28, 93.3 %), "I learnt new skills" (n = 28, 93.3 %), and "I enjoyed talking to others" (n = 29, 96.7 %). Peer-to-peer benefits were highlighted by good group cohesion scores. CONCLUSIONS: Cascade is highly acceptable and feasible. Its online delivery mechanism may address inequities in post-treatment support for parents, a particularly acute concern for rural/remote families. Future research needs to establish the efficacy of the intervention. TRIAL REGISTRATION: ACTRN12613000270718, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12613000270718.

Grandparents of children with cancer: a controlled study of distress, support, and barriers to care.

OBJECTIVE: For families under stress, positive grandparental relationships provide a valued 'safety net'. However, coping with family stressors can place a heavy burden on older individuals who may be experiencing declining health/energy themselves. This mixed-methods study assessed the prevalence of distress in grandparents of children with, and without, cancer, aiming to identify predictors of grandparental distress and quantify their barriers to care. METHODS: Two hundred twenty-one grandparents [87 cancer group; 134 controls; mean age 65.47 years (SD = 6.97); 33.5% male] completed self-report questionnaires assessing distress, anxiety, depression, anger, 'need for help', support use, and barriers to psychosocial care. RESULTS: A higher proportion of grandparents in the cancer group reported clinically relevant distress (32.9% vs. 12.7%; p < 0.001), anxiety (48.8% vs. 23.9%; p < 0.001), depression (24.4% vs. 6.0%; p < 0.001), and anger (23.5% vs. 6.8%; p = 0.001). In the cancer group, distress was higher in grandmothers and in families with fewer siblings. Grandparents rarely accessed evidence-based psychosocial support (<5% in both groups), although grandparents of children with cancer were more likely to seek religious/spiritual support. Barriers to help seeking included lack of knowledge and rurality. Grandparents of children with cancer qualitatively described undisclosed feelings of uncertainty and helplessness and provided advice to other grandparents to facilitate their coping. CONCLUSIONS: Grandparents of children with cancer were clearly more distressed than controls. Grandparents' capacity to support their families may be limited by their own, untreated, distress.

Improving mutation notification when new genetic information is identified in research: a trial of two strategies in familial breast cancer.

PURPOSE: The Kathleen Cuningham Foundation Consortium for Research into Familial Aspects of Breast Cancer (kConFab) is a large-scale research study that notifies participants when new, personally relevant, information is discovered. In 2009, the (kConFab) instituted an intensive notification process to ensure at-risk individuals were effectively notified. This study (i) evaluated the impact of intensive notification on genetic testing uptake; (ii) identified those most likely to undergo testing postnotification; and (iii) identified those most likely to acknowledge that they had been notified. METHODS: Clinical/demographic data were retrieved from the (kConFab) database. Logistic regression analyses were conducted to identify potential predictors of testing uptake and notification acknowledgment using IBM SPSS. RESULTS: A total of 155 of 1,812 individuals underwent testing after standard notification (8.6%). In comparison, 23/291 individuals (7.9%) notified using the "intensive" approach underwent testing (χ(2) = 0.14; P = 0.71). After controlling for notification process, females and participants with a previous cancer were most likely to have undergone testing (P < 0.006). Older individuals (50+ years) were most likely to acknowledge they had been notified (P = 0.038). CONCLUSION: Increasing the intensity of participant follow-up did not increase genetic testing uptake. The challenge to effectively notify participants, and increase the proportion whose risk is managed clinically, remains, particularly for males and individuals unaffected by cancer.Genet Med 2013:15(3):187-194.

Modifying insecure attachment style with cognitive bias modification.

BACKGROUND AND OBJECTIVES: Attachment theory suggests that internal working models developed from early experiences with attachment figures biases cognitive appraisals a person makes of themselves and others. The current paper investigates whether attachment-related interpretative biases can be altered using Cognitive Bias Modification (CBM-I). METHODS: Eighty anxiously attached participants were randomly assigned to receive either secure or insecure CBM-I training. To measure training effects on attachment-related interpretation bias, participants read scenarios involving attachment figures whereby the availability of the attachment figure was undetermined, followed by test sentences that assigned an attachment-secure or -insecure interpretation to the situations. Participants rated the similarity of these sentences to the previously read ambiguous situations. RESULTS: Participants who received secure CBM-I training ascribed higher similarity ratings to secure sentence interpretations of ambiguous scenarios compared to insecure sentence interpretations. Attachment anxiety increased after CBM-I training for those who received insecure training, but did not differ for those who received secure training. LIMITATIONS: This study was limited to healthy participants and did not include clinical participants. These findings need to be replicated by assessing the effects of CBM-I over an extended period. CONCLUSIONS: CBM-I training may provide a viable means of modulating attachment anxiety. If validated with more potent strategies for secure attachment training, this approach could have significant implications for the treatment of affective disorders characterized by insecure attachments.

Protocol for the avatar acceptability study: a multiperspective cross-sectional study evaluating the acceptability of using patient-derived xenografts to guide personalised cancer care in Australia and New Zealand.

INTRODUCTION: Patient-derived xenografts (PDXs) have the potential to transform personalised cancer care, however, little is known about the acceptability of using PDXs to guide treatment decision-making. Given that patient and community preferences can influence satisfaction with care as well as the success of new technologies, we will evaluate the acceptability of PDXs in individuals affected by cancer and community comparisons. METHODS AND ANALYSIS: This comparative cross-sectional study will recruit 323 individuals affected by cancer (cancer survivors (of childhood or adult cancer) and parents of childhood cancer survivors) and 323 community comparisons (adults and parents). We will collect data via structured interviews and questionnaires. To determine the acceptability of PDXs, we will assess five domains: willingness to use PDXs when/if diagnosed with cancer, perceived advantages and disadvantages of PDXs, maximum acceptable out-of-pocket costs per patient, maximum acceptable turnaround time to receive results and maximum acceptable number of mice sacrificed per patient. The primary endpoint will be participants' decisional balance ratio (calculated as participants' advantages ratings divided by perceived disadvantages ratings). ETHICS AND DISSEMINATION: The study protocol has been approved by the South Eastern Sydney Local Health District Human Research Ethics Committee (HREC:12/173) and UNSW Sydney (HC15773). The results will be disseminated in peer-reviewed journals and at scientific conferences. A lay summary will be published on the Behavioural Sciences Unit website.

The conceptualization of emotion regulation difficulties, and its association with posttraumatic stress symptoms in traumatized refugees.

This study investigated the conceptualization of emotion regulation difficulties in a sample of refugees with varying levels of posttraumatic stress (PTS), and examined whether specific emotion regulation difficulties were associated with PTS severity. Refugees were administered an abbreviated version of the Difficulties in Emotion Regulation Scale, the PTSD Symptom Scale - Interview Version, and the Harvard Trauma Questionnaire. Confirmatory Factor Analysis was used to examine model fit for the 6-factor model originally proposed by the developers of the DERS and the more recently proposed 5-factor model that excludes the awareness subscale. Both models displayed adequate fit. After controlling for age, gender, time in Australia, and trauma exposure, the clarity and strategies subscales were significantly associated with PTS severity. The association between impaired emotional clarity and reduced agency related to accessing regulation strategies and PTS severity in this refugee sample highlights the need for further research to assess interventions that target these disruptions in refugees.

Sexual and Romantic Relationships: Experiences of Adolescent and Young Adult Cancer Survivors.

This study examined the quality and satisfaction of sexual/romantic relationships of adolescents/young adults (AYAs) who recently completed cancer treatment. AYAs between 16 and 26 years old (62.5% female) and less than 24 months post-treatment were interviewed using the Psychosocial Adjustment to Illness Scale (PAIS) interview. Of 43 participants, 16 (37.2%) were in a relationship at time of the interview; eight (50%) reported minor relationship/sexual difficulties. AYAs identified emotional support with their partner as positive aspects of their relationships, and described relational conflict associated with communication difficulties and loss of sexual interest. Better understanding the factors that enable healthy relationships warrants further exploration.

'What they're not telling you': a new scale to measure grandparents' information needs when their grandchild has cancer.

OBJECTIVE: To determine the information needs and preferences of grandparents of children with cancer, to identify clinically useful predictors of high information need, and to develop the first validated scale to assess grandparents' information needs regarding their grandchild's cancer. METHODS: Grandparents of children with cancer completed a questionnaire, including a newly developed instrument to measure information needs. RESULTS: Eighty-seven grandparents participated (mean age 65.02 years, range 46-81, 31% male). Grandparents' information needs were high, especially among young and paternal grandparents. Grandparents' greatest need was for information pertaining to their grandchild's chance of survival (81.6% reported "high need"), possible consequences of the child's cancer (81.6%), and phases of their treatment (72.4%). Ninety-three percent endorsed the development of a grandparents' booklet, distributed at diagnosis and available online. CONCLUSIONS: Grandparents of children with cancer desire more information for their own reassurance, to reduce their reliance on 'second-hand' information from their grandchild's parents and to improve the support they provide their families. Grandparents strongly endorse the development of grandparent-targeted educational resources. PRACTICE IMPLICATIONS: Administration of this short, 15-item questionnaire can help staff identify the information needs of grandparents. Findings will inform the development of evidence-based resources for this important (but oft-neglected) population.