Search

Purpose: Receiving a cancer diagnosis for young people is likely to adversely impact the individual's quality of life. Mindfulness-based interventions (MBIs) are an emerging strategy used to improve psychosocial well-being. However, challenges have been reported in relation to adherence and accessibility of face-to-face mindfulness programs among young people. This study examined the feasibility and acceptability of a mindfulness-based interactive e-Book to improve psychosocial well-being of young people with cancer. Methods: Concurrent mixed methods approach with a pre-intervention-post-intervention survey and semistructured interviews evaluated the feasibility and acceptability of a MBI delivered over a 6-week period, and its effect on psychosocial well-being of young people with cancer 15 to 24 years of age. Results: Of the 31 young people, both survivors and on active treatment, enrolled in the study, 20 (64.5%) completed the post-intervention survey. Textual data and interviews (n = 3) revealed that young people enjoyed the intervention and found it useful and easy to navigate, but wanted more attention paid to cancer-specific stressors, as well as opportunities for face-to-face or online interactions. Psychosocial well-being measures demonstrated a statistically significant decrease in depressive symptoms (2.35 to 1.25, p = 0.03) and psychological distress (23.63 to 19.79, p = 0.03), along with nonsignificant increases in mindfulness (20.05 to 22.9, p = 0.08) and quality of life (62.0 to 69.1, p = 0.13). Conclusion: Young people found the self-help MBI, delivered in an interactive e-Book platform, useful and acceptable. There were psychosocial benefits, although recruitment and retention were study challenges and can be improved in future research. [ABSTRACT FROM AUTHOR]

People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools. [ABSTRACT FROM AUTHOR]

Objective: Adolescents and young adults (AYAs) diagnosed with cancer commonly experience elevated psychological distress and need appropriate detection and management of the psychosocial impact of their illness and treatment. This paper describes the multinational validation of the Distress Thermometer (DT) for AYAs recently diagnosed with cancer and the relationship between distress and patient concerns on the AYA‐Needs Assessment (AYA‐NA). Methods: AYA patients (N = 288; 15–29 years, Mage = 21.5 years, SDage = 3.8) from Australia (n = 111), Canada (n = 67), the UK (n = 85) and the USA (n = 25) completed the DT, AYA‐NA, Hospital Anxiety Depression Scale (HADS) and demographic measures within 3 months of diagnosis. Using the HADS as a criterion, receiver operating characteristics analysis was used to determine the optimal cut‐off score and meet the acceptable level of 0.70 for sensitivity and specificity. Correlations between the DT and HADS scores, prevalence of distress and AYA‐NA scores were reported. Results: The DT correlated strongly with the HADS‐Total, providing construct validity evidence (r = 0.65, p < 0.001). A score of 5 resulted in the best clinical screening cut‐off on the DT (sensitivity = 82%, specificity = 75%, Youden Index = 0.57). Forty‐two percent of AYAs scored at or above 5. 'Loss of meaning or purpose' was the AYA‐NA item most likely to differentiate distressed AYAs. Conclusions: The DT is a valid distress screening instrument for AYAs with cancer. The AYA‐POST (DT and AYA‐NA) provides clinicians with a critical tool to assess the psychosocial well‐being of this group, allowing for the provision of personalised support and care responsive to individuals' specific needs and concerns. [ABSTRACT FROM AUTHOR]

Abstract Background A cancer diagnosis is 2.9 times more likely to occur during the adolescent and young adult years than in younger children. This spike in incidence coincides with a life stage characterised by psychological vulnerability as young people strive to attain numerous, critical developmental milestones. The distress young people experience after cancer treatment seriously jeopardises their ability to move into well-functioning adulthood. Methods/Design This article presents the protocol of the Recapture Life study, a phase II three-arm randomised controlled trial designed to evaluate the feasibility and efficacy of a new intervention in reducing distress and improving quality of life for adolescent and young adult cancer survivors. The novel intervention, “ReCaPTure LiFe” will be compared to a both a wait-list, and a peer-support group control. Ninety young people aged 15–25 years who have completed cancer treatment in the past 1–6 months will be recruited from hospitals around Australia. Those randomised to receive Recapture Life will participate in six, weekly, 90-minute online group sessions led by a psychologist, involving peer-discussion around cognitive-behavioural coping skills (including: behavioural activation, thought challenging, communication and assertiveness skills training, problem-solving and goal-setting). Participants randomised to the peer-support group control will receive non-directive peer support delivered in an identical manner. Participants will complete psychosocial measures at baseline, post-intervention, and 12-months post-intervention. The primary outcome will be quality of life. Secondary outcomes will include depression, anxiety, stress, family functioning, coping, and cancer-related identity. Discussion This article reviews the empirical rationale for using group-based, online cognitive-behavioural therapy in young people after cancer treatment. The potential challenges of delivering skills-based programs in an online modality are highlighted, and the role of both peer and caregiver support in enhancing the effectiveness of this skills-based intervention is also discussed. The innovative videoconferencing delivery method Recapture Life uses has the potential to address the geographic and psychological isolation of adolescents and young adults as they move toward cancer survivorship. It is expected that teaching AYAs coping skills as they resume their normal lives after cancer may have long-term implications for their quality of life. Trial Registration ACTRN12610000717055

Although illness perceptions have significant implications for psychological morbidity in those diagnosed with a physical illness, the strength of this relationship in their family members remains understudied. The validity of findings is dependent on the quality of the instruments used; therefore, it is essential that psychometrically robust measures of illness perceptions are available. The purpose of this systematic review was to identify, assess and compare the psychometric properties of instruments designed to measure illness perceptions in family members of individuals with chronic physical illnesses. A systematic search was conducted using MEDLINE, PubMed, CINAHL, Scopus and PsycINFO databases, and supplemented with forward and backward searches. Studies were included in the review if they described the development, adaptation or psychometric evaluation of an instrument designed to measure illness perceptions in family members of an individual with a chronic physical illness. The methodological quality of included studies was assessed using the COSMIN Risk of Bias checklist. The psychometric quality of instruments was evaluated using published quality assessment criteria. Eleven articles describing nine different instruments were included in the review. Almost all instruments were designed for parents of a child with a chronic illness. There was wide variation in the quality of methods used to develop, adapt or evaluate the instruments, and missing information restricted the evaluation of psychometric properties. Further validation is needed for all instruments before meaningful conclusions can be drawn. Findings indicate that measurement of illness perceptions in children or siblings of an individual with a chronic physical illness has been largely ignored. Future research addressing this gap would be an important addition to the current body of work examining illness perceptions in family members. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this study was to examine how cancer‐related fertility concerns impact on couple relationships from the perspectives of people with cancer (PWC) and partners of people with cancer. Methods: A qualitative research design was used, drawing data from open‐ended responses to a survey and in‐depth individual interviews. Eight hundred and seventy‐eight PWC (693 women, 185 men) and 144 partners (82 women, 62 men), across a range of tumour types and age groups, completed a survey, and 78 PWC (61 women and 17 men) and 26 partners (13 women and 13 men), participated in semi‐structured interviews. Results: Thematic analysis identified that many PWC and partners experience a 'double burden', manifested by cancer‐related fertility concerns creating relational stress, changes to couple sexual intimacy and feelings of inadequacy when forming new relationships. However, many participants adopted strategies to facilitate coping with infertility or fertility concerns. This included acceptance of infertility and privileging of survival, focusing on relationship growth, optimism and nurturing in other ways. Conclusion: Cancer‐related fertility concerns can have a significant impact on couple relationships. Psychological support from clinicians may facilitate couple coping, as well as help to address concerns about future relationships for un‐partnered people with cancer. [ABSTRACT FROM AUTHOR]