ORCID Profile
0000-0002-1686-3252
Current Organisations
Calaber1 Resources
,
CanTeen
Does something not look right? The information on this page has been harvested from data sources that may not be up to date. We continue to work with information providers to improve coverage and quality. To report an issue, use the Feedback Form.
Publisher: SAGE Publications
Date: 22-01-2014
Abstract: The purpose of CanTeen’s E-Mental Health Service for Young People Living With Cancer (YPLWC) is to meet the unique psychosocial needs of young people (12–24 years) in Australia impacted by cancer (either as a patient or family member of someone with cancer). This online platform will provide the primary site where all YPLWC can find information, connect with others going through a similar experience, express their feelings, utilise tools for support and access professional psychosocial support services that will meet their in idual needs. The overall outcome of the service will be to ensure that the YPLWC visiting the site experience optimal psychological wellbeing. Ultimately, the service’s value will be in improving the lives of young people who engage with it and the follow-on effect that this will have on their families and communities in the long-term.
Publisher: Mary Ann Liebert Inc
Date: 04-2018
Abstract: Adolescents and young adults (AYAs) with cancer have unique needs around education and vocation during and after treatment. This narrative review series aims at documenting the unique needs of AYAs from the current literature and at providing recommendations to inform an update of the Australian National Service Delivery Framework for AYAs with Cancer. AYAs with cancer may experience impairments to cognitive, physical, and psychological functioning and health, which can adversely affect their academic grades, peer relationships, and likelihood of entering the workforce. Treatment expenses and time off work can stifle AYAs' financial independence from their parents. The combined effect of disrupted education, vocation, and financial dependence can reduce AYAs' sense of identity. Although support is available in some countries, support efficacy is yet to be clearly established. Continued research is required to deliver successful education and work reintegration programs that build the confidence of AYAs with cancer to achieve their best. Educational and vocational support, as well as financial advice, may improve AYAs' financial security and quality of life during survivorship.
Publisher: Elsevier BV
Date: 10-2016
DOI: 10.1016/J.EJON.2016.06.002
Abstract: To conduct a meta-synthesis of qualitative studies exploring experiences of young cancer patients to identify the overarching concepts that inform future service and research directions. A systematic literature search was conducted, and 51 articles published between January 2004 and March 2014 were collected via CINAHL, Medline and PsycINFO databases. Deductive thematic analysis was conducted to identify major themes, guided by Hermeneutic notions on interpretation. Cancer impacted a wide range of life domains. These impacts were interconnected and bi-directional. The meanings of these impacts were closely related to their unique developmental needs and a social position as youth. Emotional struggles during these radical changes were evident, but efforts to make sense of their experiences and find meaning pervaded. Given the interrelated nature of the cancer challenges young cancer patients experience, there needs to be an emphasis on conducting studies which further refine our understanding of these relationships. This can help to structure effective youth cancer services. Generic informational resources and support services should be tailored so that they have relevance to the young person's life context. The treating team has an important role in fostering young patients' ability to make sense of their experiences by providing developmentally-relevant psychosocial support.
Publisher: Cambridge University Press (CUP)
Date: 09-2010
DOI: 10.1017/S1478951510000052
Abstract: Research into parental loss has led to an understanding of the types of reactions and responses that children, and to a lesser extent adolescents and young adults, have when a parent dies. Only limited studies, however, have directly investigated the psychosocial needs of young people during this period. The aim of the current study was to identify and better understand the needs of adolescents and young adults who have lost a parent to cancer, and to ascertain the extent to which these needs had been met. As the study is exploratory in nature, a qualitative questionnaire was used to explore the needs and unmet needs of adolescents and young adults who have had a parent die of cancer. Sixty-two parentally bereaved young people aged 12–23 participated. The data were thematically analyzed and seven conceptually distinct need themes emerged, namely: support and understanding help coping with feelings to talk to people who have had a similar experience information have a break/have fun space and time to grieve and help with household responsibilities. The research findings will assist health professionals in developing services and interventions which are more responsive to the needs of parentally bereaved young people.
Publisher: Wiley
Date: 27-12-2019
DOI: 10.1002/HPJA.314
Abstract: Given the increasing prevalence of cancer, there is a growing need for health interventions educating in iduals about the disease and its impacts, risk-reduction strategies and how to support others who are affected. School-based programs are a promising medium addressing these issues in adolescents, yet no comprehensive cancer education program exists in Australia. This paper reports on the piloting of a cancer awareness program for Australian students. When Cancer Comes Along is a 90-minute interactive presentation covering cancer's impacts, risk-reduction strategies and how to support those affected. The program was piloted in four Australian secondary schools, with students (N = 113, 13-16 years) and teachers (N = 2) providing feedback via postprogram survey. Participants reported high satisfaction overall (92%-97%) and with each program component (71%-95%), and agreed that the program achieved learning outcomes (72%-95%). Results indicate that When Cancer Comes Along is relevant, engaging and age-appropriate. Participants reported improved understanding of cancer, its impacts, risk-reduction strategies and how to support those affected. A larger-scale evaluation is underway to more comprehensively evaluate program outcomes. SO WHAT?: The program has potential in educating students about various aspects of the cancer experience. It further demonstrates the feasibility and value of addressing psychosocial impacts and support strategies as well as information about cancer risks, elements which have not previously been combined in educational interventions. Equipping adolescents with the knowledge and skills to reduce their cancer risk and support others who are affected has significant health promotion implications for cancer prevention and support provision.
Publisher: JMIR Publications Inc.
Date: 21-12-2018
DOI: 10.2196/11724
Publisher: Mary Ann Liebert Inc
Date: 22-05-2023
Publisher: Wiley
Date: 31-01-2021
DOI: 10.1111/SCS.12822
Publisher: Springer Science and Business Media LLC
Date: 09-09-2015
Publisher: EpiSmart Science Vector Ltd
Date: 12-2018
Publisher: Hindawi Limited
Date: 11-2018
DOI: 10.1111/ECC.12970
Abstract: The impact of a young person's cancer diagnosis extends to siblings, yet support services to address siblings' needs are limited. This study explores healthcare professionals' (HCPs') perspectives on engaging and supporting adolescent and young adult (AYA, 12-25 years) siblings of young cancer patients in hospital settings. Semi-structured interviews with nine HCPs explored participants' views on models of care, engagement and assessment of siblings, available services, barriers to care, and future directions. Participants understood the impact of cancer and need to support AYA siblings, but were unclear how these responsibilities fit in with existing models of care and clinical roles. Siblings' absence from hospitals complicated processes of engagement, assessment and provision of care, challenging some participants to engage siblings outside the clinical context. In the absence of direct contact, HCPs largely relied on patients and parents to report or refer siblings for care. Service and resource limitations further restricted the provision of support to siblings. Despite HCPs' recognition of the need to support siblings, their "invisibility," lack of standardised assessment and service constraints complicate the provision of care in hospital settings. Integrating hospital-based care with community services may better facilitate the engagement and support of AYA siblings.
Publisher: Springer Science and Business Media LLC
Date: 19-09-2018
DOI: 10.1007/S00520-017-3891-5
Abstract: To examine differences in distress and unmet needs between bereaved adolescent and young adult (AYA) offspring who accessed support before and after being bereaved by parental cancer, and to explore aspects of their cancer experience that influenced their help-seeking. Phase 1: Surveys completed by AYAs (11-26 years) bereaved by parental cancer were subjected to analysis of covariance examining differences in distress and unmet needs between those who accessed support before (n = 159) and after (n = 212) parental bereavement. Phase 2: Semi-structured interviews explored the cancer experiences of bereaved offspring (n = 8) and factors that influenced their decision to seek support. Phase 1: There were no significant group differences in distress and unmet needs however, older and female AYAs reported higher levels of distress and unmet needs. Interestingly, in iduals who accessed support pre-bereavement were older on average (M = 17.35 years, SD = 3.26) than those who accessed support post-bereavement (M = 15.73 years, SD = 3.26). Phase 2: Three themes emerged centred on socio-emotional developmental changes during and after the cancer trajectory. These related to: participants' meaning-making and changes in understanding of the cancer experience, changing relationships and desires to fit in, and understanding of their own emotional needs. While no differences were found in unmet needs and distress between those who sought support pre- or post-bereavement, those seeking support pre-bereavement were older on average. Social and emotional development impacts how bereaved offspring access psychosocial support. Awareness of these issues can assist in improving support by ensuring services are age appropriate and families are sufficiently supported.
Publisher: Wiley
Date: 17-08-2016
DOI: 10.1002/PON.3942
Abstract: Young people who have a parent with cancer experience elevated levels of psychological distress and unmet needs. In this study, we examined the associations between demographics, cancer variables and family functioning and levels of distress and unmet needs amongst young people who have a parent diagnosed with cancer. Young people aged 12-24 years with a parent with cancer (n = 255) completed the Offspring Cancer Needs Instrument (unmet needs), the Kessler-10 (distress) and the Family Relationship Index (family functioning), along with measures of demographics and cancer variables (such as age, sex and time since cancer diagnosis). Variables associated with distress and unmet needs (including unmet need domains) were assessed using multiple linear regression. Being female and older, having more unmet cancer needs and poorer family functioning were associated with increased distress. Having a father with cancer, a shorter time since diagnosis and poor family functioning were associated with increased unmet needs. Family conflict and expressiveness were particularly important components of family functioning. Having a parent relapse with cancer was also associated with unmet needs in the domains of practical assistance, 'time out' and support from other young people who have been through something similar. Delineating factors associated with increased distress and unmet needs assist in identifying at-risk young people allowing improved assessment and tailoring of support to improve the psychosocial outcomes of young people impacted by parental cancer.
Publisher: Springer Science and Business Media LLC
Date: 06-12-2020
DOI: 10.1007/S00520-019-05104-5
Abstract: This study aimed to validate the Bereaved Cancer Needs Instrument (BCNI), an instrument designed to assess the unmet psychosocial needs of adolescents and young adults (AYAs, 12-25 years) who have experienced the death of a parent or sibling to cancer. In total, 335 participants aged 12 to 25 (M = 15.80, SD = 3.32) who had experienced the death of a parent (N = 297) or sibling (N = 38) from cancer took part in this study. Participants completed the BCNI, the Kessler-10 psychological distress scale (K10), and several items assessing the acceptability of the BCNI. Exploratory factor analysis indicated that a seven-factor structure best fit the BCNI, accounting for 56.65% of the variance in unmet psychosocial needs of cancer-bereaved AYAs. The measure had good psychometric properties, high levels of internal consistency for all domains, and correlated strongly with the K10 (r = .59, p < .001). Item response theory analysis demonstrated that the response scale was appropriate, with strong discrimination indices. Analyses also indicated the potential to reduce the BCNI from 58 items to a 37-item short-form, although this will require further validation. The BCNI is the first psychometrically validated instrument to identify the unmet psychosocial needs of bereaved AYAs who have experienced the death of a parent or sibling to cancer. The instrument can be used in research and health care settings to identify the unmet needs of young people bereaved by cancer and provide targeted support to reduce psychological distress.
Publisher: MDPI AG
Date: 22-09-2022
Abstract: Adolescents and young adults (AYAs) diagnosed with cancer experience disrupted engagement in education and employment, which can have profound and long-term impacts on their quality of life. It is therefore vital to offer AYAs access to tailored, evidence-based services to help them to achieve their education and employment goals. However, few such services exist for this population. This paper presents the results from the first step in developing an education and career support service for AYAs diagnosed with cancer using Intervention Mapping. This first step involved developing a logic model that describes the influences of health and demographic factors, in idual determinants, behaviours, and environmental conditions on AYA participation in education or employment. The logic model was developed by integrating data from an integrative literature review cross-sectional survey of AYA clients of a community-based organisation and feedback from a planning group of stakeholders. It is a valuable framework that will be used to direct the focus of the education and career support service for AYAs diagnosed with cancer. More broadly, the logic model has implications for guiding clinical, service, research, and policy improvements for AYA education, employment, and career support, with the aim of improving AYA quality of life.
Publisher: Hindawi Limited
Date: 21-06-2022
DOI: 10.1111/HSC.13873
Publisher: Hindawi Limited
Date: 12-02-2015
DOI: 10.1111/ECC.12291
Abstract: The Australian Youth Cancer Service (YCS) is part of a growing international movement to provide advocacy and better targeted health-care services for adolescents and young adults (AYAs) with cancer. One of the key initiatives of the YCS is to determine and implement priorities within Australian AYA cancer research. The YCS used the value-weighting online survey technique of allocating 100 hypothetical units of funding across pre-determined topics of research in order to determine Australian consumers' and health professionals' AYA cancer research priorities. A total of 101 participants (26 consumers and 75 health professionals) took part in the online survey. Biomedical and Clinical Medicine Research was allocated the greatest proportion of available funding. A number of priority populations were also identified, although these were distributed across pre-treatment and post-treatment stages. The preferences of consumers and health professionals to invest available AYA cancer research funds in Biomedical and Clinical Medicine Research will be an important consideration in guiding the Australian YCS decision-making process in the immediate future. 'Prevention, screening and early detection' was also an important research funding target, along with survivorship populations.
Publisher: Cambridge University Press (CUP)
Date: 23-03-2010
DOI: 10.1017/S1478951509990903
Abstract: The impact of a cancer experience during emerging adulthood (18–25 years of age) is an under-studied phenomenon, with research on young people typically focussing on children or adolescents. Needs-based research on this population is even scarcer. This study sought to ascertain the most commonly-unmet needs of emerging adults with cancer, in various stages of time-since-treatment, and to investigate links to psychological functioning. Using an earlier version of a needs-based questionnaire, presently under development, as well as additional items developed specifically for this age group, the ten most unmet needs were determined for 63 emerging adults in each of the following three groups: those on or within one year since treatment those between one and five years since treatment and those beyond five years since treatment. Psychological functioning was measured by the Depression, Anxiety and Stress Scales (DASS-21). On average, participants rated 17.7 of the 132 needs as unmet. The 10 most unmet needs for each group generated a distinct picture of how needs change as time-since-treatment increases. For those at or within one year since treatment, there were a number of unmet needs directly related to health care provision and the hospital experience. For those whose treatment was more than one year previous, the most unmet needs were more focussed on emotional sychological issues, particularly related to survivorship and life direction. Positive correlations were found between the number of unmet needs and levels of anxiety and stress. The results of the present study provide quantitative needs-based information about emerging adults with cancer, in the context of their treatment situation. This enables health care providers to better support the emerging adult with cancer in ways that are age-appropriate and time-sensitive. The persisting levels of unmet needs and psychological distress beyond five years since treatment underscore the importance of long-term follow-up and support.
Publisher: Mary Ann Liebert Inc
Date: 06-2018
Abstract: Cancer is a significant health concern for adolescents and young adults (AYAs aged 15-24 years). Monitoring population-level changes in incidence, mortality, and survival is complicated by the lack of published data presenting statistics separately for AYAs. This study synthesizes and reviews data on AYA cancers in Australia, including trends in incidence and mortality. National data were extracted for 1980-2012, primarily from the Australian Cancer Database and Australian National Mortality Database. Incidence, mortality, and survival trends are described, and incidence and mortality projections are reported. In 2000-2009, the annual all-cancer incidence was 31.7 cases per 100,000 population, and the mortality rate was 4.1 per 100,000. Incidence, mortality, and survival varied widely, indicating areas of concern. Melanoma was the most common cancer, and bone cancer had the highest mortality and poorest survival rates. All-cancer incidence rates peaked in the late 1990s, but then declined, largely due to melanoma. All-cancer mortality decreased throughout the study period, but showed no improvements for some common sites (i.e., brain, bone, soft tissue). Further reductions in all-cancer incidence and mortality are projected for the next decade, although specific cancers (colorectal cancers and lymphomas) were projected to increase in incidence. Observed Australian cancer trends are largely consistent with trends for other high-income populations. While overall decreases in incidence and mortality are encouraging, consistently high mortality and poor survival for some cancers remain concerning. Planned data initiatives for AYAs with cancer will aid in resolving whether trends continue and projections are realized in the future.
Publisher: Informa UK Limited
Date: 14-10-2019
Publisher: JMIR Publications Inc.
Date: 09-2017
Abstract: dolescent and young adults with cancer are at increased risk of psychosocial difficulties relative to their healthy peers. Current models of inpatient face-to-face psychosocial care might limit the capacity for clinicians to provide timely and personalized assessment and intervention for this group. Telehealth offers a promising alternative toward increasing access to the provision of evidence-based psychosocial assessment and treatment for adolescent and young adults with cancer. his pilot study aimed to assess the feasibility and acceptability for both patients and clinicians of providing a psychosocial assessment via telehealth to adolescents and young adults currently receiving treatment for cancer, relative to face-to-face delivery. e included patients who were aged 15-25 years, currently receiving treatment, could speak English well, and medically stable. Patients were recruited from oncology clinics or wards from 5 hospitals located across Sydney and Canberra, Australia, and allocated them to receive psychosocial assessment (Adolescent and Young Adult Oncology Psychosocial Assessment Measure) with a clinical psychologist or social worker through face-to-face or telehealth modalities using a partially randomized patient preference model. Patients completed a pre- and postassessment questionnaire comprising validated and purposely designed feasibility and acceptability indices, including the impact of technical difficulties, if patients had their own devices number of patients who were content with their group allocation self-reported preference of modality Treatment Credibility and Expectations Questionnaire and Working Alliance Inventory. Clinicians also completed a postassessment questionnaire rating their impressions of the acceptability and feasibility of intervention delivery by each modality. f 29 patients approached, 23 consented to participate (response rate: 79%). Participants were partially randomized to either telehealth (8/23, 35% mean age 16.50 years, range 15-23 years females: 4/8, 50%) or face-to-face (11/23, 62% mean age 17 years, range 15-22 years females: 8/11, 72%) conditions. Four participants withdrew consent because of logistical or medical complications (attrition rate: 17.4%). Most participants (6/8, 75%) in the telehealth group used their computer or iPad (2 were provided with an iPad), with minor technical difficulties occurring in 3 of 8 (37.5%) assessments. Participants in both groups rated high working alliance (Working Alliance Inventory median patient response in the telehealth group, 74, range 59-84 and face-to-face group, 63, range 51-84) and reported positive beliefs regarding the credibility and expectations of their treatment group. Postassessment preferences between face-to-face or telehealth modalities varied. Most patients in the telehealth group (5/8, 63%) reported no preference, whereas 6 of 11 (55%) in the face-to-face group reported a preference for the face-to-face modality. elehealth is acceptable as patient comfort was comparable across modalities, with no significant technological barriers experienced. However, patients varied in their preferred interview modality, highlighting the need to tailor the treatment to patient preference and circumstances. ustralian New Zealand Clinical Trials Registry ACTRN12614001142628 www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=366609 (Archived by WebCite at 21889HpE)
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 07-2015
Publisher: Springer Science and Business Media LLC
Date: 03-08-2012
Publisher: Mary Ann Liebert Inc
Date: 02-2023
Publisher: JMIR Publications Inc.
Date: 18-05-2016
DOI: 10.2196/MENTAL.5481
Abstract: Online technologies may reduce barriers to evidence-based mental health care, yet they also create numerous ethical challenges. Recently, numerous professional organizations and expert groups have produced best-practice guidelines to assist mental health professionals in delivering online interventions in an ethically and clinically sound manner. However, there has been little critical examination of these international best-practice guidelines regarding appropriate electronic mental health (e-mental health) service delivery via technologies such as videoconferencing (including Skype), particularly for specific, vulnerable populations. Further, the extent to which concordance exists between these guidelines remains unclear. Synthesizing this literature to provide clear guidance to both mental health professionals and researchers is critical to ensure continued progress in the field of e-mental health. This study aims to review all currently available ethical and best-practice guidelines relating to videoconferencing-delivered mental health treatments in order to ascertain the recommendations for which international consensus could be found. Additionally, this review examines the extent to which each set of guidance addresses several key special populations, including children and young people, and populations living with illness. This systematic review examined guidelines using a two-armed search strategy, examining (1) professional organizations’ published guidance and (2) MEDLINE, PsycINFO, and EMBASE for the past ten years. In order to determine consensus for best-practice, a recommendation was considered "firm" if 50% or more of the reviewed guidelines endorsed it and "tentative" if recommended by fewer guidelines than these. The professional guidelines were also scored by two raters using the Appraisal of Guidelines for Research and Evaluation II (AGREE-II) criteria. In the study, 19 guidelines were included, yielding 11 specific "firm" and a further 123 "tentative-level" recommendations regarding the appropriateness of e-mental health, competence, legal and regulatory issues, confidentiality, consent, professional boundaries, and crisis management. International consensus yielded firm guidance across almost all areas except professional boundaries and some aspects of determining the appropriateness of e-mental health. Few guidelines specifically addressed special populations. Overall guideline quality varied however, 42% (8/19) of the guidelines scored at least 5 out of 7. This synthesis of guidelines provides a foundation for clinicians and researchers utilizing e-mental health worldwide. The lack of specific guidance relating to special populations is an area warranting further attention in order to strengthen mental health professionals’ and researchers’ capacity to ethically and effectively tailor e-mental health interventions to these groups.
Publisher: Hindawi Limited
Date: 11-2018
DOI: 10.1111/ECC.12968
Abstract: General practitioners (GPs) are often the first point of contact adolescents and young adults (AYAs, aged 10-29) with cancer have with the health system, and they are well-placed to coordinate their complex medical and psychosocial care. This study is the first to report characteristics of patients, GPs and cancers involved in AYA cancer management consultations in Australia, using data from a nationally representative s le of 972,100 patient-GP encounters in 2006-2016. AYA cancers were managed in 212 encounters, equating to approximately 137 per 100,000 AYA consultations. This rate was higher in older AYAs (25-29 years) and those who held a concession card. Approximately 30% of cancers managed were classified as "new", with GPs primarily providing counselling, education, and referrals to specialist care, imaging and pathology. This suggests that GPs are involved in the ongoing care of AYAs with cancer from diagnosis, in conjunction with other healthcare professionals. This is an encouraging indication of the potential for integrated multidisciplinary care extending from active treatment into survivorship however, further work is needed to explore the changing role of GPs across the cancer trajectory.
Publisher: Hindawi Limited
Date: 11-2018
DOI: 10.1111/ECC.12967
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 05-2012
Publisher: SAGE Publications
Date: 09-01-2015
Abstract: Purpose: Feelings of excitement and relief upon finishing cancer treatment are often juxtaposed with a time that can be challenging, distressing, and uncertain for adolescents and young adults (AYAs). The purpose of this study was to examine whether a mindful dispositional trait was associated with better adaptive outcomes for these young people. Methods: AYAs who had finished cancer treatment (N = 76 mean age, 18.5 years, SD, 3.4 years) completed questionnaires measuring mindfulness, psychological distress, and uncertainty around their cancer experience. A median split was performed based on the total scores for the mindfulness measure to establish high and low mindfulness groups. Results: No significant differences were found between these 2 groups on demographic or cancer variables. There were significant differences between the groups on the distress and uncertainty scores such that the higher mindfulness group reported significantly less distress and uncertainty. Conclusions: The current findings suggest the potential for a broader application of mindfulness to more fully assist young people throughout the whole pathway of cancer care.
Publisher: Springer International Publishing
Date: 2018
Publisher: Elsevier BV
Date: 02-2015
DOI: 10.1016/J.SONCN.2014.11.006
Abstract: To review the characteristics of cancer in the adolescence and young adult age group the medical, psychosocial and behavioral late effects survivorship care planning and transition current research priorities and practice implications. Published articles, research studies and position statements. Survivors of cancers that occurred during adolescence and young adulthood (AYA) are confronted with the dual demands of managing their transition to independent adulthood, concurrently with their transition from cancer patient to cancer survivors, with an associated reduction in support from medical services. AYA survivors also face complex medical, psychosocial and behavioral late effects, including fertility and mental health issues. An understanding of the impact of cancer diagnoses among this age group, including survivors' abilities to reintegrate into 'normal' life and potential long term consequences, is necessary to provide the best support. This care and support can be enhanced through multidisciplinary teams who work together to address the medical and psychosocial needs of AYAs diagnosed with cancer.
Publisher: Elsevier BV
Date: 04-2023
Publisher: MDPI AG
Date: 28-05-2021
Abstract: Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016–17 and 2019–20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.
Publisher: JMIR Publications Inc.
Date: 29-07-2018
Abstract: dherence to oral chemotherapy is crucial to maximize treatment outcomes and avoid health complications in cancer patients. Mobile phones are widely available worldwide, and evidence that this technology can be successfully employed to increase medication adherence for the treatment of other chronic diseases (eg, diabetes) is well established. However, the extent to which there is evidence that mobile phone–based interventions improve adherence to oral chemotherapy is unknown. his scoping review aims to explore what is known about mobile phone–delivered interventions designed to enhance adherence to oral chemotherapy, to examine the reported findings on the utility of these interventions in increasing oral chemotherapy adherence, and to identify opportunities for development of future interventions. his study followed Arksey and O’Malley’s scoping review methodological framework. he review search yielded 5 studies reporting on 4 interventions with adults (aged years) diagnosed with erse cancer types. All interventions were considered acceptable, useful, and feasible. The following themes were evident: text messages and mobile apps were the main methods of delivering these interventions, the 2 most commonly employed oral chemotherapy adherence–enhancing strategies were management and reporting of drug-related symptoms and reminders to take medication, the importance of stakeholders’ engagement in intervention design, and the overall positive perceptions of delivery features. Areas for future research identified by this review include the need for further studies to evaluate the impact of mobile phone–delivered interventions on adherence to oral chemotherapy as well as the relevance for future studies to incorporate design frameworks and economic evaluations and to explore the moderator effect of high anxiety, poor baseline adherence, and longer time taking prescribed drug on adherence to oral chemotherapy. espite the increasing body of evidence on the use of mobile phones to deliver medication adherence–enhancing interventions in chronic diseases, literature on the oral chemotherapy context is lacking. This review showed that existing interventions are highly acceptable and useful to cancer patients. The engagement of stakeholders as well as the use of a design framework are important elements in the development of mobile phone–delivered interventions that can be translated into oncology settings.
Publisher: Springer Science and Business Media LLC
Date: 25-10-2013
DOI: 10.1007/S00520-013-2020-3
Abstract: The current study sought to establish the psychometric properties of the revised Sibling Cancer Needs Instrument (SCNI) when completed by young people who have a brother or sister with cancer. The participants were 106 young people aged between 12 and 24 who had a living brother or sister diagnosed with any type or stage of cancer in the last 5 years. They were recruited from multiple settings. The initial step in determining the dimensional structure of the questionnaire was exploratory factor analysis and further assessment followed using Rasch analysis. Construct validity and test-retest reliability (n = 17) were also assessed. The final SCNI has 45 items and seven domains: information practical assistance "time out" and recreation feelings support (friends and other young people) understanding from my family and sibling relationship. There was a reasonable spread of responses across the scale for every item. Rasch analysis results suggested that overall, respondents used the scale consistently. Support for construct validity was provided by the correlations between psychological distress and the SCNI domains. The internal consistency was good to excellent Cronbach's alphas ranged from 0.78 to 0.94. The test-retest reliability of the overall measure is 0.88. The SCNI is the first measure of psychosocial unmet needs which has been developed for young people who have a brother or sister with cancer. The sound psychometric properties allow the instrument to be used with confidence. The measure will provide a substantial clinical benefit in highlighting the unmet needs of this population to assist with the prioritisation of targeted supportive care services and evaluating the impact of interventions targeted at siblings.
Publisher: SAGE Publications
Date: 02-02-2015
Abstract: Purpose: Adolescents and young adults (AYAs) have a need for information about their cancer diagnosis. The purpose of this study was to evaluate a book for AYAs diagnosed with cancer, in particular to assess satisfaction, changes in perceived knowledge and coping, the impact of health literacy (HL) on perceived knowledge, and the impact of the book on distress levels. Methods: Forty-six AYAs (12-24 years of age) completed questionnaires before and after receiving the Now What . . . ? book designed to provide broad and comprehensive information to AYAs with cancer. Results: Overall satisfaction with the book was excellent. Levels of perceived knowledge increased in several domains however, levels of distress, which were elevated, did not improve after participants received the book. Levels of HL related to prebook perceived knowledge, but not to postbook perceived knowledge, suggested that the book is useful for people with all levels of HL. Conclusions: The usefulness and high levels of satisfaction with the book, including the qualitative feedback, demonstrate the potential benefit of the Now What . . . ? books for AYA patients diagnosed with cancer.
Publisher: Springer Science and Business Media LLC
Date: 11-04-2015
Publisher: Wiley
Date: 30-06-2021
DOI: 10.1002/PON.5757
Abstract: 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). AYA patients ( N = 288 15–29 years, M age = 21.5 years, SD ag e = 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. 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. 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 in iduals' specific needs and concerns.
Publisher: Wiley
Date: 20-09-2018
DOI: 10.1002/PON.4869
Publisher: Geological Society of London
Date: 08-03-2021
DOI: 10.1144/JGS2020-175
Publisher: BMJ
Date: 16-08-2019
DOI: 10.1136/BMJSPCARE-2019-001959
Abstract: To assess the availability and efficacy of interventions open to adolescents and young adults (AYAs 15-25 years) bereaved by a parent’s or sibling’s cancer. A systematic review of peer-reviewed literature on interventions available to AYAs bereaved by a parent’s or sibling’s cancer was conducted through searches of six online databases (PsycINFO, Medline, Scopus, Embase, SWAB and Web of Science Core Collection). Database and reference searches yielded 2985 articles, 40 of which were included in the review. Twenty-two interventions were identified that were available for bereaved young people. However, only three were specific to young people bereaved by familial cancer, and none were specific to AYAs. Interventions primarily provided opportunities for participants to have fun, share their experiences and/or memorialise the deceased psychoeducation about bereavement, grief and coping was less common. Only six interventions had been satisfactorily evaluated, and no intervention targeted or analysed data for AYAs separately. Overall, some evidence suggested that interventions (especially those that were theoretically grounded) had positive effects for bereaved young people. However, benefits were inconsistently evidenced in participants’ self-reports and often only applied to subgroups of participants (eg, older youths and those with better psychological well-being at baseline). Considering the very limited number of interventions specific to bereavement by familial cancer and the lack of interventions targeting AYAs specifically, it is unclear whether currently available interventions would benefit this population. The population of AYAs bereaved by familial cancer is clearly under-serviced further development and evaluation of interventions is needed.
Publisher: Wiley
Date: 09-07-2019
DOI: 10.1002/PON.5159
Publisher: Wiley
Date: 11-11-2019
DOI: 10.1002/PON.5274
Abstract: Parents with cancer want information about maintaining family functioning despite cancer. This scoping review assesses what online information resources are available to help parents with cancer maintain family functioning, the quality of the available information, and whether resources provide specific advice for parents of adolescent and young adult (AYA) children. To identify available relevant English-language online information resources, we imitated a parental online information search using three search engines (Google, Yahoo, and Bing). Online resources from the last 10 years for parents with cancer addressing family functioning were included. These resources were rated using the DISCERN instrument-a tool for rating the reliability and quality of health information resources. 684 results were screened and 33 online information resources from the USA, UK, Australia, Canada, and Ireland met the inclusion criteria. Average DISCERN quality was 54/80 (95% CI:50-58), which is typical for online health information. The highest rated resources provided information for parents on supporting their AYA children's needs for information and support with feelings, but few comprehensively covered other specific AYA needs. Details on resource weaknesses as identified by the DISCERN are presented. Several high-quality resources for parents with cancer were identified from multiple countries, allowing health professionals internationally to direct patients with cancer to relevant high quality online information. Highlighted limitations in resource quality and scope will guide future resource development and revision, ensuring more comprehensive high quality information is available to support families affected by parental cancer internationally.
Publisher: Wiley
Date: 10-05-2016
DOI: 10.1111/SCS.12320
Abstract: Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population. (ii) To develop a measure of unmet needs in this population and conduct initial psychometric analysis. This was mixed method interviews in study one informed measure development in study two. Inclusion criteria were as follows: having a parent with a chronic condition and being aged 16-24 years. In study 1, an interpretative phenomenological analysis was conducted on interviews from seven young adults (age range 17-19 years). Study 2 explored factor structure, reliability and validity of the Offspring Chronic Illness Needs Inventory (OCINI). Participants were 73 females and 34 males (mean ages 18.22, SD = 1.16 18.65, SD = 1.25). OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. Interviews communicated that the impact of their parent's condition went unacknowledged and resulted in psychosocial, support and informational needs. An exploratory principal axis analysis of the OCINI yielded five factors. Significant and positive correlations were found between unmet needs and stress, anxiety, and depression, and inversely with quality of life. The scale has applications in clinical settings where these young people, who are at risk of negative psychological outcomes, may be assessed and unmet needs targeted appropriately.
Publisher: Wiley
Date: 17-08-2014
DOI: 10.1002/PON.3653
Abstract: Predictors of psychological distress and unmet needs amongst adolescents and young adults (AYAs) who have a brother or sister diagnosed with cancer were examined. There were 106 AYAs (12-24 years old) who completed questionnaires covering demographics, psychological distress (Kessler 10), unmet needs (Sibling Cancer Needs Instrument) and family relationships (Family Relationship Index Adult Sibling Relationship Questionnaire Sibling Perception Questionnaire (SPQ)). Three models were analysed (demographic variables, cancer-specific variables and family functioning variables) using multiple linear regression to determine the role of the variables in predicting psychological distress and unmet needs. Unmet needs were higher for AYA siblings when treatment was current or a relapse had occurred. Higher scores on the SPQ-Interpersonal subscale indicating a perceived decrease in the quality of relationships with parents and others were associated with higher levels of distress and unmet needs. The age and gender of the AYA sibling, whether it was their brother or sister who was diagnosed with cancer, the age difference between them, the number of parents living with the AYA sibling, parental birth country, time since diagnosis, Family Relationship Index, Adult Sibling Relationship Questionnaire and the SPQ-Communication subscale did not significantly impact outcome variables. These results highlight the variables that can assist in identifying AYA siblings of cancer patients who are at risk and have a greater need for psychosocial assistance. Variables that may be associated with increased distress and unmet needs are reported to assist with future research. The results are also useful in informing the development of targeted psychosocial support for AYA siblings of cancer patients.
Publisher: Mary Ann Liebert Inc
Date: 03-2016
Abstract: Health literacy can influence long-term health outcomes. This study aimed to validate an adapted version of the Functional, Communicative and Critical Health Literacy measure for adolescent and young adult (AYA) cancer patients and survivors (N = 105 age 12-24 years). Exploratory factor analysis was used to validate the measure, and indicated that a slightly modified item structure better fit the results. Furthermore, item response theory analysis highlighted location and discrimination parameter differences among items. Acceptability of the measure was high. This is the first validation of a health literacy measure among AYAs with an illness such as cancer.
Publisher: BMJ
Date: 24-03-2021
DOI: 10.1136/BMJSPCARE-2020-002786
Abstract: Psychological suffering is ubiquitous with cancer and frequently presents as an unmet supportive care need. In clinical practice, distress-related needs are often addressed by nurses and non-psychologist allied healthcare professionals who may have limited training in psychological therapeutic frameworks, particularly more recently developed interventions such as Acceptance and Commitment Therapy (ACT). We developed a single-day training programme for professionals working in supportive and palliative cancer care settings to change the nature of clinical communication about psychological distress and suffering towards an ACT-consistent approach. We report on experiences of training delivery, and evaluation data about training satisfaction and intention to apply the training to clinical practice, from three training iterations in British and Australian, government-funded and charitable sectors. One hundred and sixteen cancer care professionals participated in the training. Evaluation data were collected from 53 participants (at either 2-week or 3-month follow-ups, or both) using self-report survey, including both quantitative and free-text questions. At 2 week follow-up, 73% of trainees rating our course as having relevance to their work, and at 3 month follow-up, 46% agreed that they were better placed to provide improved clinical services. Qualitative feedback supported the inclusion of experiential learning and theoretical explanations underpinning ACT techniques. Undertaking this training did not significantly increase trainees’ stress levels, nor did implementation of this new way of working negatively affect staff well-being. Positive, ACT-consistent, changes in communication behaviours and attitudes were reported, however there was a lack of significant change in psychological flexibility. Acceptability and applicability of this training to supportive and palliative healthcare is positive. The lack of change in psychological flexibility suggests a potential need for more experiential content in the training programme. Logistical challenges in one training group suggests the need for more robust train-the-trainer models moving forward.
Publisher: Wiley
Date: 06-06-2019
DOI: 10.1002/PON.5110
Abstract: Engaging in shared decision-making may be particularly difficult for adolescents and young adults with cancer (AYAs), possibly because of lower levels of health literacy. Family members of AYAs are likely to support decision-making about their healthcare by contributing to health literacy skills ractices however, the nature of this process is unclear. This systematic review synthesized qualitative studies that explored the process of decision-making and characterized how AYA healthcare information is shared, from the perspective of the AYA and their family members. Electronic searches of EMBASE, MEDLINE, PsycINFO, and CINAHL were conducted in May 2018. Peer-reviewed studies discussing the decision-making process in AYAs and/or their families were eligible for inclusion. Findings were analyzed thematically using Framework analysis. Seven thousand two hundred seventy-three studies were screened, and 14 eligible studies were included. The synthesized themes aligned with the Supported Health Literacy Pathway model Our findings suggest that health literacy is a dynamic and transactional process and provide clinicians, researchers, and other stakeholders with a framework to foster AYA engagement in decision-making.
Publisher: Mary Ann Liebert Inc
Date: 04-2018
Abstract: Adolescents and young adults (AYAs) with cancer have unique cancer care needs that differ significantly from younger and older cancer patients. There has been an increasing appreciation for this unique group of patients internationally, with a rise in research and establishment of innovative models of care dedicated to addressing their needs. This narrative review identifies common elements and barriers to care for AYA cancer patients and survivors, and offers recommendations for developing clinical care models for this age-defined population.
Publisher: Wiley
Date: 25-04-2017
DOI: 10.1002/PON.4421
Publisher: Wiley
Date: 05-08-2020
DOI: 10.1002/PON.5475
Publisher: Wiley
Date: 19-05-2023
DOI: 10.1002/PON.6168
Abstract: To evaluate the psychometric properties of the Perceptions of Parental Illness Questionnaire for Cancer (PPIQ‐C) among adolescents and young adults (AYAs). A s le of 372 AYAs (aged 12–24 years) who had a parent diagnosed with cancer completed the PPIQ‐C and the Kessler Psychological Distress Scale (K10). Exploratory factor analyses were conducted to examine the dimensional structure of the PPIQ‐C. Scale reliability was evaluated using Cronbach's alpha (α) and McDonald's omega (ω). Pearson correlation analyses were conducted to assess construct validity by examining correlations between PPIQ‐C subscale scores and K10 total scores. The PPIQ‐C is organised into three sections, each with a separate factor structure for items representing identity , core ( emotional representations , coherence , timeline , consequences , and controllability ), and cause dimensions of the Common‐Sense Model of Self‐Regulation. Exploratory factor analyses determined the structure of each section: identity items comprised two subscales (12 items), core items comprised 10 subscales (38 items), and cause items comprised three subscales (11 items). Scale reliability was acceptable for all subscales, except the cause subscale chance or luck attributions ( α = 0.665). Correlations between PPIQ‐C subscale scores and K10 total scores provided support for construct validity. Preliminary evidence suggests that the PPIQ‐C is a reliable, valid, and useful tool for assessing illness perceptions among AYAs with a parent with cancer. The PPIQ‐C may be a useful addition to both clinical practice and future research, however further evaluation work is needed to confirm its structure and robustness prior to use.
Publisher: Mary Ann Liebert Inc
Date: 06-2018
Abstract: Genetic testing is becoming increasingly available for adolescents who are undergoing cancer treatment or at risk of cancer predisposition syndromes. With this narrative review, we aimed to synthesize the evidence on psychosocial outcomes and adolescents' understanding of genetic testing-thus far, an underresearched topic. Both psychological benefits and harms of predictive testing were reported in adolescents from high-risk families. Harms were mainly related to cancer-specific distress and increased worries. Findings on genetic understanding were sparse. Future studies should focus on psychosocial outcomes and adolescents' understanding undergoing genetic testing and enabling access to genetic counseling pre-testing and post-testing.
Publisher: Informa UK Limited
Date: 11-2013
DOI: 10.1080/07347332.2013.835021
Abstract: This research sought to identify what has been helpful for young people who have a parent diagnosed with cancer. Semistructured telephone interviews were conducted with young people (N = 15, age: M = 15.9 years) who had a parent diagnosed with cancer within the last 5 years. A phenomenological thematic data analysis distinguished three superordinate themes, identifying what helped adolescents cope with their parent's cancer diagnosis. These were parental behavior, specific coping strategies used by the young person, and community support. These results contribute to our knowledge of what can help young people whose parent has been diagnosed with cancer.
Publisher: Hindawi Limited
Date: 11-2018
DOI: 10.1111/ECC.12958
Publisher: Hindawi Limited
Date: 15-03-2018
DOI: 10.1111/ECC.12836
Abstract: The literature concerning the impact of having cancer during adolescence and emerging adulthood has been widely discussed in relation to the unique nature of psychosocial challenges. The current study presents these findings within the context of developmental literature to further our understanding on how their developmental transitioning can be affected by having cancer. Specifically, two developmental milestones considered to be the pre-requisites for acquiring an adult status were focused on: forming identity and establishing independence. Several traditions of developmental literature were incorporated, including the psychosocial, sociological and psychoanalytical perspectives. The study discusses challenges to these developmental processes and suggests measures to foster young people's normative development.
Publisher: Springer Science and Business Media LLC
Date: 28-08-2020
DOI: 10.1007/S10566-020-09571-4
Abstract: Adolescents diagnosed with cancer experience unique psychosocial concerns that persist beyond treatment completion into longer-term survivorship. C -based, group Acceptance and Commitment Therapy (ACT) programs are a potential model for providing evidence-informed psychological and peer support to adolescent cancer survivors. This paper describes the development and exploration of the feasibility and acceptability of such a program, Places You’ll Go. This manualised program incorporates five 90-min group ACT sessions within a 3-day c , teaching ACT strategies in the context of psychosocial impacts of cancer. Eight facilitators and twenty-eight Australian adolescent cancer survivors (68% female age range 12–17 years, M = 15.4 years) participated in the program and evaluation. Feasibility was assessed using facilitator-reported session duration, attendance, quality and content fidelity facilitators also completed interviews after program completion. Young people completed surveys on program acceptability at the end of each session and at program completion. All planned sessions were delivered, with 97% attendance and high fidelity in manualised program delivery. All young people were mostly or very satisfied and would recommend the program to another cancer survivor. Opportunities for peer connection and skill development contributed to perceived program acceptability. The Places You’ll Go program was acceptable and feasible to deliver. It is a promising community-based model for promoting peer support and well-being in adolescent cancer survivors, indicating the potential of ACT-based approaches for this population. Further work is underway to evaluate whether the program improves psychosocial wellbeing among participants, and if this is linked to the therapeutic mechanisms underpinning ACT.
Publisher: Wiley
Date: 28-11-2018
DOI: 10.1002/PON.4938
Abstract: Online psychological therapies provide a way to connect adolescent and young adult (AYA) cancer survivors to evidence-based support. We aimed to establish the feasibility, acceptability, and safety of Recapture life, a six-session group-based online cognitive-behavioural intervention, led by a facilitator, for AYAs in the early post-treatment period. A randomised-controlled trial compared Recapture Life to an online peer-support group control and a waitlist control. Participants could nominate a support person. Acceptability was assessed using study opt-in and retention rates, participant-reported benefits/burdens of participation, and group facilitator burden. We also assessed the feasibility (eg, frequency/impact of technological difficulties) and psychological safety (ie, occurrence of clinically concerning distress) of the program. Sixty-one participants took part (45 AYAs, 51.1% female 19 support people). The opt-in rate was 30%, the enrolment rate was 87%, and 75% of participants took part in ≥5/6 sessions. AYAs reported high benefit and low burden of participation. Overall, 95 online group sessions were conducted few required rescheduling by group facilitators (3%), but many took place outside of office hours (~90 hours). It took 40 days on average to create online groups, but established weekly sessions commenced quickly (M = 4.0 minutes). Technological difficulties were common but had a low impact on intervention delivery. Although 54% of AYAs returned a clinically concerning distress screen at some point, none reflected acute mental health risks. The data largely indicate that Recapture Life is an acceptable, feasible, and safe model of evidence-based psychological support for AYAs during early survivorship, which nevertheless experienced common challenges in online/AYA intervention delivery.
Publisher: Springer Science and Business Media LLC
Date: 05-03-2018
Publisher: Springer Science and Business Media LLC
Date: 29-04-2021
DOI: 10.1186/S12904-021-00752-Z
Abstract: Adolescents and young adults (AYAs) bereaved by the death of a parent or sibling from cancer report unique psychosocial needs and can have difficulty adjusting to their loss. Unaddressed, this can result in poor long-term bereavement outcomes. This paper describes the development and evaluation of Good Grief – a 3-day c -based program focused on meeting coping, social support, and respite needs of AYAs bereaved by familial cancer. One hundred and nine Australian AYAs (68% female age: 12–25 years, M = 16.63) participated in the evaluation. Grief intensity (Texas Revised Inventory of Grief), meaning-making (Grief and Meaning Reconstruction Inventory), trauma coping (Perceived Ability to Cope with Trauma Scale) and unmet needs (Bereaved Cancer Needs Instrument) measures were administered pre-program and 3-months post-program. Acceptability was measured after each session and at the program’s conclusion. Appropriateness was measured at 3-month follow-up. Thirteen participants were interviewed three months post-program on their perceptions of the program. Participants reported high program satisfaction, engagement with psychosocial sessions, and enjoyment of recreational activities. Significant improvements were observed in trauma coping abilities and reductions in unmet needs for managing emotions, social support, respite, future planning, and accessing information and support domains. No change was evident in grief intensity or meaning-making as measured quantitatively. Interviews supported these quantitative findings but also identified evidence of personal growth, a component of meaning-making. Good Grief is a highly acceptable and beneficial intervention that addresses the unique needs of AYAs bereaved by familial cancer.
Publisher: Hindawi Limited
Date: 18-01-2016
DOI: 10.1111/ECC.12432
Abstract: This review aimed to (1) summarise the psychosocial needs of children/adolescents (0-18 years) with a parent with cancer across the illness trajectory (diagnosis to bereavement) and (2) evaluate existing interventions for this population. Medline, CINAHL, PsychInfo, EMBASE and Social Work Abstracts were systematically searched for articles published from 1985 to 2015. Of 98 full text articles retrieved, 12 reported on children's psychosocial needs, and 12 intervention studies were identified. Each article was appraised in accordance with the Mixed Method Appraisal Tool. Three factors emerged as critical to consider in future intervention development: (1) Children need age-appropriate information about their parent's cancer (2) Children require support communicating with parents, family members and health professionals and (3) Children need an environment where they feel comfortable sharing positive/negative emotions and can have their experiences normalised among peers. All intervention studies reported at least one positive outcome, however, only five reported significant improvements in child/family functioning based on validated quantitative measure/s. Variability in study design and quality, combined with considerable heterogeneity in intervention characteristics and outcome variables limited the conclusions, which could be drawn. Therefore, further carefully designed and scientifically evaluated interventions for children facing a parent's cancer diagnosis are clearly warranted.
Publisher: Springer Science and Business Media LLC
Date: 25-04-2020
Publisher: Springer Science and Business Media LLC
Date: 21-08-2021
Publisher: Wiley
Date: 02-07-2022
DOI: 10.1002/PON.5987
Abstract: Most adolescents and young adults (AYA) can expect to survive a cancer diagnosis and treatment, but all will be left with the potential of long‐term negative effects that can impact their ability to reach their full potential in life. Understanding aspects of psychological, functional, and social health and well‐being outcomes, is pivotal for optimising long‐term well‐being. We completed a systematic review of longitudinal studies reporting outcomes after anti‐cancer treatment for Adolescents and Young Adults diagnosed between the age of 12–29 years according to established systematic review processes. The protocol was registered with PROSPERO (ID: CRD 42020203116). Thirteen reports from 10 studies met eligibility criteria representing 17,645 in iduals (50.3% female, mean age at diagnosis 22 years, and 26 years at last, follow up). Eleven reports were from eight quantitative studies that relied on self‐report surveys and two were qualitative studies. Psychological outcomes were reported to improve over time, as were functional health outcomes, although reported health behaviours were inconsistent between studies. Neurocognitive deficits were reported to affect the ability to return to work and impacts on fertility and sexuality were sustained over time. While some outcomes for AYA are reported to improve over time, particularly for physical functioning, and anxiety and depression, the long‐term impact of cancer on many important domains remains largely unknown. Specifically, the evidence to understand what changes occur over time, and when, remains underdeveloped.
Development of a Smartphone Program to Support Adherence to Oral Chemotherapy in People with Cancer
Publisher: Informa UK Limited
Date: 12-2019
DOI: 10.2147/PPA.S225175
Publisher: SAGE Publications
Date: 25-08-2010
Abstract: The psychosocial needs of young people (aged 12-24) who have a sibling with cancer are still comparatively underresearched and largely underserviced. Steps taken in the development of a needs-based measure, the Sibling Cancer Needs Instrument (SCNI), are presented, involving a qualitative exploration of needs (focus group with 4 young people, telephone interviews with 7 young people, and a staff survey) and a quantitative piloting of the resulting first version of the SCNI on 71 young people. Results are explored in relation to the 10 identified domains of need (information, peer support [friends], peer support [similar experience], sibling relationship/support, expressing/coping with feelings, access to support services, respite/recreation, acknowledgement/attention for self, instrumental support, and involvement in the cancer experience). The survey data showed that 75% of young people endorsed 10 or more needs, whereas 50% endorsed more than half of all 80 needs, and on average, participants reported 10 unmet needs. Correlations between needs and psychological distress scores are also explored. Initial reliability, and face and content validity for the SCNI encourage further development of the instrument to assist in better monitoring and to meet the various needs of this underserviced population.
Publisher: Hindawi Limited
Date: 20-10-2021
DOI: 10.1111/ECC.13348
Publisher: Elsevier BV
Date: 2018
DOI: 10.1016/J.IJNURSTU.2017.08.017
Abstract: To i) identify and synthesise evidence published since 2007 regarding the impact of parental cancer on adolescent and young adult offspring, ii) identify methodological and evidence gaps addressed during this period and iii) highlight those requiring further attention. A systematic review and thematic synthesis of peer reviewed literature regarding the impact of parental cancer upon AYA offspring. Online searches of CINAHL, Embase, Medline, PsychInfo and Scopus databases were conducted. Reference lists of included articles were screened and additional searches by prominent authors were performed. Study selection, data extraction and quality analysis was undertaken by three independent researchers. Extracted study data was iteratively reviewed and discussed to achieve consensus regarding thematic synthesis of included studies. Database and hand-searching yielded 1730 articles, 54 of which were included in the final synthesis. Included studies are discussed with respect to the following themes: i) study design and quality ii) measurement and s ling iii) positive and negative aspects of parental cancer iv) needs v) communication and information vi) coping strategies vii) interventions and viii) family functioning and other predictors. Twenty-nine studies reported negative impacts related to parental cancer, while eight identified positive outcomes related to post-traumatic growth. Five returned null or mixed findings. Unmet needs were frequently explored and a new validated measure developed. Communication and information were particularly important for offspring, though these needs were often unmet and parents wanted guidance regarding discussions with their children. Offspring may adopt a variety of coping strategies, some of which appear maladaptive, and may cycle between different approaches. Few evaluations of interventions were identified, and further work in this area is needed. Further evidence has emerged that poorer family functioning and other family and illness-related factors predict worse psychosocial outcomes for offspring, however evidence for other predictors such as age and gender remain mixed. Additional evidence for the negative psychosocial impact of parental cancer on adolescent and young adult offspring, their needs, and factors predicting psychosocial outcomes has emerged in the last decade. However, substantial gaps and methodological issues remain and evidence for the development, efficacy or implementation of interventions for this population is very limited. There is also a clear need for greater focus on bereaved and young adult offspring and those from non-western cultural groups, who remain under-represented in research conducted to date.
Publisher: Springer Science and Business Media LLC
Date: 24-06-2010
DOI: 10.1007/S00520-010-0933-7
Abstract: This study aimed to identify the psychosocial needs of young people (12-24 years) who have a parent with cancer and to assess whether these needs are being met. This paper also presented the initial steps in the development of a need-based measure-the Offspring Cancer Needs Instrument (OCNI). Study 1 used qualitative methods to identify the needs of the target population, including a focus group (n = 6), telephone interviews (n = 8) and staff survey (n = 26). In study 2, a quantitative survey design was employed where 116 young people completed the 67-item OCNI and either the total difficulties score of the Strengths and Difficulties Questionnaire (SDQ-TD 12-17-year-old) or Depression, Anxiety, Stress Scale-21 (DASS-21) (18-24-year-old). Tests of reliability (Cronbach's alpha) were used to assess the properties of each domain, where a level of 0.70 was deemed satisfactory as per scale guidelines. Construct validity was assessed by testing the proposed relationship between unmet needs and functioning where a coefficient of 0.03 was deemed satisfactory. The qualitative data yielded eight need domains (information, peer support, feelings, carer support, family, school/work environment, access to support and respite and recreation), which were subsequently used to inform the item content of the OCNI. The survey data revealed that 90% of young people endorsed 10 or more needs, and nearly a quarter indicated >50 needs. It was also found that these needs often go unmet: 87% of the participants had at least one unmet need, 43% reported >10 and just under a quarter had >20 unmet needs. The two highest reported unmet needs related to understanding from friends and assistance with concentrating and staying on task. The OCNI exhibited face and content validity and acceptable reliability for most of the domains. Cronbach's alpha ranged from 0.64 (access to support) to 0.92 (information). Preliminary construct validity was assessed through the hypothesised positive relationship between unmet needs and the SDQ-TD for 12-17-year-old participants (r = 0.33, p<0.001) and the DASS-21 for 18-24-year-old participants (depression, r = 0.77, p < 0.001 anxiety, r = 0.66, p < 0.001 stress: r = 0.56, p < 0.05). Young people (aged 12-24 years) who have a parent with cancer report a complex array of needs, many of which go unmet. The preliminary findings reported may be used to inform service providers in the development and evaluation of need-based programs to redress these unmet needs and thus ameliorate the effects of parental cancer. Services addressing information and school-based interventions are particularly pertinent given these current results.
Publisher: JMIR Publications Inc.
Date: 29-08-2018
DOI: 10.2196/RESPROT.8886
Publisher: Informa UK Limited
Date: 08-2015
DOI: 10.1111/AP.12112
Publisher: Cambridge University Press (CUP)
Date: 10-05-2013
DOI: 10.1017/S1478951512001083
Abstract: Age-based screening tools and assessment measures are crucial to the provision of best practice care for adolescent and young adult (AYA) cancer patients. Unfortunately, there are limited psychosocial tools developed for this age group and pediatric or adult measures are often distributed with the assumption that they are “close enough.” We describe a collaborative Australian project that strives to improve what currently exists for the psychosocial assessment of and planning for the 15–25-year-old age group. Using the National Comprehensive Cancer Network's Distress Thermometer and the HEADSS Assessment as a foundation, the tools were developed in consultation with Australia's leading AYA clinicians, AYAs currently undergoing medical treatment, and a group of AYA survivors through a process of discussion groups and clinical interviews. The result is the first available AYA-specific screening tool, care plan pro forma, and psychosocial assessment measure developed for use within the oncology sector. These new tools will assist clinicians working with this population group to support psychosocial coping during active treatment and promote healthy post-treatment survivorship. Over time, further validation procedures will add to the veracity of the measures. Until then, these measures represent the best available in Australia. They highlight a clinically recognized minimum standard of care that all young cancer patients, regardless of treatment location, have the right to receive.
Publisher: Springer Science and Business Media LLC
Date: 19-02-2013
DOI: 10.1007/S00520-013-1749-Z
Abstract: The current study sought to establish the psychometric properties of the revised Offspring Cancer Needs Instrument (OCNI) when completed by a large s le of young people impacted by parental cancer recruited from multiple settings. The psychometric properties were evaluated with 256 young people aged between 12 and 24 who had a parent or primary caregiver diagnosed with any type or stage of cancer within the last 5 years and who was still living. Exploratory factor analysis was conducted as an initial step in determining the dimensional structure of the questionnaire, and further assessment followed using Rasch analysis. Construct validity and test-retest reliability (n = 35) were also assessed. The final OCNI has 47 items and 7 domains: information, family issues, practical assistance, time out, feelings, support (friends) and support (other young people). There was a reasonable spread of responses across the scale for every item, and Rasch analysis results suggested that overall, respondents used the scale consistently. The retest correlation for the overall measure was 0.73. Support for construct validity was provided by the correlations between psychological distress and the OCNI domains. The internal consistency was excellent the lowest domain Cronbach alpha is 0.89. The OCNI is the first measure of psychosocial unmet needs which has been developed specifically for young people who have a parent with cancer. It has sound psychometric properties and will provide substantial clinical benefit in identifying the unmet needs of this population to assist with the provision of targeted supportive care services.
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Pandora Patterson.