ORCID Profile
0000-0003-4484-4929
Current Organisation
CanTeen Australia
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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: Wiley
Date: 09-07-2019
DOI: 10.1002/PON.5159
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: 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: 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: 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: 25-04-2017
DOI: 10.1002/PON.4421
Publisher: Springer Science and Business Media LLC
Date: 06-07-2019
DOI: 10.1007/S00520-019-04973-0
Abstract: This study uses the newly developed Bereaved Cancer Needs Inventory to identify the unmet psychosocial needs of adolescents and young adults who have experienced the death of a parent or sibling to cancer, and to explore the relationship between unmet needs and psychological distress. In total, 278 bereaved offspring and 38 bereaved siblings (12-25 years) completed the 58-item Bereaved Cancer Needs Inventory (BCNI) and the Kessler psychological distress scale (K10). Bereaved offspring reported 27 unmet needs on average (SD = 16.87, range: 0-58) 94% indicated at least one unmet need, with 80% indicating 10 or more needs. Bereaved siblings reported 23 unmet needs on average (SD = 17.30, range: 0-57) 97% indicated at least one unmet need, with 68% indicating 10 or more needs. For both bereaved offspring and siblings, the needs for "support from other young people" and "time out and recreation" were most frequently reported as unmet. Approximately half of all participants reported high to very high levels of psychological distress. There was a significant positive relationship between the number of unmet needs and the psychological distress score on the K10 for both groups. Bereaved offspring and bereaved siblings report unmet psychosocial needs across many domains, which are associated with their levels of psychological distress. Findings suggest the BCNI may be used by healthcare professionals to identify unmet needs and direct clients to the appropriate services, resources, or support with the intent to reduce their risk of mental illness and psychological distress.
Publisher: Wiley
Date: 05-08-2020
DOI: 10.1002/PON.5475
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: 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: Wiley
Date: 16-12-2020
DOI: 10.1002/PON.5294
Abstract: Breast cancer (BC) accounts for 24% of female cancers, with approximately one quarter of women likely to have offspring aged less than 25 years. Recent publications demonstrate negative psychosocial well-being in these offspring. We prospectively assessed for psychological distress and unmet needs in offspring of BC patients. Eligible offspring aged 14 to 24 years were consented and completed the Kessler-10 Questionnaire and Offspring Cancer Needs Instrument. Demographic and BC details were obtained. Over a 7-month period, 120 offspring from 74 BC patients were included. Fifty-nine mothers had nonmetastatic BC (nMBC), and 27 had metastatic BC (MBC) with median time from diagnosis of 27.6 and 36.1 months, respectively. The prevalence of high/very high distress was 31%, with significantly higher scores reported by female offspring (P = .017). Unmet needs were reported by more than 50% of offspring with the majority of needs relating to information about their mother's cancer. Greater unmet needs were seen in female offspring and offspring with none or one sibling for several domains (practical assistance, time-out, dealing with feelings, and support from friends P < .05). Greater unmet needs were seen in regard to feelings for MBC patients' offspring compared with nMBC but were similar for other unmet needs. Our study confirms high levels of psychological distress in offspring of BC patients, with female offspring reporting significantly higher emotional distress and unmet needs. More than 50% of respondents reported unmet needs in areas that can potentially be supported, including greater information provision, improving practical issues, and enabling sufficient recreational time.
Publisher: Mary Ann Liebert Inc
Date: 22-05-2023
Publisher: Mary Ann Liebert Inc
Date: 27-06-2023
Publisher: Springer Science and Business Media LLC
Date: 09-09-2015
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: 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: 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: Springer Science and Business Media LLC
Date: 21-08-2021
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: Hindawi Limited
Date: 21-06-2022
DOI: 10.1111/HSC.13873
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.
Publisher: Springer Science and Business Media LLC
Date: 09-07-2021
DOI: 10.1007/S00520-021-06379-3
Abstract: Given the large number of adolescents and young adults (AYAs) impacted by parental cancer and the potential for negative psychosocial outcomes in this vulnerable population, this study examined the mediating role of offspring unmet needs with regard to parental cancer and the relation between AYAs psychosocial adjustment and perceived illness unpredictability. A total of 113 AYAs (aged 11–24 years) living with a parent diagnosed with cancer completed a questionnaire assessing illness unpredictability, offspring unmet needs, and psychosocial adjustment (i.e., health-related quality of life and internalizing problems). Higher offspring unmet needs were associated with lower health-related quality of life ( r = –0.24**) and higher internalizing problems ( r = 0.21*). Offspring unmet needs mediated the relation between illness unpredictability and health-related quality of life (standardized indirect effect = –0.100* [–0.183, –0.018]) but not internalizing problems (standardized indirect effect = 0.067 [–0.015, 0.148]). In particular, higher illness unpredictability was related to higher unmet needs ( β = 0.351**) which, in turn, predicted lower health-related quality of life ( β = –0.286**). These findings identify offspring unmet needs and illness unpredictability as implicated in AYAs positive psychosocial adjustment to parental cancer. Given that AYAs are at greater risk of elevated psychosocial difficulties, interventions should target offspring unmet needs and perception of illness unpredictability to mitigate the adverse effects of parental cancer.
Publisher: Informa UK Limited
Date: 14-10-2019
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 07-2015
Publisher: Mary Ann Liebert Inc
Date: 02-2023
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: 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: 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: Cambridge University Press (CUP)
Date: 23-12-2020
DOI: 10.1017/S0022215119002536
Abstract: Deep learning using convolutional neural networks represents a form of artificial intelligence where computers recognise patterns and make predictions based upon provided datasets. This study aimed to determine if a convolutional neural network could be trained to differentiate the location of the anterior ethmoidal artery as either adhered to the skull base or within a bone ‘mesentery’ on sinus computed tomography scans. Coronal sinus computed tomography scans were reviewed by two otolaryngology residents for anterior ethmoidal artery location and used as data for the Google Inception-V3 convolutional neural network base. The classification layer of Inception-V3 was retrained in Python (programming language software) using a transfer learning method to interpret the computed tomography images. A total of 675 images from 388 patients were used to train the convolutional neural network. A further 197 unique images were used to test the algorithm this yielded a total accuracy of 82.7 per cent (95 per cent confidence interval = 77.7–87.8), kappa statistic of 0.62 and area under the curve of 0.86. Convolutional neural networks demonstrate promise in identifying clinically important structures in functional endoscopic sinus surgery, such as anterior ethmoidal artery location on pre-operative sinus computed tomography.
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: 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: 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.
Publisher: Wiley
Date: 20-09-2018
DOI: 10.1002/PON.4869
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.
No related grants have been discovered for Fiona McDonald.