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1.
J Adolesc Young Adult Oncol ; 12(6): 859-867, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37219896

ABSTRACT

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15-29 years and received cancer treatment from 2014 to 2019. Australians (n = 118) were recruited nationally by health care professionals. U.S. participants (n = 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment.


Subject(s)
Fertility Preservation , Neoplasms , Adolescent , Humans , Young Adult , Australia , Fertility Preservation/psychology , Neoplasms/therapy , Neoplasms/psychology , Patient Care , United States , Adult
2.
J Adolesc Young Adult Oncol ; 12(1): 101-109, 2023 02.
Article in English | MEDLINE | ID: mdl-35333618

ABSTRACT

Purpose: Fertility is a major concern for adolescents and young adults (AYAs, 15-30 years) diagnosed with cancer, yet they often report a lack of information and understanding about fertility impacts and preservation options. This study aimed to evaluate the acceptability and preliminary efficacy of Maybe Later Baby (MLB), an oncofertility information resource for AYAs diagnosed with cancer. Methods: In a randomized controlled trial, 13 participants received MLB alone and 10 received an augmented intervention involving an additional consultation with a health care professional (HCP). Pre- and postintervention surveys and interviews explored participants' well-being, fertility knowledge, health literacy, and experiences using the resource. Results: Participants indicated that the resource was accessible and understandable and provided valuable information without increasing distress. When averaged across conditions, functional health literacy (p = 0.006) and oncofertility knowledge (p = 0.002) increased, although there were no significant changes in fertility-related emotions (p > 0.05), and quality of life decreased (p = 0.014). While qualitative accounts suggested that HCP consultations were useful and validated participants' experiences and concerns, participants receiving the augmented intervention became more nervous/fearful about fertility treatment (p = 0.005). There were no other differences in outcomes between conditions. Conclusions: Young people diagnosed with cancer want and value information about oncofertility and resources such as MLB are acceptable and useful means of providing this information. This could be supplemented by clinical discussion to ensure that tailored situation-specific information is provided and understood and patient distress is appropriately managed. Clinical Trial Registration number: 12615000624583.


Subject(s)
Fertility Preservation , Neoplasms , Humans , Young Adult , Adolescent , Quality of Life/psychology , Pilot Projects , Neoplasms/psychology , Fertility
3.
Health Expect ; 25(6): 3215-3224, 2022 12.
Article in English | MEDLINE | ID: mdl-36307993

ABSTRACT

BACKGROUND: Consumer engagement in health care is recognized as a critical strategy to minimize healthcare-associated harms, however, little research has focussed on strategies to engage young people in healthcare safety. This study explores the suitability of commonly used engagement strategies, such as brochures, interactive bedside charts or apps, for young people (14-25 years) to improve their healthcare safety, with a focus on cancer care. METHODS: Four qualitative online workshops were conducted (N = 19). Two workshops included young people who had experienced cancer (n = 6) and two workshops included staff who support young people who had experienced a diagnosis of cancer (n = 12). Evidence from a systematic review was used to develop case studies of existing strategies as a topic guide for the online workshops. Data were analysed using a framework method and template analysis approach. RESULTS: Thematic analysis against the analytic framework led to the development of four principles for engagement with young people: empowerment, transparency, participatory culture and flexibility. The transition from being 'looked after' to young people being responsible for their own care was an integrative theme which intersected all elements of the framework. CONCLUSION: For service providers to engage with young people about safety issues in cancer services, the strategies employed need to be tailored to consider the transitional nature of being an adolescent or young adult. A systemic approach that incorporates flexible, tailored engagement strategies, education and empowerment of young people and healthcare providers is required to engage effectively with young people about safety in healthcare. These findings may have implications beyond cancer care. PATIENT OR PUBLIC CONTRIBUTION: Workshop content was developed with and by the CanEngage team, including the Consumer Advisory Group, who reviewed content and inform wider project priorities.


Subject(s)
Delivery of Health Care , Health Services , Young Adult , Adolescent , Humans , Research Design , Health Facilities
4.
Psychooncology ; 31(9): 1448-1458, 2022 09.
Article in English | MEDLINE | ID: mdl-35734846

ABSTRACT

OBJECTIVE: 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. METHODS: 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). RESULTS: Thirteen reports from 10 studies met eligibility criteria representing 17,645 individuals (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. CONCLUSIONS: 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.


Subject(s)
Cancer Survivors , Neoplasms , Adolescent , Adult , Anxiety/psychology , Cancer Survivors/psychology , Child , Female , Humans , Longitudinal Studies , Male , Neoplasms/psychology , Neoplasms/therapy , Quality of Life/psychology , Surveys and Questionnaires , Young Adult
5.
Health Soc Care Community ; 30(6): e4673-e4683, 2022 11.
Article in English | MEDLINE | ID: mdl-35727048

ABSTRACT

PEER is a four-day residential program for adolescents impacted by their own or a relative's cancer, with both psychosocial (acceptance and commitment therapy, self-compassion) and recreational components. This study aimed to determine whether previously observed improvements in quality of life amongst highly distressed participants were mediated by improvements in processes targeted by psychotherapeutic elements of the program (psychological flexibility, mindfulness, self-compassion, peer support, distress). Adolescents attending PEER completed surveys assessing the quality of life and proposed mediator variables at pre-program, post-program and two-month follow-up. Adolescents experiencing high/very high levels of baseline distress (n = 52; 5 patients/survivors, 31 siblings/offspring, 13 bereaved siblings/offspring) were previously identified as experiencing clinically significant improvements in psychosocial well-being; here, mediation analyses explored whether these improvements were associated with improvements in process variables. Findings evidenced improvements in quality of life amongst distressed PEER participants, mediated by increases in psychological flexibility and self-compassion, and reductions in distress. Peer support and mindfulness were not significant mediators. Together, this suggests that the psychosocial benefits of PEER observed for highly distressed adolescents are linked to the specific therapeutic approaches used in the program, rather than being non-specific effects of peer connection or recreation. Findings from this evaluation provide further evidence for the efficacy and mechanisms of the effect of PEER for supporting distressed adolescents impacted by cancer. The study also demonstrates the viability and utility of the therapeutic approaches (acceptance and commitment therapy, self-compassion) used, showing that they have psychosocial benefits for this population.


Subject(s)
Acceptance and Commitment Therapy , Mindfulness , Neoplasms , Humans , Adolescent , Quality of Life/psychology , Australia , Neoplasms/therapy , Neoplasms/psychology , Empathy
6.
Front Psychol ; 13: 872830, 2022.
Article in English | MEDLINE | ID: mdl-35602702

ABSTRACT

Objective: Routine psychosocial screening and assessment of people diagnosed with cancer are crucial to the timely detection of distress and provision of tailored supportive care; however, appropriate screening tools have been lacking for adolescents and young adults (AYAs), who have unique needs and experiences. One exception is the recently validated AYA Psycho-Oncology Screening Tool (AYA-POST) for use with young people aged 15-29 years, which comprises a distress thermometer and age-specific needs assessment. This study investigates the clinical utility of this measure, as well as the subsequent service responsiveness within the Australian Youth Cancer Services. Method: In total, 118 AYAs and 29 healthcare professionals: (HCPs) completed surveys about the clinical utility of the AYA-POST; a subset of 30 AYAs completed a 3-month follow-up survey assessing service responsiveness. Descriptive statistics (frequencies/means) were computed for all items, with chi-square analyses used to explore whether perceived clinical utility varied with AYA age, AYA sex, HCP discipline or HCP length of time using the AYA-POST. Results: Participants' responses demonstrate high levels of satisfaction with the tool, evidencing its appropriateness, practicability and acceptability. Moreover, the AYA-POST was reported to facilitate communication about psychosocial needs and prompt referrals, indicating good service responsiveness. Ratings of clinical utility did not differ significantly between AYA and HCP groups. Conclusion: This study demonstrates that the AYA-POST is an appropriate tool in the psychosocial screening of AYAs with cancer, facilitating the identification of distress and unique concerns in this population and valuable in triaging and tailoring care for young cancer patients.

7.
Patient Educ Couns ; 105(7): 2512-2523, 2022 07.
Article in English | MEDLINE | ID: mdl-34998663

ABSTRACT

OBJECTIVE: There is growing recognition that health care professionals (HCPs) and policy makers are insufficiently equipped to provide culturally competent care to lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) cancer patients and their families. We examined HCP attitudes, knowledge, and practices regarding LGBTQI cancer care using a mixed-methods research design. METHOD: Surveys were completed by 357 oncology HCPs in nursing (40%), medical (24%), allied health (19%), and clinical leadership roles (11%); 48 of the surveyed HCPs were interviewed. RESULTS: Most HCPs reported being comfortable treating LGBTQI patients, but reported low levels of confidence and knowledge and systemic barriers to LGBTQI cancer care. Most wanted more education and training, particularly on trans and gender-diverse people (TGD) and those born with intersex variations. CONCLUSION: Education of HCPs and health system changes are required to overcome barriers to the provision of culturally competent cancer care for LGBTQI patients. PRACTICE IMPLICATIONS: These findings reinforce the need for inclusion of LGBTQI content in HCP education and professional training curricula, and institutional support for LGBTQI-inclusive practice behaviours. This includes administrative and visual cues to signal safety of LGBTQI patients within cancer care, facilitating inclusive environments, and the provision of tailored patient-centred care.


Subject(s)
Sexual and Gender Minorities , Transgender Persons , Attitude , Caregivers , Female , Health Knowledge, Attitudes, Practice , Health Personnel , Humans
8.
Support Care Cancer ; 30(1): 145-155, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34241699

ABSTRACT

PURPOSE: 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. METHODS: 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). RESULTS: 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 (ß = 0.351**) which, in turn, predicted lower health-related quality of life (ß = -0.286**). CONCLUSION: 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.


Subject(s)
Neoplasms , Quality of Life , Adolescent , Health Services Needs and Demand , Humans , Neoplasms/therapy , Parents , Surveys and Questionnaires , Young Adult
9.
Children (Basel) ; 8(12)2021 Dec 02.
Article in English | MEDLINE | ID: mdl-34943314

ABSTRACT

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

10.
Psychooncology ; 30(11): 1849-1858, 2021 11.
Article in English | MEDLINE | ID: mdl-34160847

ABSTRACT

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


Subject(s)
Neoplasms , Psycho-Oncology , Adolescent , Adult , Anxiety/diagnosis , Anxiety/epidemiology , Child, Preschool , Humans , Mass Screening , Neoplasms/psychology , Stress, Psychological/psychology , Surveys and Questionnaires , Young Adult
11.
BMC Palliat Care ; 20(1): 64, 2021 Apr 29.
Article in English | MEDLINE | ID: mdl-33926449

ABSTRACT

BACKGROUND: 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 camp-based program focused on meeting coping, social support, and respite needs of AYAs bereaved by familial cancer. METHODS: 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. RESULTS: 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. CONCLUSIONS: Good Grief is a highly acceptable and beneficial intervention that addresses the unique needs of AYAs bereaved by familial cancer.


Subject(s)
Bereavement , Neoplasms , Adolescent , Adult , Australia , Child , Female , Grief , Humans , Male , Parents , Young Adult
12.
Cancer Nurs ; 44(4): E244-E251, 2021.
Article in English | MEDLINE | ID: mdl-32209862

ABSTRACT

BACKGROUND: Adolescents and young adults (AYAs) given a diagnosis of cancer who experience infertility concerns often report having poorer quality of life (QoL). However, the role of infertility-related stressors and illness acceptance on QoL is not clear. OBJECTIVE: The aim of this study was to describe the impact of psychosocial factors surrounding cancer treatment and infertility on QoL. We hypothesized that need for parenthood and infertility-related social concerns would be directly related to QoL and indirectly related to QoL through acceptance of illness. METHODS: Cancer patients/survivors (n = 178; 75.3% female) aged 15 to 29 years completed measures of QoL, acceptance of illness, infertility-related social concerns, and need for parenthood. Path analysis was used to test the hypothesized and subsequent models to determine the best fit for predictors of QoL. RESULTS: The final model explained 28.36% of the variance in QoL. Lower infertility-related social concerns were directly and indirectly related to higher QoL scores. Need for parenthood did not directly relate to QoL, instead relating directly to increased infertility-related social concerns. Higher acceptance of illness (ß = .39) and older age (ß = .19) were directly related to higher QoL scores. Female patients had higher need for parenthood (ß = .17). CONCLUSIONS: These findings suggest that social concerns and expectations surrounding infertility have a negative impact on AYA cancer survivors' and patients' QoL, which increases as AYAs approach socially normative parenting age. IMPLICATIONS FOR PRACTICE: Providing survivors with specialist support to manage their infertility-related social concerns and improve their acceptance of illness has the potential to improve their QoL.


Subject(s)
Cancer Survivors/psychology , Infertility, Female/psychology , Neoplasms/psychology , Quality of Life/psychology , Adolescent , Female , Humans , Infertility, Female/etiology , Interpersonal Relations , Male , Neoplasms/complications , Parents , Research Design , Young Adult
13.
Health Promot J Austr ; 32(1): 39-45, 2021 Jan.
Article in English | MEDLINE | ID: mdl-31821672

ABSTRACT

ISSUE ADDRESSED: Given the increasing prevalence of cancer, there is a growing need for health interventions educating individuals 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. METHODS: 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. RESULTS: Participants reported high satisfaction overall (92%-97%) and with each program component (71%-95%), and agreed that the program achieved learning outcomes (72%-95%). CONCLUSIONS: 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.


Subject(s)
Health Education , Neoplasms , Adolescent , Australia , Humans , Program Evaluation , Schools , Students
15.
Support Care Cancer ; 28(4): 1631-1638, 2020 Apr.
Article in English | MEDLINE | ID: mdl-31280364

ABSTRACT

PURPOSE: 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. METHODS: 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). RESULTS: 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. CONCLUSIONS: 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.


Subject(s)
Bereavement , Family/psychology , Neoplasms/psychology , Adolescent , Child , Female , Humans , Male , Mental Disorders/etiology , Mental Disorders/psychology , Mental Disorders/therapy , Needs Assessment , Parents/psychology , Siblings/psychology , Social Support , Young Adult
16.
Support Care Cancer ; 28(8): 3637-3648, 2020 Aug.
Article in English | MEDLINE | ID: mdl-31811484

ABSTRACT

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.


Subject(s)
Bereavement , Health Services Needs and Demand , Neoplasms/psychology , Psychometrics/methods , Adolescent , Adult , Child , Factor Analysis, Statistical , Female , Grief , Humans , Male , Parents/psychology , Siblings/psychology , Social Support , Surveys and Questionnaires , Young Adult
17.
Psychooncology ; 28(12): 2323-2335, 2019 12.
Article in English | MEDLINE | ID: mdl-31709669

ABSTRACT

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.


Subject(s)
Adult Children/psychology , Child of Impaired Parents/psychology , Consumer Health Information , Internet , Neoplasms/psychology , Parenting/psychology , Parents/psychology , Adolescent , Adult , Humans , Young Adult
20.
Scand J Caring Sci ; 31(1): 191-200, 2017 Mar.
Article in English | MEDLINE | ID: mdl-27163582

ABSTRACT

RATIONALE: 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. OBJECTIVES: (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. DESIGN: 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). MAIN OUTCOME MEASURES: OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. RESULTS: 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. CONCLUSIONS: 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.


Subject(s)
Caregivers/psychology , Chronic Disease/nursing , Family/psychology , Neoplasms/nursing , Neoplasms/psychology , Quality of Life/psychology , Stress, Psychological , Adolescent , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Reproducibility of Results , Surveys and Questionnaires , United Kingdom , Young Adult
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