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 (
β
= 0.351**) which, in turn, predicted lower health-related quality of life (
β
= –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.
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.
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.
For decades, recycling of membrane proteins has been represented in figures by arrows between the "endosome" and the plasma membrane, but recently there has been an explosion in the understanding of ...the mechanisms and protein complexes required to facilitate protein recycling. Here, some key discoveries will be introduced, including assigning function to a number of recently recognized protein complexes and linking their function to protein recycling. Furthermore, the importance of lipid interactions and links to diseases and epithelial polarity will be summarized.
BACKGROUNDAdolescents 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.
OBJECTIVEThe 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.
METHODSCancer 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.
RESULTSThe 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 (β = .39) and older age (β = .19) were directly related to higher QoL scores. Female patients had higher need for parenthood (β = .17).
CONCLUSIONSThese findings suggest that social concerns and expectations surrounding infertility have a negative impact on AYA cancer survivorsʼ and patientsʼ QoL, which increases as AYAs approach socially normative parenting age.
IMPLICATIONS FOR PRACTICEProviding survivors with specialist support to manage their infertility-related social concerns and improve their acceptance of illness has the potential to improve their QoL.
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.
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.
Key points
Adolescents and young adults have a long time to live as survivors of cancer, and the negative effects of disease and treatment can compromise long‐term well‐being
Longitudinal research is important for understanding changes in outcomes over time
While a wide range of outcomes have been studied, the evidence to understand what changes occur and when remains underdeveloped
Purpose
To explore the resources, parents with cancer and their partners draw upon to sustain their family resilience through the cancer experience.
Methods
Fifteen participants who were parents of ...children aged 8 to 25 years completed phone, audio-recorded, and semi-structured interviews. Of these participants, 11 were parents diagnosed with cancer, and four were partners of a parent diagnosed with cancer. Interview questions aimed to increase understanding about how families communicate, connect, and face challenges from the cancer experience. Interview data was analysed using inductive thematic analysis to provide scope to generate themes from parent’s experiences rather than to test pre-existing frameworks.
Results
The thematic analysis of interview transcripts generated three key themes related to family resilience: (1) adaptability to changes in roles and routines, (2) open communication within the family, and (3) accepting support from others.
Conclusion
This study found that parents’ ability to use personal resources when faced with significant challenges helped to improve the resilience of parents’ family system. Further research is needed to understand the factors that influence family resilience when a parent is diagnosed with cancer. Implications for the development of targeted interventions that provide support to not only the patient, but their whole family system will be discussed.
•Findings from a mixed method study on health care provider (HCP) perspectives on LGBTQI cancer care.•Levels of HCP comfort in treating LGBTQI cancer patients was high, confidence and knowledge was ...low.•Knowledge gaps were most notable with trans and gender diverse (TGD) and intersex patients.•Education and training of HCPs will facilitate culturally safe and inclusive LGBTQI cancer care.
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.
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.
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.
Education of HCPs and health system changes are required to overcome barriers to the provision of culturally competent cancer care for LGBTQI patients.
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.
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