Parental cancer may impact children's long-term well-being. Further investigations are needed in this area. Additionally, review of support programs and interventions are warranted in terms of their uptake and impact on families affected by a parent's cancer.

No abstract

AimsTo examine trends in colorectal cancer (CRC) incidence and colonoscopy history in adolescents and young adults (AYAs) aged 15–39 years in Western Australia (WA) from 1982 to 2007.DesignDescriptive cohort study using population-based linked hospital and cancer registry data.MethodFive-year age-standardized and age-specific incidence rates of CRC were calculated for all AYAs and by sex. Temporal trends in CRC incidence were investigated using Joinpoint regression analysis. The annual percentage change (APC) in CRC incidence was calculated to identify significant time trends. Colonoscopy history relative to incident CRC diagnosis was examined and age and tumor grade at diagnosis compared for AYAs with and without pre-diagnosis colonoscopy. CRC-related mortality within 5 and 10 years of incident diagnosis were compared for AYAs with and without pre-diagnosis colonoscopy using mortality rate ratios (MRRs) derived from negative binomial regression.ResultsAge-standardized CRC incidence among AYAs significantly increased in WA between 1982 and 2007, APC = 3.0 (95% CI 0.7–5.5). Pre-diagnosis colonoscopy was uncommon among AYAs (6.0%, 33/483) and 71% of AYAs were diagnosed after index (first ever) colonoscopy. AYAs with pre-diagnosis colonoscopy were older at CRC diagnosis (mean 36.7 ± 0.7 years) compared to those with no prior colonoscopy (32.6 ± 0.2 years), p < 0.001. At CRC diagnosis, a significantly greater proportion of AYAs with pre-diagnosis colonoscopy had well-differentiated tumors (21.2%) compared to those without (5.6%), p = 0.001. CRC-related mortality was significantly lower for AYAs with pre-diagnosis colonoscopy compared to those without, for both 5-year [MRR = 0.44 (95% CI 0.27–0.75), p = 0.045] and 10-year morality [MRR = 0.43 (95% CI 0.24–0.83), p = 0.043].ConclusionCRC incidence among AYAs in WA has significantly increased over the 25-year study period. Pre-diagnosis colonoscopy is associated with lower tumor grade at CRC diagnosis as well as significant reduction in both 5- and 10-year CRC-related mortality rates. These findings warrant further research into the balance in benefits and harms of targeted screening for AYA at highest risk.

Objective: The National Bowel Cancer Screening Program (NBCSP) is a population-based screening program based on a mailed screening invitation and immunochemical faecal occult blood test. Initial published evidence from the NBCSP concurs with international evidence on similar colorectal cancer screening programs about the unequal participation by different population sub-groups. The aim of the paper is to present an analysis of the equity of the NBCSP for South Australia, using the concept of horizontal equity, in order to identify geographical areas and population groups which may benefit from targeted approaches to increase participation rates in colorectal cancer screening. Method: De-identified data from the NBCSP (February 2007 to July 2008) were provided by Medicare Australia. Univariate and multivariate statistical analyses were undertaken in order to identify the predictors of participation rates in the NBCSP. Results: The overall participation rate was 46.1%, although this was statistically significantly different (p<0.001) by gender (42.6% for males and 49.5% for females), socioeconomic status (40% in most deprived quintile through to 48.1% in most affluent quintile) and remoteness (45.6% for metropolitan, 46% for remote and 48.6% for rural areas). These findings were confirmed in multivariate analyses. Of the NBCSP participants, 0.24% (CI 95% 0.20-0.30) identified themselves as Indigenous and 8% (CI 95% 7.7-8.3) reported speaking a language other than English at home. Conclusion: Findings from this study suggest inequities in participation in the NBCSP on the basis of gender, geographical location, Indigenous status and language spoken at home.

This study reviewed the literature regarding the psychological, social, and behavioural impact of parental cancer on offspring aged 10-24 years, at the time of the parent's first diagnosis. A systematic literature review was conducted following 2015 PRISMA guidelines. Seven studies met inclusion criteria. Offspring were impacted by their parent's cancer and experienced psychological and behavioural problems. Daughters and offspring who experienced more problems at their parent's diagnosis appeared to be most impacted. Offspring refrained from communicating their disease-related concerns, but expected their parents to communicate openly. Turning to oneself and peer-support were coping strategies used by offspring. The majority of offspring were significantly impacted by their parent's cancer. The paucity of literature focusing on offspring aged 10-24 years at the time of their parent's incident cancer diagnosis indicates that research has overlooked offspring age at their parent's cancer onset as a factor that may influence their future outcomes.

No abstract

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population.

Persistent underperformance of public policy and program implementation in Aboriginal affairs is widely recognised. We analysed the results of two case studies of attempted reforms in public administration of Aboriginal primary health care in the Northern Territory, using a framework based on the institutionalist and systemic racism literatures, with the aim of better understanding the sources of implementation failure. Implementation of the agreed reforms was unsuccessful. Contributing factors were as follows: strong recognition of the need for change was not sustained; the seeds of change, present in the form of alternative practices, were not built on; there was a notable absence of sustained political/bureaucratic authorisation; and, interacting with all of these, systemic racism had important consequences and implications. Our This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.