Research participation by people with intellectual disability and mental health issues : an examination of the processes of consent

Balancing the demands of research and ethics is always challenging and even more so when recruiting vulnerable groups. Within the context of current legislation and international human rights declarations, it is strongly advocated that research can and must be undertaken with all recipients of health care services. Research in the field of intellectual disability presents particular challenges in regard to consenting processes. This paper is a critical reflection and analysis of the complex processes undertaken and events that occurred in gaining informed consent from people with intellectual disability to participate in a study exploring their experiences of being an inpatient in mental health hospitals within Aotearoa/New Zealand. A framework based on capacity, information and voluntariness is presented with excerpts from the field provided to explore consenting processes. The practical implications of the processes utilised are then discussed in order to stimulate debate regarding clearer and enhanced methods of gaining informed consent from people with intellectual disability.

Associations between physical activity and other health behaviors in a representative sample of US adolescents

OBJECTIVES This study examined the associations between physical activity and other health behaviors in a representative sample of US adolescents. METHODS In the 1990 Youth Risk Behavior Survey, 11631 high school students provided information on physical activity; diet; substance use; and other negative health behaviors. Logistic regression analyses examined associations between physical activity and other health behaviors in a subset of 2652 high-active and 1641 low-active students. RESULTS Low activity was associated with cigarette smoking, marijuana use, lower fruit and vegetable consumption, greater television watching, failure to wear a seat belt, and low perception of academic performance. For consumption of fruit, television watching, and alcohol consumption, significant interactions were found with race/ethnicity or sex, suggesting that sociocultural factors may affect the relationships between physical activity and some health behaviors. CONCLUSIONS Low physical activity was associated with several other negative health behaviors in teenagers. Future studies should examine whether interventions for increasing physical activity in youth can be effective in reducing negative health behaviors.

Adaptations to a subterranean environment and longevity revealed by the analysis of mole rat genomes

Subterranean mammals spend their lives in dark, unventilated environments that are rich in carbon dioxide and ammonia and low in oxygen. Many of these animals are also long-lived and exhibit reduced aging-associated diseases, such as neurodegenerative disorders and cancer. We sequenced the genome of the Damaraland mole rat (DMR, Fukomys damarensis) and improved the genome assembly of the naked mole rat (NMR, Heterocephalus glaber). Comparative genome analyses, along with the transcriptomes of related subterranean rodents, revealed candidate molecular adaptations for subterranean life and longevity, including a divergent insulin peptide, expression of oxygen-carrying globins in the brain, prevention of high CO2-induced pain perception, and enhanced ammonia detoxification. Juxtaposition of the genomes of DMR and other more conventional animals with the genome of NMR revealed several truly exceptional NMR features: unusual thermogenesis, an aberrant melatonin system, pain insensitivity, and unique processing of 28S rRNA. Together, these genomes and transcriptomes extend our understanding of subterranean adaptations, stress resistance, and longevity.

Young people, participation and public space

Young people are major users of public space, White (1990,1998) Loader (1996). * Young people are constructed as ‘problem’ and ‘non citizens’, Brown (1998). * Young people report feeling unconsulted, not part of community life, Measor & Squires (2000), Article 12 (2000), Tyler et al (1998). * Young people and citizenship/participation is a major issue. * Public Space issues affect others also such as the homeless, aged, women, Indigenous people and people of middle eastern appearance.

Young people, citizenship and public space : a work in progress on issues and consequences

Tensions frequently occur when children and young people seek to make use of a multitude of public spaces (Loader 1996; White 1999).In Australia over a number of years, various strategies have been adopted by local councils, police and other stakeholders such as business groups, to respond to such tensions and disputes. However, rarely are children and young people involved in meaningful ways in the design and control of public space that reflects their needs and aspirations (White 1999; Freeman and Riordan 2002). This paper argues for a broader conceptualisation of the rights of citizenhip to include rights to use public space by children and young people.

Discrimination and mental health

The purpose of this study was to investigate the nature and prevalence of discrimination against people living with HIV/AIDS in West Bengal, India, and how discrimination is associated with depression, suicidal ideation and suicidal attempts. Semi-structured interviews and the Beck Depression Inventory were administered to 105 HIV infected persons recruited by incidental sampling, at an Integrated Counseling and Testing Center (ICTC) and through Networks of People Living with HIV/AIDS, in the West Bengal area. Findings showed that 40.8% of the sample has experienced discrimination at least in one social setting – such as family (29.1%), health centers (18.4%), community (17.5%) and workplace (6.8%). About two-fifths (40.8%) reported experiencing discrimination in multiple social settings. Demographic factors associated with discrimination were gender, age, occupation, education, and current residence. More than half of the sample was suffering from severe depression while 8.7% had attempted suicide. Discrimination in most areas was significantly associated with suicidal ideation and suicidal attempts. Prevalence of discrimination associated with HIV/AIDS is high in our sample from West Bengal. While discrimination was not associated with depressive symptomatology, discrimination was associated with suicidal ideation and attempts. These findings suggest that there is an urgent need for interventions to reduce discrimination of HIV/AIDS in the West Bengal region.

The affect heuristic and public support for three types of wood smoke mitigation policies

This study applied the affect heuristic model to investigate key psychological factors (affective associations, perceived benefits, and costs of wood heating) contributing to public support for three distinct types of wood smoke mitigation policies: education, incentives, and regulation. The sample comprised 265 residents of Armidale, an Australian regional community adversely affected by winter wood smoke pollution. Our results indicate that residents with stronger positive affective associations with wood heating expressed less support for wood smoke mitigation policies involving regulation. This relationship was fully mediated by expected benefits and costs associated with wood heating. Affective associations were unrelated to public support for policies involving education and incentives, which were broadly endorsed by all segments of the community, and were more strongly associated with rational considerations. Latent profile analysis revealed no evidence to support the proposition that some community members experience internal “heart versus head” conflicts in which their positive affective associations with wood heating would be at odds with their risk judgments about the dangers of wood smoke pollution. Affective associations and cost/benefit judgments were very consistent with each other.

The unequal distribution of road trauma in China : understanding risk factors to improve public health

The World Health Organization identifies road trauma as a major public health issue in every country; most notably among low-to-middle income countries. More than 90% of all road fatalities occur in these countries, although they have only 48% of all registered vehicles [1]. Unprecedented focus has been placed on reducing the global road trauma burden through the United Nations Decade of Action for Road Safety (2011-2020). China is rapidly transitioning from a nation of bicycle riders and pedestrians to one where car ownership and use is increasing. This transition presents important public health, mobility, and safety challenges. Rapid motorisation has resulted in an increased road trauma burden, shouldered disproportionately among the population. Vulnerable road users (bicyclists, pedestrians, and motorcyclists) are of particular concern, representing 70% of all road-related fatalities [1]. Furthermore, those at greatest risk of sustaining a crash-related disability are: male, older, less educated, and earning a lower income [2] and residing in urban areas [3], with higher fatality rates in north-western poorer provinces [3]. Speeding is a key factor in road crashes in China [1, 4] and is one of two risk factors targeted in the Bloomberg Philanthropies-funded Global Road Safety Program operating in two Chinese cities over five year [5] to which the first author has provided expert advice. However, little evidence exists to help understand the factors underpinning speeding behaviour. Previous research conducted by the authors in Beijing and Hangzhou explored personal, social, and legal factors relating to speeding to assist in better understanding the motivations for non-compliance with speed limits. Qualitative and quantitative research findings indicated that speeding is relatively common, including self-reported travel speeds of greater than 30 km/hour above posted speed limits [6], and that the road safety laws and enforcement practices may, in some circumstances, contribute to this [7]. Normative factors were also evident; the role of friends, family members and driving instructors were influential. Additionally, using social networks to attempt to avoid detection and penalty was reported, thereby potentially reinforcing community perceptions that speeding is acceptable [8, 9]. The authors established strong collaborative links with the Chinese Academy of Sciences and Zhejiang Police College to conduct this research. The first author has worked in both institutions for extended time periods and recognises that research must include an understanding of culturally-relevant issues if road safety is to improve in China. Future collaborations to assist in enhancing our understanding of such issues are welcomed. References [1] World Health Organization. (2009). Global status report on road safety: Time for action; Geneva. [2] Chen, H., Du, W., & Li, N. (2013). The socioeconomic inequality in traffic-related disability among Chinese adults: the application of concentration index. Accident Analysis & Prevention, 55(101-106). [3] Wang, S. Y., Li, Y. H., Chi, G. B., Xiao, S. Y., Ozanne-Smith, J., Stevenson, M., & Phillips, M. (2008). Injury-related fatalities in China: an under-recognised public-health problem. The Lancet (British edition), 372(9651), 1765-1773. [4] He, J., King, M. J., Watson, B., Rakotonirainy, A., & Fleiter, J. J. (2013). Speed enforcement in China: National, provincial and city initiatives and their success. Accident Analysis & Prevention, 50, 282-288. [5] Bhalla, K., Li, Q., Duan, L., Wang, Y., Bishai, D., & Hyder, A. A. (2013). The prevalence of speeding and drink driving in two cities in China: a mid project evaluation of ongoing road safety interventions. Injury, 44, 49-56. doi:10.1016/S0020-1383(13)70213-4. [6] Fleiter, J. J., Watson, B., & Lennon, A. (2013). Awareness of risky behaviour among Chinese drivers. Peer-reviewed paper presented at 23rd Canadian Multidisciplinary Road Safety Conference, Montréal, Québec. [7] Fleiter, J. J., Watson, B., Lennon, A., King, M. J., & Shi, K. (2009). Speeding in Australia and China: A comparison of the influence of legal sanctions and enforcement practices on car drivers. Peer-reviewd paper presented at Australasian Road Safety Research Policing Education Conference, Sydney. [8] Fleiter, J. J., Watson, B., Lennon, A., King, M. J., & Shi, K. (2011). Social influences on drivers in China. Journal of the Australasian College of Road Safety, 22(2), 29-36. [9] Fleiter, J. J., Watson, B., Guan, M. Q., Ding, J. Y., & Xu, C. (2013). Characteristics of Chinese Drivers Attending a Mandatory Training Course Following Licence Suspension. Peer-reviewed paper presented at Road Safety on Four Continents, Beijing, China.

Sustainability of public health interventions to reduce the risk of dioxin exposure at severe dioxin hot spots in Vietnam

Severe dioxin contamination at Bien Hoa and Da Nang airbases, Vietnam is of international concern. Public Health risk reduction programs were implemented in Bien Hoa in 2007-2009 and in Da Nang in 2009-2011. In 2009 and 2011 we reported the encouraging results of these interventions in improving the knowledge, attitude and practices (KAP) of local residents in reducing the dioxin exposure risk through foods. In 2013 we revisited these dioxin hot spots, aimed to evaluate whether the results of the intervention were maintained and to identify factors affecting the sustainability of the programs. To assess this, 16 in-depth interviews, six focus group discussions, and pre and post intervention KAP surveys were undertaken. 800 respondents from six intervention wards and 200 respondents from Buu Long Ward (the control site) were randomly selected to participate in the surveys. The results showed that as of 2013, the programs were rated as "moderately sustained" with a score of 3.3 out of 5.0 (cut off points 2.5 to <3.5) for Bien Hoa, and "well sustained" with a score of 3.8 out of 5.0 (cut off points 3.5 to <4.5) for Da Nang. Most formal intervention program activities had ceased and dioxin risk communication activities were no longer integrated into local routine health education programs. However, the main outcomes were maintained and were better than that in the control ward. Migration, lack of official guidance from City People's Committees and local authorities as well as the politically sensitive nature of dioxin issues were the main challenges for the sustainability of the programs.

Study burden, academic stress and mental health among high school students in Vietnam

Pressure on children to succeed in high schools is a serious problem in Asian societies. The focus of this study in three provinces of Vietnam was to identify the thresholds at which supplementary study has positive or negative effects on mental health and academic achievement. The findings contribute evidence for parents, teachers and young people about optimal levels of supplementary study (2–3 hours per day) and the most beneficial mode (self-study versus cram classes and private tutors). The work will be used to inform policy makers about strategies to minimize harmful effects of study burden for high school students.

Text mining for screening efficiency? Testing within a Cochrane public health review

Background The requirement for dual screening of titles and abstracts to select papers to examine in full text can create a huge workload, not least when the topic is complex and a broad search strategy is required, resulting in a large number of results. An automated system to reduce this burden, while still assuring high accuracy, has the potential to provide huge efficiency savings within the review process. Objectives To undertake a direct comparison of manual screening with a semi‐automated process (priority screening) using a machine classifier. The research is being carried out as part of the current update of a population‐level public health review. Methods Authors have hand selected studies for the review update, in duplicate, using the standard Cochrane Handbook methodology. A retrospective analysis, simulating a quasi‐‘active learning’ process (whereby a classifier is repeatedly trained based on ‘manually’ labelled data) will be completed, using different starting parameters. Tests will be carried out to see how far different training sets, and the size of the training set, affect the classification performance; i.e. what percentage of papers would need to be manually screened to locate 100% of those papers included as a result of the traditional manual method. Results From a search retrieval set of 9555 papers, authors excluded 9494 papers at title/abstract and 52 at full text, leaving 9 papers for inclusion in the review update. The ability of the machine classifier to reduce the percentage of papers that need to be manually screened to identify all the included studies, under different training conditions, will be reported. Conclusions The findings of this study will be presented along with an estimate of any efficiency gains for the author team if the screening process can be semi‐automated using text mining methodology, along with a discussion of the implications for text mining in screening papers within complex health reviews.

A tsunami of unmet needs: Pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services

Objective People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people’s needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Methods Queensland pancreatic or ampullary cancer patients (n=136, 54% of those eligible) completed a survey which assessed 34 needs across 5 domains (SCNS-SF34) and use of health services. Differences by resection were compared with Chi-squared tests. Results Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs whereas, health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included ‘not being able to do things they used to do’ (41%), ‘concerns about the worries of those close’ (37%), and ‘uncertainty about the future’ (30%). Patients with non-resectable disease reported greater individual information needs but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. Conclusion Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.