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.

Randomized trial of a clinic-based, community-supported, lifestyle intervention to improve physical activity and diet : The North Carolina enhanced WISEWOMAN project

Objective To determine if a clinic-based behavioral intervention program for low-income mid-life women that emphasizes use of community resources will increase moderate intensity physical activity (PA) and improve dietary intake. Methods Randomized trial conducted from May 2003 to December 2004 at one community health center in Wilmington, NC. A total of 236 women, ages 40–64, were randomized to receive an Enhanced Intervention (EI) or Minimal Intervention (MI). The EI consisted of an intensive phase (6 months) including 2 individual counseling sessions, 3 group sessions, and 3 phone calls from a peer counselor followed by a maintenance phase (6 months) including 1 individual counseling session and 7 monthly peer counselor calls. Both phases included efforts to increase participants' use of community resources that promote positive lifestyle change. The MI consisted of a one-time mailing of pamphlets on diet and PA. Outcomes, measured at 6 and 12 months, included the comparison of moderate intensity PA between study groups as assessed by accelerometer (primary outcome) and questionnaire, and dietary intake assessed by questionnaire and serum carotenoids (6 months only). Results For accelerometer outcomes, follow-up was 75% at 6 months and 73% at 12 months. Though moderate intensity PA increased in the EI and decreased in the MI, the difference between groups was not statistically significant (p = 0.45; multivariate model, p = 0.08); however, moderate intensity PA assessed by questionnaire (92% follow-up at 6 months and 75% at 12 months) was greater in the EI (p = 0.01; multivariate model, p = 0.001). For dietary outcomes, follow-up was 90% for questionnaire and 92% for serum carotenoids at 6 months and 74% for questionnaire at 12 months. Dietary intake improved more in the EI compared to the MI (questionnaire at 6 and 12 months, p < 0.001; serum carotenoid index, p = 0.05; multivariate model, p = 0.03). Conclusion The EI did not improve objectively measured PA, but was associated with improved self-reported and objective measures of dietary intake.

Factors that influence young people's mental health help‐seeking behaviour : a study based on the Health Belief Model

Aim To identify key predictors and moderators of mental health ‘help-seeking behavior’ in adolescents. Background Mental illness is highly prevalent in adolescents and young adults; however, individuals in this demographic group are among the least likely to seek help for such illnesses. Very little quantitative research has examined predictors of help-seeking behaviour in this demographic group. Design A cross-sectional design was used. Methods A group of 180 volunteers between the ages of 17–25 completed a survey designed to measure hypothesized predictors and moderators of help-seeking behaviour. Predictors included a range of health beliefs, personality traits and attitudes. Data were collected in August 2010 and were analysed using two standard and three hierarchical multiple regression analyses. Findings The standard multiple regression analyses revealed that extraversion, perceived benefits of seeking help, perceived barriers to seeking help and social support were direct predictors of help-seeking behaviour. Tests of moderated relationships (using hierarchical multiple regression analyses) indicated that perceived benefits were more important than barriers in predicting help-seeking behaviour. In addition, perceived susceptibility did not predict help-seeking behaviour unless individuals were health conscious to begin with or they believed that they would benefit from help. Conclusion A range of personality traits, attitudes and health beliefs can predict help-seeking behaviour for mental health problems in adolescents. The variable ‘Perceived Benefits’ is of particular importance as it is: (1) a strong and robust predictor of help-seeking behaviour, and; (2) a factor that can theoretically be modified based on health promotion programmes.

Study Protocol - Alcohol Management Plans (AMPs) in remote indigenous communities in Queensland: their impacts on injury, violence, health and social indicators and their cost-effectiveness

Background In 2002/03 the Queensland Government responded to high rates of alcohol-related harm in discrete Indigenous communities by implementing alcohol management plans (AMPs), designed to include supply and harm reduction and treatment measures. Tighter alcohol supply and carriage restrictions followed in 2008 following indications of reductions in violence and injury. Despite the plans being in place for over a decade, no comprehensive independent review has assessed to what level the designed aims were achieved and what effect the plans have had on Indigenous community residents and service providers. This study will describe the long-term impacts on important health, economic and social outcomes of Queensland’s AMPs. Methods/Design The project has two main studies, 1) outcome evaluation using de-identified epidemiological data on injury, violence and other health and social indicators for across Queensland, including de-identified databases compiled from relevant routinely-available administrative data sets, and 2) a process evaluation to map the nature, timing and content of intervention components targeting alcohol. Process evaluation will also be used to assess the fidelity with which the designed intervention components have been implemented, their uptake and community responses to them and their perceived impacts on alcohol supply and consumption, injury, violence and community health. Interviews and focus groups with Indigenous residents and service providers will be used. The study will be conducted in all 24 of Queensland’s Indigenous communities affected by alcohol management plans. Discussion This evaluation will report on the impacts of the original aims for AMPs, what impact they have had on Indigenous residents and service providers. A central outcome will be the establishment of relevant databases describing the parameters of the changes seen. This will permit comprehensive and rigorous surveillance systems to be put in place and provided to communities empowering them with the best credible evidence to judge future policy and program requirements for themselves. The project will inform impending alcohol policy and program adjustments in Queensland and other Australian jurisdictions. The project has been approved by the James Cook University Human Research Ethics Committee (approval number H4967 & H5241).

Management of atopic dermatitis in children : evaluation of parents' self-efficacy, outcome expectations, and self-reported task performance using the Child Eczema Management Questionnaire

Child behaviour management is crucial to successful treatment of atopic dermatitis. This study tested relationships between parents’ self-efficacy, outcome expectations, and self-reported task performance when caring for a child with atopic dermatitis. Using a cross-sectional study design, a community-based convenience sample of 120 parents participated in pilot-testing of the Child Eczema Management Questionnaire - a self-administered questionnaire which appraises parents’ self-efficacy, outcome expectations, and self-reported task performance when managing atopic dermatitis. Overall, parents’ self-reported confidence and success with performing routine management tasks was greater than that for managing their child’s symptoms and behaviour. Therewas a positive relationship between time since diagnosis and self-reported performance of routine management tasks; however, success with managing the child’s symptoms and behaviour did not improve with illness duration. Longer time since diagnosis was also associated with more positive outcome expectations of performing tasks that involved others in the child’s care (i.e. healthcare professionals, or the child themselves). This study provides the foundation for further research examining relationships between child, parent, and family psychosocial variables, parent management of atopic dermatitis, and child health outcomes. Improved understanding of these relationships will assist healthcare providers to better support parents and families caring for children with atopic dermatitis. KEYWORDS

eHealth-as-a-Service (eHaaS) : the industrialisation of health informatics, a practical approach

With the introduction of the Personally Controlled Health Record (PCEHR), the Australian public is being asked to accept greater responsibility for their healthcare. Although well designed, constructed and intentioned, policy and privacy concerns have resulted in an eHealth model that may impact future health information sharing requirements. Thus an opportunity to transform the beleaguered Australian PCEHR into a sustainable on-demand technology consumption model for patient safety must be explored further. Moreover, the current clerical focus of healthcare practitioners must be renegotiated to establish a shared knowledge creation landscape of action for safer patient interventions. To achieve this potential however requires a platform that will facilitate efficient and trusted unification of all health information available in real-time across the continuum of care. As a conceptual paper, the goal of the authors is to deliver insights into the antecedents of usage influencing superior patient outcomes within an eHealth-as-a-Service framework. To achieve this, the paper attempts to distil key concepts and identify common themes drawn from a preliminary literature review of eHealth and cloud computing concepts, specifically cloud service orchestration to establish a conceptual framework and a research agenda. Initial findings support the authors’ view that an eHealth-as-a-Service (eHaaS) construct will serve as a disruptive paradigm shift in the aggregation and transformation of health information for use as real-world knowledge in patient care scenarios. Moreover, the strategic value of extending the community Health Record Bank (HRB) model lies in the ability to automatically draw on a multitude of relevant data repositories and sources to create a single source of practice based evidence and to engage market forces to create financial sustainability.

What keeps nurses busy in the mental health setting?

The foundation of mental health nursing has historically been grounded in an interpersonal, person-centred process of health care, yet recent evidence suggests that the interactional work of mental health nursing is being eroded. Literature emphasizes the importance of person-centred care on consumer outcomes, a model reliant upon the intimate engagement of nurses and consumers. Yet, the arrival of medical interventions in psychiatry has diverted nursing work from the therapeutic nursing role to task-based roles delegated by medicine, distancing nurses from consumers. This study used work sampling methodology to observe the proportion of time nurses working in an inpatient mental health setting spend in the activities of direct care, indirect care and service-related activities. Nurses spent 32 of their time in direct care, 52% in indirect care and 17% in service-related activities. Mental health nurses need to re-establish their therapeutic availability to maximize consumer experiences and outcomes.

The clinical utility of the Cornell Scale for Depression in Dementia as a routine assessment in nursing homes

Objective To examine the clinical utility of the Cornell Scale for Depression in Dementia (CSDD) in nursing homes. Setting 14 nursing homes in Sydney and Brisbane, Australia. Participants 92 residents with a mean age of 85 years. Measurements Consenting residents were assessed by care staff for depression using the CSDD as part of their routine assessment. Specialist clinicians conducted assessment of depression using the Semi-structured Clinical Diagnostic Interview for DSM-IV-TR Axis I Disorders for residents without dementia or the Provisional Diagnostic Criteria for Depression in Alzheimer Disease for residents with dementia to establish expert clinical diagnoses of depression. The diagnostic performance of the staff completed CSDD was analyzed against expert diagnosis using receiver operating characteristic (ROC) curves. Results The CSDD showed low diagnostic accuracy, with areas under the ROC curve being 0.69, 0.68 and 0.70 for the total sample, residents with dementia and residents without dementia, respectively. At the standard CSDD cutoff score, the sensitivity and specificity were 71% and 59% for the total sample, 69% and 57% for residents with dementia, and 75% and 61% for residents without dementia. The Youden index (for optimizing cut-points) suggested different depression cutoff scores for residents with and without dementia. Conclusion When administered by nursing home staff the clinical utility of the CSDD is highly questionable in identifying depression. The complexity of the scale, the time required for collecting relevant information, and staff skills and knowledge of assessing depression in older people must be considered when using the CSDD in nursing homes.

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.

Improving wound management for residents in Residential Aged Care Facilities: National dissemination and implementation of the evidence based Champions for Skin Integrity Program

Overview The incidence of skin tears, pressure injuries and chronic wounds increases with age [1-4] and therefore is a serious issue for staff and residents in Residential Aged Care Facilities (RACFs). A pilot project funded in Round 2 of the Encouraging Best Practice in Residential Aged Care (EBPRAC) program by the then Australian Government Department of Health and Ageing found that a substantial proportion of residents in aged care facilities experienced pressure injuries, skin tears or chronic wounds. It also found the implementation of the evidence based Champions for Skin Integrity (CSI) model of wound care was successful in significantly decreasing the prevalence and severity of wounds in residents, improving staff skills and knowledge of evidence based wound management, increasing staff confidence with wound management, increasing implementation of evidence based wound management and prevention strategies, and increasing staff awareness of their roles in evidence based wound care at all levels [5]. Importantly, during the project, the project team developed a resource kit on evidence based wound management. Two critical recommendations resulting from the project were that: - The CSI model or a similar strategic approach should be implemented in RACFs to facilitate the uptake of evidence based wound management and prevention - The resource kit on evidence based wound management should be made available to all Residential Aged Care Facilities and interested parties A proposal to disseminate or rollout the CSI model of wound care to all RACFs across Australia was submitted to the department in 2012. The department approved funding from the Aged Care Services Improvement Healthy Ageing Grant (ACSIHAG) at the same time as the Round 3 of the Encouraging Better Practice in Aged Care (EBPAC) program. The dissemination involved two crucial elements: 1. The updating, refining and distribution of a Champions for Skin Integrity Resource Kit, more commonly known as a CSI Resource Kit and 2. The presentation of intensive one day Promoting Healthy Skin “Train the Trainer” workshops in all capital cities and major regional towns across Australia Due to demand, the department agreed to fund a second round of workshops focussing on regional centres and the completion date was extended to accommodate the workshops. Later, the department also decided to host a departmental website for a number of clinical domains, including wound management, so that staff from the residential aged care sector had easy access to a central repository of helpful clinical resource material that could be used for improving the health and wellbeing of their older adults, consumers and carers. CSI Resource Kit Upgrade and Distribution: At the start of the project, a full evidence review was carried out on the material produced during the EBPRAC-CSI Stage 1 project and the relevant evidence based changes were made to the documentation. At the same time participants in the EBPRAC-CSI Stage 1 project were interviewed for advice on how to improve the resource material. Following this the documentation, included in the kit, was sent to independent experts for peer review. When this process was finalised, a learning designer and QUT’s Visual Communications Services were engaged to completely refine and update the design of the resources, and combined resource kit with the goal of keeping the overall size of the kit suitable for bookshelf mounting and the cost at reasonable levels. Both goals were achieved in that the kit is about the same size as a 25 mm A4 binder and costs between $19.00 and $28.00 per kit depending on the size of the print run. The dissemination of the updated CSI resource kit was an outstanding success. Demand for the kits was so great that a second print run of 2,000 kits was arranged on top of the initial print run of 4,000 kits. All RACFs across Australia were issued with a kit, some 2,740 in total. Since the initial distribution another 1,100 requests for kits has been fulfilled as well as 1,619 kits being distributed to participants at the Promoting Healthy Skin workshops. As the project was winding up a final request email was sent to all workshop participants asking if they required additional kits or resources to distribute the remaining kits and resources. This has resulted in requests for 200 additional kits and resources. Feedback from the residential aged care sector and other clinical providers who have interest in wound care has been very positive regarding the utility of the kit, (see Appendix 4). Promoting Healthy Skin Workshops The workshops also exceeded the project team’s initial objective. Our goal of providing workshop training for staff from one in four facilities and 450 participants was exceeded, with overwhelming demand for workshop places resulting in the need to provide a second round of workshops across Australia. At the completion of the second round, 37 workshops had been given, with 1286 participants, representing 835 facilities. A number of strategies were used to promote the workshops ranging from invitations included in the kit, to postcard mail-outs, broadcast emailing to all facilities and aged care networks and to articles and paid advertising in aged care journals. The most effective method, by far, was directly phoning the facilities. This enabled the caller to contact the relevant staff member and enlist their support for the workshop. As this is a labour intensive exercise, it was only used where numbers needed bolstering, with one venue rising from 3 registrants before the calls to 53 registrants after. The workshops were aimed at staff who had the interest and the capability of implementing evidence-based wound management within their facility or organisation. This targeting was successful in that a large proportion (68%) of participants were Registered Nurses, Nurse Managers, Educators or Consultants. Twenty percent were Endorsed Enrolled Nurses with the remaining 12% being made up of Personal Care Workers or Allied Health Professionals. To facilitate long term sustainability, the workshop employed train-the-trainer strategies. Feedback from the EBPRAC-CSI Stage 1 interviews was used in the development of workshop content. In addition, feedback from the workshop conducted at the end of the EBPRAC-CSI Stage 1 project suggested that change management and leadership training should be included in the workshops. The program was trialled in the first workshop conducted in Brisbane and then rolled out across Australia. Participants were asked to complete pre and post workshop surveys at the beginning and end of the workshop to determine how knowledge and confidence improved over the day. Results from the pre and post surveys showed significant improvements in the level of confidence in attendees’ ability to implement evidence based wound management. The results also indicated a significant increase in the level of confidence in ability to implement change within their facility or organisation. This is an important indication that the inclusion of change management/leadership training with clinical instruction can increase staff capacity and confidence in translating evidence into practice. To encourage the transfer of the evidence based content of the workshop into practice, participants were asked to prepare an Action Plan to be followed by a simple one page progress report three months after the workshop. These reports ranged from simple (e.g. skin moisturising to prevent skin tears), to complex implementation plans for introducing the CSI model across the whole organisation. Outcomes described in the project reports included decreased prevalence of skin tears, pressure injuries and chronic wounds, along with increased staff and resident knowledge and resident comfort. As stated above, some organisations prepared large, complex plans to roll out the CSI model across their organisation. These plans included a review of the organisation’s wound care system, policies and procedures, the creation of new processes, the education of staff and clients, uploading education and resource material onto internal electronic platforms and setting up formal review and evaluation processes. The CSI Resources have been enthusiastically sought and incorporated into multiple health care settings, including aged care, acute care, Medicare Local intranets (e.g. Map of Medicine e-pathways), primary health care, community and home care organisations, education providers and New Zealand aged and community health providers. Recommendations: Recommendations for RACFs, aged care and health service providers and government  Skin integrity and the evidence-practice gap in this area should be recognised as a major health issue for health service providers for older adults, with wounds experienced by up to 50% of residents in aged care settings (Edwards et al. 2010). Implementation of evidence based wound care through the Champions for Skin Integrity model in this and the pilot project has demonstrated the prevalence of wounds, wound healing times and wound infections can be halved.  A national program and Centre for Evidence Based Wound Management should be established to: - expand the reach of the model to other aged care facilities and health service providers for older adults - sustain the uptake of models such as the Champions for Skin Integrity (CSI) model - ensure current resources, expertise and training are available for consumers and health care professionals to promote skin integrity for all older adults  Evidence based resources for the CSI program and similar projects should be reviewed and updated every 3 – 4 years as per NH&MRC recommendations  Leadership and change management training is fundamental to increasing staff capacity, at all levels, to promote within-organisation dissemination of skills and knowledge gained from projects providing evidence based training Recommendations for future national dissemination projects  A formal program of opportunities for small groups of like projects to share information and resources, coordinate activities and synergise education programs interactively would benefit future national dissemination projects - Future workshop programs could explore an incentive program to optimise attendance and reduce ‘no shows’ - Future projects should build in the capacity and funding for increased follow-up with workshop attendees, to explore the reasons behind those who are unable to translate workshop learnings into the workplace and identify factors to address these barriers.

Have you got what it takes? Nursing in a Psychiatric Intensive Care Unit

Purpose A Psychiatric Intensive Care Unit (PICU) and or High Dependency Unit (HDU) is a locked, intensive treatment facility available to people experiencing acute psychiatric distress. For many people who access public mental health services in Australia, the PICU/HDU is the primary point of admission, and should represent and facilitate timely assessment and an optimum treatment plan under a recovery framework. Nurses are the largest health discipline working in this specialty area of care. The paper aims to discuss these issues. Design/methodology/approach A qualitative study aimed to investigate the skills, experience, and practice, of nurses working in the PICU/HDU in relation to a recovery model of care. Identifying how nurses provide care in the PICU/HDU will inform a clinical practice guideline to further support this specialty area of care. Four focus groups were facilitated with 52 registered nurses attending. Findings The nurse participants identified specific skills under four distinct themes; Storytelling, Treatment and recovery, Taking responsibility, and Safeguarding. The skills highlight the expertise and clinical standard required to support a recovery model of care in the PICU. Research limitations/implications – The research findings highlight urgency for a National PICU/HDU clinical practice guideline. Practical implications A PICU/HDU practice guideline will promote the standard of nursing care required in the PICU/HDU. The PICU/HDU needs to be recognised as a patient centred, therapeutic opportunity as opposed to a restrictive and custodial clinical area. Social implications Providing transparency of practice in the PICU/HDU and educating nurses to this specialty area of care will improve client outcome and recovery. Originality/value Very few studies have explored the skills, experience, and practice, of nurses working in the PICU/HDU in relation to a recovery model of care. A dearth of research exists on what is required to work in this specialty area of care.

Health and prevention among East African women in the U.S.

African-born individuals in the U.S. face significant health challenges, including low utilization of preventive screening services. Using a community-based participatory research framework, we describe preliminary efforts at establishing a collaborative relationship with the East African communities of San Diego, identifying salient community health needs, and developing a framework for disseminating information and addressing identified health gaps. To this end, 40 East African-born women participated in focus groups with the purpose of eliciting community perspectives on U.S. health care services, beliefs about preventive screening, and to garner recommendations for future outreach. Qualitative analyses identified participants’ desire to engage in primary prevention techniques that incorporated best practices from their home countries and the U.S., and the need for health education programs to provide information on increasingly prevalent chronic diseases. The findings are discussed in connection with continued community-engaged efforts and the implications for health and resettlement policies to reduce inequities disfavoring resettled refugees.

Population health planning and health promotion: Opportunities and challenges to improve social determinants

Complex social factors and health issues challenge equitable health outcomes for many people, in particular those living in marginalised communities. Primary health care promises solutions through population health and health promotion approaches to improve social conditions (determinants) affecting health with emphasis on change at systems levels. Yet short-term efficiency focus policy decisions without long-term planning can undermine the effectiveness of primary health care. The workshop goal is to explore opportunities and share ideas about population health planning in Primary Health Networks and other community health care settings, so as to draw out opportunities, challenges and forward thinking health planning and health promotion strategies.

Aboriginal and Torres Strait Islander Health

The chapter introduces Aboriginal and Torres Strait Islander health and discusses the important role that Indigenous and non-Indigenous peoples can play in ‘closing the gap’ in health disparities as experienced by Aboriginal and Torres Strait Islander peoples.