Keeping the Agenda Current: Evolution of Australian Lived Experience Mental Health Research Priorities.
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ABSTRACT:
SUBMITTER: Gulliver A
PROVIDER: S-EPMC9265903 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BACKGROUND:The perspectives of mental health consumers and carers are increasingly recognised as important to the development and conduct of research. However, research directions are still most commonly developed without consumer and carer input. This project aimed to establish priorities for mental health research driven by the views of consumers and carers in Australia. METHOD:The project was conducted in two studies. Firstly, a face-to-face discussion forum held in the Australian Capital Territory (Study 1; n?=?25), followed by a national online survey (Study 2; n?=?70). Participants in both studies were members of the community who identified as a mental health consumer, carer or both. In Study 1, participants developed topics for mental health research in small group discussions, then voted on which topics, developed across all groups and sorted into thematic areas, were a priority. An online survey was developed from these research topics. Study 2 participants were asked to rate topics on a 5-point priority scale and rank the relative importance of the highest-rated topics. RESULTS:At the forum, 79 topics were generated and grouped into 14 thematic areas. Votes on priorities were spread across a large number of topics, with the greatest overall support for research relating to integrating care that is sensitive to past experiences of trauma into mental health service delivery (trauma-informed care). Survey responses were similarly spread, with the majority of research topics rated as important by at least 50% of participants and no clear individual priorities for research identified. Amongst items rated as important by approximately 80% of participants, key research areas included the delivery of services, and consumer and carer involvement. CONCLUSIONS:Australian mental health consumers and carers demonstrate a strong understanding of the mental health system and its inadequacies. Although clear specific priorities are difficult to establish, consistent areas of focus are services and the role consumers and carers can play in their improvement. However, for consumer and carer views to be at the forefront of research, it is important to regularly update research agendas and work in partnership across the whole research process.
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Project description:To describe the two-stage prioritization process being used by the UK National Institute for Health Research's Collaboration for Leadership in Applied Health Research and Care for the South-West Peninsula (or PenCLAHRC) - a joint health service and university partnership and reflect on implications for the wider context of priority setting in health-care research.PenCLAHRC's process establishes the priorities of Stakeholders including service users across a regional health system for locally relevant health services research and implementation. Health research questions are collected from clinicians, academics and service users in Devon and Cornwall (UK) using a web-based question formulation tool. There is a two-stage prioritization process which uses explicit criteria and a wide Stakeholder group, including service users to identify important research questions relevant to the south-west peninsula locality.To date, a wide variety of health research topics have been prioritized by the PenCLAHRC Stakeholders. The research agenda reflects the interests of academics, clinicians and service users in the local area. Potential challenges to implementation of the process include time constraints, variable quality of questions (including the language of research) and initiating and maintaining engagement in the process. Shared prioritization of local health research needs can be achieved between Stakeholders from a wide range of perspectives.The processes developed have been successful and, with minor changes, will continue to be used during subsequent rounds of prioritization. Engagement of Stakeholders in establishing a research agenda encourages the most relevant health questions to be asked and may improve implementation of research findings and take up by service users.
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Project description:The field of mobile health ("m-Health") is evolving rapidly and there is an explosive growth of psychological tools on the market. Exciting high-tech developments may identify symptoms, help individuals manage their own mental health, encourage help seeking, and provide both preventive and therapeutic interventions. This development has the potential to be an efficient cost-effective approach reducing waiting lists and serving a considerable portion of people globally ("g-Health"). However, few of the mobile applications (apps) have been rigorously evaluated. There is little information on how valid screening and assessment tools are, which of the mobile intervention apps are effective, or how well mobile apps compare to face-to-face treatments. But how feasible is rigorous scientific evaluation with the rising demands from policy makers, business partners, and users for their quick release? In this paper, developments in m-Health tools-targeting screening, assessment, prevention, and treatment-are reviewed with examples from the field of trauma and posttraumatic stress disorder. The academic challenges in developing and evaluating m-Health tools are being addressed. Evidence-based guidance is needed on appropriate research designs that may overcome some of the public and ethical challenges (e.g., equity, availability) and the market-driven wish to have mobile apps in the "App Store" yesterday rather than tomorrow.
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Project description:Methylmalonic acidemia (MMA) is a lethal, severe heterogeneous disorder of methylmalonate and cobalamin (cbl; vitamin B12) metabolism with poor prognosis. Two main forms of the disease have been identified, isolated methylmalonic acidurias and combined methylmalonic aciduria and homocystinuria, which is respectively caused by different gene mutations. Here, we review the improvement of pathogenesis, diagnosis and treatment in MMA. Importantly, the reported epidemiological data of MMA patients in China and the hot mutation sites in Chinese patients are listed, which will aid in improving healthcare of Chinese patients in the future. c.729_730insTT was the most common mutation in Chinese isolated MMA patients, while c.609G>A and c.658_660delAAG were in Chinese cblC type patients according to unrelated studies. The estimated newborn screening incidence was reported to be 1:26,000, 1:3,920, 1:11,160, 1:6,032 respectively in Beijing and Shanghai, Shandong province, Taian district, and Henan province of China. Alternatively, when patients with suspected inherited metabolic diseases were used as the screened sample, the relatively high incidence 0.3% and 1.32% were respectively obtained in southern China and throughout all the provinces of mainland China and Macao with the exception of five provinces (Hainan, Neimenggu, Tibet, Ningxia, and Hong Kong).
| S-EPMC5982627 | biostudies-literature
Project description:BackgroundThe high prevalence of mental distress among university students is gaining academic, policy and public attention. As the volume of research into student mental health increases, it is important to involve students to ensure that the evidence produced can translate into meaningful improvements.AimsFor the first time, we consult UK students about their research priorities on student mental health.MethodThis priority setting exercise involved current UK university students who were asked to submit three research questions relating to student mental health. Responses were aggregated into themes through content analysis and considered in the context of existing research. Students were involved throughout the project, including inception, design, recruitment, analysis and dissemination.ResultsUK university students (N = 385) submitted 991 questions, categorised into seven themes: epidemiology, causes and risk factors, academic factors and work-life balance, sense of belonging, intervention and services, mental health literacy and consequences. Across themes, respondents highlighted the importance of understanding the experience of minority groups.ConclusionsStudents are interested in understanding the causes and consequences of poor mental health at university, across academic and social domains. They would like to improve staff and students' knowledge about mental health, and have access to evidence-based support. Future research should take a broad lens to evaluate interventions; considering how services are designed and delivered, and investigating institutional and behavioural barriers to accessibility, including how this varies across different groups within the student population.
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Project description:An estimated 30-50% of patients admitted to acute medical care settings experience co-morbid physical and mental illness. Research suggests that health professionals in these settings find managing this patient group challenging. A number of studies have investigated health professional's attitudes and perceptions however there is limited research that investigates the lived experience in a current Australian healthcare context. The aim of this study was to explicate an in-depth description of the health professional's experience when caring for patients experiencing co-morbid physical and mental illness in Australian acute medical care settings.A phenomenological design was undertaken with six participants representing nursing and medical disciplines. In 2013-2014 one-on-one semi-structured interviews were used and the data collected underwent thematic analysis using an extended version of Colaizzi's phenomenological inquiry.Six themes emerged including—challenging behaviours, environmental and organisational factors, lack of skills, knowledge and experience, hyper-vigilance and anxiety, duty of care and negative attitudes with an overarching theme of fear of the unknown.Staff in acute medical care settings were unsure of patients with mental illness and described them as unpredictable, identifying that they lacked requisite mental health literacy. Regular training is advocated.
| S-EPMC4494698 | biostudies-literature
Project description:BackgroundAccelerated by the coronavirus disease 2019 (Covid-19) pandemic, major and lasting changes are occuring in healthcare structures, impacting people's experiences and value creation in all aspects of their lives. Information systems (IS) research can support analysing and anticipating resulting effects.AimThe purpose of this study is to examine in what areas health information systems (HIS) researchers can assess changes in healthcare structures and, thus, be prepared to shape future developments.MethodA hermeneutic framework is applied to conduct a literature review and to identify the contributions that IS research makes in analysing and advancing the healthcare industry.ResultsWe draw an complexity theory by borrowing the concept of 'zooming-in and out', which provides us with a overview of the current, broad body of research in the HIS field. As a result of analysing almost 500 papers, we discovered various shortcomings of current HIS research.ContributionWe derive future pathways and develop a research agenda that realigns IS research with the transformation of the healthcare industry already under way.Supplementary informationThe online version contains supplementary material available at 10.1007/s12525-021-00484-1.
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Project description: Not available
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Project description:Suicide is a major public health concern in Australia and globally, requiring targeted research efforts to build the evidence base for its effective prevention. We examined current and future priorities in Australian suicide prevention research during the period 2010?2017, and compared these to 1999?2006 baseline data. We classified current research priorities in terms of the type of research published in 424 journal articles and 36 grants and fellowships funded during 2010?2017. A questionnaire administered to 390 stakeholders identified future research priorities. The total number of suicide prevention focussed journal articles and the value of funded grants increased dramatically. Congruent with baseline data, current research priorities in 2010?2017 reflected a strong emphasis on epidemiological studies, while funding for intervention studies declined. This is despite the fact that stakeholders continually identified intervention studies as being the highest future research priority. If we are to make real advances in suicide prevention, we need to know what works, and identify and test effective interventions. This study highlighted the existing dearth and continued need for intervention research. Mechanisms to support future intervention research in suicide prevention are likely to lead to significant gains in knowledge and population health.
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Project description:BackgroundUnemployment is known to involve various psychosocial challenges that can negatively impact mental health. However, the intricacies of how individuals experience these challenges and strive to cope within the context of varied sociocultural and individuating factors, remain comparatively understudied. The present qualitative study used an interpretative phenomenological approach to explore the lived experiences of mental health and coping during unemployment.MethodsFifteen Australian adults who had recently experienced unemployment (for ≥3 months in the last 2 years), despite being available for and able to work, participated in semi-structured interviews from August to September 2021. Maximum variation sampling ensured participants represented diverse sociodemographic backgrounds. Interviews were audio-recorded, transcribed verbatim and analysed using reflexive thematic analysis within NVivo12 software.ResultsFour major themes were identified: 1) disrupted identity and direction in life; 2) navigating conflicting views of contribution and progress; 3) knowing how to cope is not enough; and 4) unemployment as a catalyst for new understandings. Unemployment disrupted participants' sense of purpose, identity and visions for the future. It signified a perceived failure to meet societal standards of value based upon the economic functions of work, which participants struggled to reconcile with their own priorities for work that satisfied psychosocial needs. Participants were aware of effective coping strategies, although these had mixed positive and negative effects on mental health, or were difficult to mobilise during unemployment. The COVID-19 pandemic, while normalising unemployment to some degree, exacerbated future uncertainty and prevented engagement with known coping strategies (e.g., social interaction). However, unemployment could also instigate growth through re-defining markers of achievement, re-aligning goals with one's core values, and developing greater compassion.ConclusionsExperiences of mental health and coping during unemployment share complex relationships both with each other and with broader personal and sociocultural contexts. Service providers may better meet the mental health needs of those experiencing unemployment by balancing the economic and psychosocial functions of work, understanding that coping is a wholistic issue that goes beyond knowledge of effective strategies, and being aware of the opportunities for self-development that unemployment can create.
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