Identifying barriers and facilitators to primary care practitioners implementing health assessments for people with intellectual disability: a Theoretical Domains Framework-informed scoping review.

INTRODUCTION: People with intellectual disability experience poorer health outcomes compared with the general population, partly due to the difficulties of accessing preventive care in primary care settings. There is good evidence that structured annual health assessments can enhance quality of care for people with intellectual disability, and their use has become recommended policy in several high-income countries. However, uptake remains low. The Theoretical Domains Framework (TDF) offers a conceptual structure for understanding barriers to implementation and has been usefully applied to inform implementation of health assessments for other high-need groups, but not for people with intellectual disability. We conducted a scoping review of the literature, using the TDF, to identify barriers and facilitators influencing primary care practitioners' implementation of annual health assessments for people with intellectual disability as part of routine primary care practice. METHODS: This study was conducted according to the JBI methodological approach for scoping reviews. Searches were conducted in Medline (OVID-SP), Embase (OVID-SP), PsycINFO (OVID-SP), CINHAL (EBSCO), Scopus (Elsevier) and Web of Science (Clarivate) for relevant peer-reviewed publications up to May 2023. Screening, full-text review and data extraction were completed by two independent reviewers. Data were extracted and mapped to the TDF to identify relevant barriers and facilitators. RESULTS: The search yielded 1057 publications, with 21 meeting the inclusion criteria. Mapping data to the TDF, the most frequently identified domains were (a) environmental context and resources, (b) skills, (c) knowledge and (d) emotion. Predominant factors impacting on implementation included practitioners' lack of awareness about health assessments and their identified benefits; inadequate training and experience by practitioners in the delivery of health assessments for people with intellectual disability; insufficient time to provide health assessments; and practitioner burnout. CONCLUSION: Using a theory-informed behavioural framework, our review aids understanding of the barriers and facilitators to improving the implementation of health assessments as part of routine care for people with intellectual disability. However, there is a clear need for further qualitative research to examine the perceptions of primary care practitioners regarding implementation barriers and facilitators to health assessments in general, including views from practitioners who are not currently undertaking health assessments.

University staff perspectives on determinants of high-quality health professions student placements in regional, rural and remote Australia: protocol for a mixed-method study.

INTRODUCTION: In rural areas, work-integrated learning in the form of health student placements has several potential benefits, including contributing to student learning, enhancing rural health service capacity and attracting future rural health workforce. Understanding what constitutes a high-quality rural placement experience is important for enhancing these outcomes. There is no current standardised definition of quality in the context of rural health placements, nor is there understanding of how this can be achieved across different rural contexts. This study is guided by one broad research question: what do university staff believe are the determinants of high-quality health professions student placements in regional, rural and remote Australia? METHODS AND ANALYSIS: This study will adopt a convergent mixed-method design with two components. Component A will use explanatory sequential mixed methods. The first phase of component A will use a survey to explore determinants that contribute to the development of high-quality health student placements from the perspective of university staff who are not employed in University Departments of Rural Health and are involved in the delivery of health student education. The second phase will use semistructured interviews with the same stakeholder group (non-University Department of Rural Health university staff) to identify the determinants of high-quality health student placements. Component B will use a case study Employing COnceptUal schema for policy and Translation Engagement in Research mind mapping method to capture determinants that contribute to the development of high-quality health student placements from the perspective of University Department of Rural Health university staff. ETHICS AND DISSEMINATION: The University of Melbourne Human Ethics Committee approved the study (2022-23201-33373-5). Following this, seven other Australian university human research ethics committees provided external approval to conduct the study. The results of the study will be presented in several peer-review publications and summary reports to key stakeholder groups.

Disability-related inequalities in the prevalence of loneliness across the lifespan: trends from Australia, 2003 to 2020.

BACKGROUND: Experiencing loneliness can be distressing and increasing evidence indicates that being lonely is associated with poor physical and mental health outcomes. Cross-sectional studies have demonstrated that people with disability have increased risk of experiencing loneliness compared to people without disability. However, we do not know if these inequalities have changed over time. This study investigated the prevalence of loneliness for people with disability in Australia annually from 2003 to 2020 to examine whether disability-related inequalities in loneliness have changed over time, and disaggregated results for subgroups of people with disability by age group, sex, and disability group. METHODS: We used annual data (2003-2020) from the Household, Income and Labour Dynamics in Australia Survey. Loneliness was measured by a single question assessing the subjective experience of loneliness. For each wave, we calculated population-weighted age-standardised estimates of the proportion of people experiencing loneliness for people with and without disability. We then calculated the absolute and relative inequalities in loneliness between people with and without disability for each wave. Analyses were stratified by 10-year age groups, sex, and disability group (sensory or speech, physical, intellectual or learning, psychological, brain injury or stroke, other). RESULTS: From 2003 to 2020, the prevalence of loneliness was greater for people with disability, such that people with disability were 1.5 to 1.9 times more likely to experience loneliness than people without disability. While the prevalence of loneliness decreased for people without disability between 2003 and 2020, the prevalence of loneliness did not decrease for people with disability during this period. Inequalities in loneliness were more substantial for people with intellectual or learning disabilities, psychological disability, and brain injury or stroke. CONCLUSION: This study confirms that people with disability have increased risk of loneliness compared to people without disability. We add to the existing evidence by demonstrating that disability-related inequalities in loneliness have persisted for two decades in Australia without improvement. Our findings indicate that addressing inequalities in loneliness for people with disability is a critical public health concern given that loneliness is associated with a wide range of poor health outcomes.

Communication and coordination of care for people living with HIV: a qualitative study of the patient perspective.

BACKGROUND: There is growing consensus that primary health care (PHC) providers have an important role in providing holistic, preventative care for people living with human immunodeficiency virus (PLHIV). In regional Australia, HIV care is primarily delivered through specialist services, thus adequate coordination and communication between specialist and PHC professionals is crucial. This study aimed to explore patient experiences of the coordination of care and health care professional communication for PLHIV in regional Australia. METHODS: Semi-structured interviews with PLHIV in a regional area of Australia were conducted in March to April 2022. Interviews were conducted via video conferencing, face-to-face, or via telephone call. Interviews were audio-recorded and manually transcribed. Transcripts were coded inductively and thematic analysis was conducted to explore perspectives on communication and coordination. RESULTS: Thirteen participants were interviewed. Most participants were male, aged 50-70, were diagnosed with HIV more than ten years ago, and had been living in regional Australia long-term. Through qualitative analysis, themes emerged in the following areas: (1) Patient perception of care coordination; (2) Patient understanding of modality of communication; (3) Positive attitudes towards communication between healthcare professionals; and (4) Concerns for information sharing between healthcare professionals. Many participants highlighted lack of clarity around care coordination as a key issue in their healthcare, with some citing themselves as the primary care coordinator. Participants identified that coordination and communication between PHC professionals and specialist services are essential in the delivery of their health care, but some were hesitant for this to occur. Hesitancy was entrenched in some patients' distrust of healthcare due to previous experiences of confidentiality breaches and stigma. CONCLUSION: This study identifies the need for clarity in coordination between health care professionals to deliver safe and effective HIV care, which may occur through care plans. Patient support for communication between healthcare providers may be strengthened by ensuring trust in the people and systems involved. Eliminating stigma in healthcare as well as building more trustworthy electronic-based communication technologies are essential components to trust-building between PLHIV and healthcare systems.

Producing knowledge together: a participatory approach to synthesising research across a large-scale collaboration in Aboriginal and Torres Strait Islander health.

BACKGROUND: Despite that stakeholder participation in evidence synthesis could result in more useful outcomes, there are few examples of processes that actively involve them in synthesis work. Techniques are needed that engage diverse stakeholders as equal partners in knowledge co-production. The aims of this paper are to describe an innovative participatory process of synthesising a large body of academic research products and compare the findings of the participatory process against two traditional approaches to synthesis: a rapid review and a structured review. METHODS: First, a rapid synthesis of all research outputs (n = 86) was conducted by researchers with in-depth knowledge of the collaboration's research. Second, a team of researchers and service providers conducted a structured synthesis of seventy-eight peer-reviewed articles and reports generated by the collaboration. Fifty-five publications were brought forward for further synthesis in part three, a facilitated participatory synthesis. Finally, we explored the value added by the participatory method by comparing findings generated across the three synthesis approaches. RESULTS: Twelve researchers and 11 service providers/policy partners-8 self-identified as Aboriginal and/or Torres Strait Islander-participated in two facilitated workshops (totalling 4 h). Workshop activities engaged participants in reviewing publication summaries, identifying key findings, and evoked review, discussion and refinement. The process explicitly linked experiential knowledge to citations of academic research, clearly connecting the two knowledge types. In comparing the findings generated across all three methods we found mostly consistencies; the few discrepancies did not contradict but gave deeper insights into statements created by the other methods. The participatory synthesis generated the most, detailed, and unique findings, and contextual insights about the relevance of the key messages for practice. CONCLUSION: The participatory synthesis engaged stakeholders with diverse backgrounds and skillsets in synthesising a large body of evidence in a relatively short time. The participatory approach produced findings comparable to traditional synthesis methods while extending knowledge and identifying lessons most relevant for the participants who, ultimately, are the end users of the research. This process will interest other large-scale research collaborations seeking to engage stakeholders in evidence synthesis.

Disability and loneliness in the United Kingdom: cross-sectional and longitudinal analyses of trends and transitions.

BACKGROUND: Loneliness can have a detrimental impact on health, yet little is known about the association between disability and loneliness. METHODS: Secondary analysis of three waves of data collected between 2017 and 2020 by the UK's annual household panel study, Understanding Society. Direct age-standardisation was used to compare the prevalence of loneliness at each wave and the persistence of loneliness across all three waves for participants with/without disabilities aged 16-65 years. Transitional probabilities for the stability of loneliness, the stability of non-loneliness, the onset of loneliness and the offset of loneliness between consecutive waves were also estimated. RESULTS: At each wave, the prevalence of loneliness was significantly higher among respondents with disabilities than respondents without disabilities; these inequalities persisted with no evidence of change over time. The prevalence of persistent loneliness was 46% for respondents with disabilities compared with 22% for respondents without disabilities. Risk factors for the likelihood of persistent loneliness included disability, financial stress, not living as a couple, living in rented accommodation, being female and not being employed. The probability of the onset and stability of loneliness between successive waves were markedly higher for people with disabilities compared with people without disabilities. CONCLUSION: Adults with disabilities were more likely to experience loneliness, become lonely and remain lonely over time than their peers. Policies and interventions aimed at reducing loneliness should ensure that they are accessible and effective for people with disabilities. Further research is needed to explore the health outcomes of persistent loneliness among people with/without disabilities.

Health and wellbeing outcomes associated with loneliness for people with disability: a scoping review.

BACKGROUND: Loneliness is a significant public health concern due to its detrimental impact on health and wellbeing. Despite people with disability reporting higher levels of loneliness than the general population, there has been little research into how this is affecting their health and wellbeing. In light of this, the aim of our study was to scope both the existing evidence about the health and wellbeing outcomes associated with loneliness for people with disability, as well as the conceptual frameworks and measures utilised in this field of research. METHODS: To conduct this scoping review, we followed the methodology outlined by JBI and searched MEDLINE, Scopus, Informit, Embase, and Web of Science for peer-reviewed, English-language articles published between 1 January 2000 and 8 February 2023. Two independent reviewers completed screening, full-text review and data extraction, with consensus sought at each stage. Data were analysed using content analysis and presented both numerically and narratively. RESULTS: Out of the initial 1602 publications identified in the scoping review, only nine were included after duplicate removal, title and abstract screening, and full-text review. This limited number of studies, with the earliest study one published in 2015, represents a key finding. Eight of the nine studies were quantitative, and all were conducted in high income countries. Most of these studies utilised a version of the University of Los Angles Loneliness Scale to measure loneliness and addressed specific impairment groups. Notably, most of the studies identified associations between loneliness and health and wellbeing outcomes for people with disability. CONCLUSIONS: This scoping review highlights the current scarcity of studies examining the effect that loneliness has on the health and wellbeing outcomes of people with disability. As most of the reviewed studies relied on loneliness measures designed for individuals without disability, they potentially overlook the unique life experiences of people with disability. Given that loneliness is an international public health concern, it is imperative that people with disability are not left behind or overlooked in efforts to address the impact of loneliness on health and wellbeing.

Determinants of access to general practice in a shared care model for people living with HIV: a qualitive study of patients' perspectives in an Australian rural community.

BACKGROUND: Improved management of human immunodeficiency virus (HIV) has resulted in improved life expectancy for people living with HIV and an ageing population with a significant comorbidity burden. Shared care models, involving the co-ordinated liaison between general practitioners and specialist physicians, have been advocated for in Australia to provide comprehensive care. People living with HIV in rural areas have reduced access to general practice and therefore shared care. This study explores the perspectives of people living with HIV on the barriers and enablers to accessing shared care in an Australian rural setting. METHODS: In this qualitative study, semi-structured interviews were conducted with adults living with HIV who either resided in or accessed care in a rural area of Australia. Interviews were conducted via video conferencing, phone or face-to-face. Transcripts were imported into NVivo, coded and analysed in alignment with a conceptual framework of healthcare access defined by Levesque and colleagues. RESULTS: Thirteen interviews were conducted in total. Participants' narratives demonstrated the substantial influence of accessibility to general practice on their ability to engage in effective shared care. Challenges included the perception that general practitioners would not provide additive value to participants' care, which restricted the ability to both seek and engage in the shared care model. Healthcare beliefs, expectations and experiences with stigma led participants to prioritise the perceived interpersonal qualities of specialist care above a shared care system. Access to shared care was facilitated by continuity of care in general practice but logistical factors such as affordability, transport and availability impacted the ability to access regular high-quality healthcare. CONCLUSIONS: Navigating patient priorities and anticipated stigma in general practice within the resource limitations of rural healthcare were barriers to effective shared care. General practitioners' ability to build rapport and long-term relationships with participants was instrumental in the perception of valuable care. Strategies are required to secure continuity of care with interpersonally skilled general practitioners to ensure provision of quality primary care for people living with HIV, which can be supported by specialist physicians in a shared care model.

Volunteering as prosocial behaviour by medical students following a flooding disaster and impacts on their mental health: A mixed-methods study.

BACKGROUND: Volunteering is a form of prosocial behaviour that has a been recognised as having positive benefits for medical students. However, there is a lack of research on what influences students to volunteer during and after weather-related disasters. Our study (1) explores factors related to medical students' willingness and readiness to volunteer, and (2) describes mental health impacts of the flood events on students. METHODS: We conducted a mixed-methods study of medical students on rural clinical placements in a regional area of Australia, 2 to 6 weeks after two major flooding events in 2022. Data were collected through survey and focus groups. Summary statistics were generated from the survey data, and Fisher's exact test was used to determine associations between student experience of the flood and self-rated well-being. Qualitative data were deductively analysed using Byrne and colleagues' theory of prosocial behaviour during an emergency. RESULTS: The 36 students who participated in focus groups (including the 34 who completed the survey) (response rates 84% and 79%, respectively) demonstrated high levels of prosocial behaviours and were willing to volunteer. A sense of moral obligation was the primary reason for volunteering, whereas concerns for their physical and psychological safety, and missing key aspects of their training, were the strongest reasons for not continuing to volunteer. Students reported personal stress, anxiety and trauma during this period, with significant associations between self-rated impacts on their well-being and feelings of being terrified, helpless and hopeless during the flooding events and of still being distressed weeks later (p < .05). CONCLUSIONS: This study expands on prosocial behaviour theory by applying Byrne and colleagues elaborated model in the context of medical student volunteering during the 2022 major flooding events in Australia. Modifiable barriers to prosocial behaviour are identified along with proposed strategies to address these barriers.

Patterns of collaboration and knowledge generated by an Australian rural research centre over 20 years: a co-authorship network analysis.

BACKGROUND: People living in rural areas have poorer health than their urban counterparts. Although rural health research centres have been promoted as vehicles for improving rural health by contributing evidence to address rural health disadvantage and building research capacity, their characteristics and evolution are poorly understood. Collaboration is known to have an important positive influence on research outputs and research quality. In this study we examine publication outputs from an Australian rural research centre to evaluate how researchers have engaged in research collaboration over a two-decade period. METHODS: A retrospective longitudinal study of publications in peer-reviewed journals from a rural research centre-University Centre for Rural Health (UCRH) -between January 2002 and December 2021. Organisational co-author networks across four periods (2002-2006; 2007-2011; 2012-2016; 2017-2021) were constructed based on author organisational affiliations and examined using social network analysis methods. Descriptive characteristics included organisation types, study design, region of study focus, thematic research trends, Aboriginal and Torres Strait Islander and female authorship, and journal characteristics. RESULTS: We identified 577 publications with 130 different UCRH-affiliated authors. Publications and the co-author network increased in number and diversity over each period, with an acceleration and a consolidation of the network in the final period. Over time there was an increase in publications related to Aboriginal and Torres Strait Islander health, coupled with an increase in Aboriginal and Torres Strait Islander authorship and collaborations with Aboriginal and Torres Strait Islander organisations; rise in female senior authorship and publication in quartile 1 journals. About two-thirds of publications make no reference to regional or remote populations. CONCLUSION: Collaboration in publications increased, expanded, and consolidated, which coincided with an increase in the number and diversity of both co-authoring organisations and UCRH-affiliated authors in the final period. The findings highlight the value of collaborations (including urban and international) in building and strengthening rural health research capacity. With increased capacity and consolidation of the network it is now imperative that research becomes more focussed on understanding and addressing rural health inequities.

Developing self-report disability questions for a voluntary patient registration form for general practice in Australia.

OBJECTIVE: This article reports on research undertaken to develop self-report disability questions for a patient registration form that may be implemented in general practices across Australia as part of a voluntary patient registration program. METHODS: There were four research components: rapid review of approaches for capturing disability information; expert informant interviews (n=19); stakeholder consultation via virtual focus groups (n=65); and online survey (n=35). Findings from each component informed development of materials for subsequent components in an iterative research process. RESULTS: Three disability questions were developed: two alternative questions for identifying disability, conceptually aligned with the operational definition of disability in Australia's national disability survey; one question to determine the patient's disability group/s. CONCLUSIONS: Knowledge and perspectives from a variety of sources informed the development of self-report questions to identify patients with disability. Implementing these questions represents an opportunity to test new ways of capturing disability information suited to mainstream service provision contexts. It will be essential to evaluate the quality of the data produced during the initial period of implementation. IMPLICATIONS FOR PUBLIC HEALTH: The collection of self-report patient disability information within general practice, using standard and conceptually-sound questions, has the potential to support improved provision of health care to patients with disability.

A call to action for more disability-inclusive health policy and systems research.

To date, the exclusion of people with disability participating in research has limited the evidence base informing health system strengthening policy and practice more generally, and addressing disability-related inequalities in access to health services and better health outcomes more particularly. Given that more than 1 billion people, or 16% of the world's population, have a disability, we may fail to respond to the needs of a large proportion of the population unless we are purposeful with inclusion. Our research in this area indicates that online qualitative methods can be effective in engaging under-represented groups and are essential to ensure their input into health policy and systems research. This has important implications for researchers whose responsibility it is to make all health research disability inclusive, for ethical and methodological reasons, so they do not perpetuate the under-representation of people with disability in health policy and systems research. Our paper puts forward several recommendations to facilitate more people with disability participating in health policy and systems research. By critically reflecting on a health system strengthening research project, in which we purposefully aimed to support the participation of people with disability, we identify lessons learnt and issues to consider when planning and conducting accessible research. We also propose a set of actions for moving the agenda forward.

A qualitative exploration of health student perspectives of rural and remote placements during the early stages of the COVID-19 pandemic.

OBJECTIVE: To explore health student perspectives of rural and remote placements during the early stages of the COVID-19 pandemic. SETTING: Australia. PARTICIPANTS: Allied health, nursing and medical students with a planned rural or remote placement between February and October 2020. DESIGN: Semi-structured interviews (n = 29) with data thematically analysed. RESULTS: Five main themes emerged from student experiences: (1) 'Do we go? Don't we go? Like how much risk is involved?' related to student concerns regarding acquiring and transmitting COVID-19 on placement; (2) 'We are sort of just standing at the door trying to watch' encompassed student perceptions of missed clinical learning opportunities in response to health and safety measures related to COVID-19; (3) 'I, as a student, sort of fell under the radar' related to student perceptions of suboptimal supervision; (4) 'It was a bit more difficult to engage with that wider community' recognised student feelings of social disconnection and their lack of opportunity for community immersion; and (5) 'We felt like we got something that is more than we expected' emerged from student reflections on training during the pandemic and alternative placements (virtual, simulated and non-clinical) that exceeded expectations for learning. CONCLUSIONS: Although most students were willing and able to undertake their rural or remote placement in some form during the early stages of the pandemic and identified unanticipated learning benefits, students recognised lost opportunities to build clinical skills, become culturally aware and connect with rural communities. It remains unknown how these rural and remote placement experiences will impact rural intention and in turn, rural workforce development.

Network evaluation of an innovation platform in continuous quality improvement in Australian Indigenous primary healthcare.

BACKGROUND: From 2014 to 2019, the Centre for Research Excellence in Integrated Quality Improvement (CRE-IQI) was evaluated as an innovation platform focusing on continuous quality improvement in Indigenous Australian primary healthcare. Although social network analysis (SNA) is a recognized method for evaluating the functioning, collaboration and effectiveness of innovation platforms, applied research is limited. This study applies SNA to evaluate the CRE-IQI's functioning as an innovation platform. METHODS: Two surveys (2017, 2019) were conducted using social survey and network methods. Survey items covered respondent characteristics, their perceptions of the CRE-IQI's performance, and its impact and sociometric relationships. Members' relationship information was captured for the CRE-IQI at three time points, namely start (retrospectively), midpoint and final year, on three network types (knew, shared information, collaborated). SNA software was used to compute standard network metrics including diameter, density and centrality, and to develop visualizations. Survey and network results were addressed in a workshop held by members to develop improvement strategies. RESULTS: The response rate was 80% in 2017 and 65% in 2019 (n = 49 and 47, respectively). Between 2017 and 2019, respondents' mean ratings of the CRE-IQI's functioning and achievements in meeting its goals were sustained. They perceived the CRE-IQI as multidisciplinary, having effective management and governance, and incorporating Indigenous research leadership, representation and ways of working. Respondents recognized high levels of trust amongst members, rated "good communication and coordination with participants" highly, and "facilitating collaboration" as the CRE's most strongly recognized achievement. In collaboration and information-sharing networks, average path length remained low in 2017 and 2019, indicating good small-world network properties for relaying information. On average, respondents shared information and collaborated with more CRE members in 2017 than 2019. However, in both 2017 and 2019 there were new collaborations and information-sharing outside of direct collaborations. CRE-IQI outcomes included: evidence generation; knowledge transfer and skills development in quality improvement; research capacity-building, career development; mentoring; grant support; development of new projects; health service support; and policy impact. CONCLUSIONS: This study shows the utility of network analysis in evaluating the functioning, and collaboration, at the individual, organizational and health system levels, of an innovation platform, and adds to our understanding of factors enabling successful innovation platforms.

Access to general practice for people with intellectual disability in Australia: a systematic scoping review.

BACKGROUND: People with intellectual disability experience inadequate access to general practice and poorer health outcomes than the general population. While some access barriers have been identified for this population, these studies have often used narrow definitions of access, which may not encompass the multiple dimensions that influence access to general practice. To address this gap, we conducted a scoping review to identify factors impacting access to general practice for people with intellectual disability in Australia, using a holistic framework of access conceptualised by Levesque and colleagues. METHODS: This scoping review followed Joanna Briggs Institute methodology and was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. Medline (Ovid), Scopus, CINAHL, Informit and PsycINFO databases were searched. Screening, full-text review and data extraction were completed by two independent reviewers, with consensus reached at each stage of the study. Data were extracted, coded and synthesised through deductive qualitative analysis - using the five corresponding conceptual dimensions within Levesque and colleagues' theoretical framework of access, which incorporate both supply-side features of health systems and services, and demand-side characteristics of consumers and populations. RESULTS: The search identified 1364 publications. After duplicate removal, title and abstract screening and full-text review, 44 publications were included. Supply-side factors were more commonly reported than demand-side factors, with the following issues frequently identified as impacting access to general practice: limited general practitioner education about, and/or experience of, people with intellectual disability; communication difficulties; and inadequate continuity of care. Less frequently included were factors such as the health literacy levels, promotion of general practice services and availability of complete medical records. CONCLUSIONS: This is the first scoping review to assess access barriers for people with intellectual disability using a comprehensive conceptualisation of access. The findings highlight the need for increased efforts to address demand-side dimensions of access to general practice and offer a basis for a balanced portfolio of strategies that can support recent policy initiatives to enhance access to care for people with intellectual disability.

Exposure to risk and experiences of river flooding for people with disability and carers in rural Australia: a cross-sectional survey.

OBJECTIVES: In this paper, we explore the exposure to risk and experiences of people with disability and carers during a flooding event and the subsequent mental health impacts. DESIGN: A cross-sectional survey between September and November 2017. Binary logistic regression models were used to investigate associations between the mental health of people with disability and carers and their exposure to the flood. Inductive content analysis was used to analyse qualitative data. SETTING: Flood-affected communities in the rural area of Northern Rivers, New South Wales, Australia, 6 months after river flooding in 2017. PARTICIPANTS: People over 16 years and a resident in the Northern Rivers at the time of the flood were invited to participate. Using a purposive, snowballing sampling technique participants were drawn from a wide range of socioeconomic backgrounds and had experienced different degrees of flood exposure. RESULTS: Of 2252 respondents, there were 164 people with disability and 91 carers. Both groups had increased odds of having their home flooded (people with a disability: OR 2.41 95% CI 1.71 to 3.39; carers: OR 1.76 95% CI 1.10 to 2.84). On evacuation, respondents reported inaccessible, conflicting and confusing information regarding flood warnings. Essential services such as healthcare and social services were disrupted (people with a disability: OR 3.98 95% CI 2.82 to 5.60; carers 2.17 95% CI 1.33 to 3.54) and access to safe and mould free housing post flood event was limited. After taking sociodemographic factors into account, respondents with a disability and carers had greater odds of probable post-traumatic stress disorder compared with other respondents (people with a disability: 3.32 95% CI 2.22 to 4.96; carers: 1.87 95% CI 1.10 to 3.19). CONCLUSION: Our findings show the profound impact and systemic neglect experienced by people with disability and carers during and after the 2017 flood event in the Northern Rivers. As people with disability will take longer to recover, they will require longer-term tailored supports and purposeful inclusion in flood preparedness and recovery efforts.