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.

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.

Collaboration and knowledge generation in an 18-year quality improvement research programme in Australian Indigenous primary healthcare: a coauthorship network analysis.

OBJECTIVES: Though multidisciplinary research networks support the practice and effectiveness of continuous quality improvement (CQI) programmes, their characteristics and development are poorly understood. In this study, we examine publication outputs from a research network in Australian Indigenous primary healthcare (PHC) to assess to what extent the research network changed over time. SETTING: Australian CQI research network in Indigenous PHC from 2002 to 2019. PARTICIPANTS: Authors from peer-reviewed journal articles and books published by the network. DESIGN: Coauthor networks across four phases of the network (2002-2004; 2005-2009; 2010-2014; 2015-2019) were constructed based on author affiliations and examined using social network analysis methods. Descriptive characteristics included organisation types, Indigenous representation, gender, student authorship and thematic research trends. RESULTS: We identified 128 publications written by 308 individual authors from 79 different organisations. Publications increased in number and diversity over each funding phase. During the final phase, publication outputs accelerated for organisations, students, project officers, Indigenous and female authors. Over time there was also a shift in research themes to encompass new clinical areas and social, environmental or behavioural determinants of health. Average degree (8.1), clustering (0.81) and diameter (3) indicated a well-connected network, with a core-periphery structure in each phase (p≤0.03) rather than a single central organisation (degree centralisation=0.55-0.65). Academic organisations dominated the core structure in all funding phases. CONCLUSION: Collaboration in publications increased with network consolidation and expansion. Increased productivity was associated with increased authorship diversity and a decentralised network, suggesting these may be important factors in enhancing research impact and advancing the knowledge and practice of CQI in PHC. Publication diversity and growth occurred mainly in the fourth phase, suggesting long-term relationship building among diverse partners is required to facilitate participatory research in CQI. Despite improvements, further work is needed to address inequities in female authorship and Indigenous authorship.

Principles guiding ethical research in a collaboration to strengthen Indigenous primary healthcare in Australia: learning from experience.

INTRODUCTION: Indigenous communities worldwide are leading calls for all research involving Indigenous people to be underpinned by values and principles articulated by them. Many researchers are explicitly adopting these principles to guide what, where, how and when research is undertaken with Indigenous people. With critical reflection to support the implementation of such principles largely absent from published literature, this paper explores both the implementation of, and the outcomes from a set of guiding principles used in a large-scale Australian research collaboration to improve Indigenous health. METHODS: In this inductive qualitative study, we adopted a principles-focused evaluation approach. Based on interviews with 35 actors in the collaboration and a review of project documents, we generated themes that were then iteratively discussed, refined and categorised into (1) 'strategies'-activities by which implementation of our guiding principles were recognised; (2) 'outcomes'-results seen from implementing the principles and (3) 'conditions'-aspects of the context that facilitated and constrained implementation of the principles. RESULTS: Respondents found it difficult to articulate how the guiding principles were actually implemented, and frequently referred to them as part of the fabric of the collaboration. They viewed the set of principles as mutually reinforcing, and as providing a rudder for navigating complexity and conflict. Implementation of the principles occurred through five strategies-honouring the principles; being dynamic and adaptable; sharing and dispersing leadership; collaborating purposefully and adopting a culture of mutual learning. Outcomes included increased Indigenous leadership and participation; the ability to attract principled and values-driven researchers and stakeholders, and the development of trusting and respectful relationships. The conditions that facilitated the implementation of the principles were collaborating over time; an increasing number of Indigenous researchers and taking an 'innovation platform' approach. CONCLUSION: Our findings show that principles guiding collaborations are valuable in providing a focus, direction and a way of working together when they are collaboratively developed, hold genuine meaning for all members and are implemented within a culture of continuous critical reflection, learning and adaptation, with ongoing reinterpretation of the principles over time.

Impact of policy support on uptake of evidence-based continuous quality improvement activities and the quality of care for Indigenous Australians: a comparative case study.

OBJECTIVES: To examine the impact of state/territory policy support on (1) uptake of evidence-based continuous quality improvement (CQI) activities and (2) quality of care for Indigenous Australians. DESIGN: Mixed-method comparative case study methodology, drawing on quality-of-care audit data, documentary evidence of policies and strategies and the experience and insights of stakeholders involved in relevant CQI programmes. We use multilevel linear regression to analyse jurisdictional differences in quality of care. SETTING: Indigenous primary healthcare services across five states/territories of Australia. PARTICIPANTS: 175 Indigenous primary healthcare services. INTERVENTIONS: A range of national and state/territory policy and infrastructure initiatives to support CQI, including support for applied research. PRIMARY AND SECONDARY OUTCOME MEASURES: (i) Trends in the consistent uptake of evidence-based CQI tools available through a research-based CQI initiative (the Audit and Best Practice in Chronic Disease programme) and (ii) quality of care (as reflected in adherence to best practice guidelines). RESULTS: Progressive uptake of evidence-based CQI activities and steady improvements or maintenance of high-quality care occurred where there was long-term policy and infrastructure support for CQI. Where support was provided but not sustained there was a rapid rise and subsequent fall in relevant CQI activities. CONCLUSIONS: Health authorities should ensure consistent and sustained policy and infrastructure support for CQI to enable wide-scale and ongoing improvement in quality of care and, subsequently, health outcomes. It is not sufficient for improvement initiatives to rely on local service managers and clinicians, as their efforts are strongly mediated by higher system-level influences.