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The perspectives of Aboriginal patients and their health care providers on improving the quality of hemodialysis services: a qualitative study.

ABSTRACT: Chronic kidney disease has a higher prevalence in Indigenous populations globally. The incidence of end-stage kidney disease in Australian Aboriginal people is eight times higher than non-Aboriginal Australians. Providing services to rural and remote Aboriginal people with chronic disease is challenging because of access and cultural differences. This study aims to describe and analyze the perspectives of Aboriginal patients' and health care providers' experience of renal services, to inform service improvement for rural Aboriginal hemodialysis patients. We conducted a thematic analysis of interviews with Aboriginal patients (n?=?18) receiving hemodialysis in rural Australia and health care providers involved in their care (n?=?29). An overarching theme of avoiding the "costly" crisis encompassed four subthemes: (1) Engaging patients earlier (prevent late diagnosis, slow disease progression); (2) flexible family-focused care (early engagement of family, flexibility to facilitate family and cultural obligations); (3) managing fear of mainstream services (originating in family dialysis experiences and previous racism when engaging with government organizations); (4) service provision shaped by culture (increased home dialysis, Aboriginal support and Aboriginal-led cultural education). Patients and health care providers believe service redesign is required to meet the needs of Aboriginal hemodialysis patients. Participants identified early screening and improving the relationship of Aboriginal people with health systems would reduce crisis entry to hemodialysis. These strategies alongside improving the cultural competence of staff would reduce patients' fear of mainstream services, decrease the current emotional and family costs of care, and increase efficiency of health expenditure on a challenging and increasingly unsustainable treatment system.

SUBMITTER: Rix EF

PROVIDER: S-EPMC4309474 | biostudies-literature | 2015 Jan

REPOSITORIES: biostudies-literature

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The perspectives of Aboriginal patients and their health care providers on improving the quality of hemodialysis services: a qualitative study.

Rix Elizabeth F EF Barclay Lesley L Stirling Janelle J Tong Allison A Wilson Shawn S

Hemodialysis international. International Symposium on Home Hemodialysis 20140723 1

Chronic kidney disease has a higher prevalence in Indigenous populations globally. The incidence of end-stage kidney disease in Australian Aboriginal people is eight times higher than non-Aboriginal Australians. Providing services to rural and remote Aboriginal people with chronic disease is challenging because of access and cultural differences. This study aims to describe and analyze the perspectives of Aboriginal patients' and health care providers' experience of renal services, to inform ser ...[more]

PMID: 25056441

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Project description:ObjectiveProviding services to rural dwelling minority cultural groups with serious chronic disease is challenging due to access to care and cultural differences. This study aimed to describe service providers' perspectives on health services delivery for Aboriginal people receiving haemodialysis for end-stage kidney disease in rural Australia.DesignSemistructured interviews, thematic analysisSettingA health district in rural New South Wales, AustraliaParticipantsUsing purposive sampling, 29 renal and allied service providers were recruited, including nephrologists, renal nurses, community nurses, Aboriginal health workers, social workers and managers. Six were Aboriginal and 23 non-Aboriginal.ResultsImproving cultural understanding within the healthcare system was central to five themes identified: rigidity of service design (outreach, inevitable home treatment failures, pressure of system overload, limited efficacy of cultural awareness training and conflicting priorities in acute care); responding to social complexities (respecting but challenged by family obligations, assumptions about socioeconomic status and individualised care); promoting empowerment, trust and rapport (bridging gaps in cultural understanding, acknowledging the relationship between land, people and environment, and being time poor); distress at late diagnosis (lost opportunities and prioritise prevention); and contending with discrimination and racism (inherent judgement of lifestyle choices, inadequate cultural awareness, pervasive multilevel institutionalised racism and managing patient distrust).ConclusionsService providers believe current services are not designed to address cultural needs and Aboriginality, and that caring for Aboriginal patients receiving haemodialysis should be family focused and culturally safer. An Aboriginal-specific predialysis pathway, building staff cultural awareness and enhancing cultural safety within hospitals are the measures recommended. Increasing patient support for home haemodialysis may improve health and the quality of care outcomes.

Project description:BackgroundAboriginal and/or Torres Strait Islander people experience dementia at a rate three to five times higher than the general Australian population. Aboriginal Community Controlled Health Services (ACCHSs) have a critical role to play in recognising symptoms of cognitive impairment, facilitating timely diagnosis of dementia, and managing the impacts of dementia. Little is known about the barriers and enablers to Aboriginal people receiving a timely dementia diagnosis and appropriate care once diagnosed. This study aims to explore, from the perspective of healthcare providers in the ACCHS sector across urban, regional and remote communities, the barriers and enablers to the provision of dementia diagnosis and care.MethodsA qualitative study involving semi-structured interviews with staff members working in the ACCHS sector. Aboriginal Health Workers, General Practitioners, nurses, practice or program managers, and Chief Executive Officers were eligible to participate. Consenting ACCHS staff completed a telephone interview administered by a trained interviewer. Interviews were audio-recorded, transcribed, and analysed using qualitative content analysis.ResultsSixteen staff from 10 ACCHSs participated. Most participants perceived their communities had a limited understanding of dementia. Symptoms of dementia were usually noticed by the GP or another healthcare worker at the ACCHS who had an ongoing relationship with the person. Most participants reported that their service had established referral pathways with either hospital-based geriatricians, geriatricians located with aged care assessment teams, or specialists who visited communities periodically. Key enablers to high quality dementia care included the use of routine health assessments as a mechanism for diagnosis; relationships within communities to support diagnosis and care; community and family relationships; comprehensive and holistic care models; and the use of tailored visual resources to support care. Key barriers to high quality care included: denial and stigma; dementia being perceived as a low priority health condition; limited community awareness and understanding of dementia; lack of staff education and training about dementia; and numerous gaps in service delivery.ConclusionsSubstantially increased investments in supporting best-practice diagnosis and management of dementia in Aboriginal communities are required. ACCHSs have key strengths that should be drawn upon in developing solutions to identified barriers to care.

Project description:BackgroundAchieving quality improvement in primary care is a challenge worldwide, with substantial gaps between best practice and actual practice. Within the context of Australia, Aboriginal and Torres Strait Primary Health Care (PHC) services have great variation across settings, structures and context. Research has highlighted how these contextual differences can critically influence the success of Quality Improvement (QI) interventions and outcomes. Less understood is the interaction between local context and other factors, which may impact the implementation of QI interventions. This paper aims to explore the strengths and challenges in QI for Aboriginal and Torres Strait Islander PHC services and their priorities for improvement.MethodsA multiple case study design was adopted, working with eight Aboriginal and Torres Strait Islander PHC services in Northern Territory, Queensland and Western Australia. Data were collected via a health service survey, semi-structured interviews with health service staff and service users and researcher observations, to explore QI and perceptions of care quality at the service level. Data reported here were analysed using an iterative thematic technique, within-case and across-case.ResultsA total of 135 interviews were conducted with health service staff, service users and community members. Participants emphasised the centrality of resilient community, committed workforce and valued Aboriginal and Torres Strait Islander team members in delivering care. A shared purpose around improving the health of community was a significant driver. Key challenges included staff turnover and shortages, a complex and overwhelming acute and chronic care workload, building relationships and trust between health services and the community. Service-suggested priority areas for improvement were categorised into five themes: i) cultural safety (community driving health and planning for culturally safe services); ii) community engagement (through clinical activities in the community); iii) shared ownership and a team approach around QI; iv) strengthening systems and consistent ways of doing things in the health service; and v) strengthening local workforce (and resources for a culturally safe workforce).ConclusionsThese findings advance understandings of relational, community and cultural factors which are identified priorities for the delivery of quality care in Aboriginal and Torres Strait Islander PHC services across varied contexts.

Project description:BACKGROUND:Young people living in remote Australian Aboriginal communities experience high rates of sexually transmissible infections (STIs). STRIVE (STIs in Remote communities, ImproVed and Enhanced primary care) was a cluster randomised control trial of a sexual health continuous quality improvement (CQI) program. As part of the trial, qualitative research was conducted to explore staff perceptions of the CQI components, their normalisation and integration into routine practice, and the factors which influenced these processes. METHODS:In-depth semi-structured interviews were conducted with 41 clinical staff at 22 remote community clinics during 2011-2013. Normalisation process theory was used to frame the analysis of interview data and to provide insights into enablers and barriers to the integration and normalisation of the CQI program and its six specific components. RESULTS:Of the CQI components, participants reported that the clinical data reports had the highest degree of integration and normalisation. Action plan setting, the Systems Assessment Tool, and the STRIVE coordinator role, were perceived as adding value to the program, but were less readily integrated or normalised. The remaining two components (dedicated funding for health promotion and service incentive payments) were seen as least relevant. Our analysis also highlighted factors which enabled greater integration of the CQI components. These included familiarity with CQI tools, increased accountability of health centre staff and the translation of the CQI program into guideline-driven care. The analysis also identified barriers, including high staff turnover, limited time involved in the program and competing clinical demands and programs. CONCLUSIONS:Across all of the CQI components, the clinical data reports had the highest degree of integration and normalisation. The action plans, systems assessment tool and the STRIVE coordinator role all complemented the data reports and allowed these components to be translated directly into clinical activity. To ensure their uptake, CQI programs must acknowledge local clinical guidelines, be compatible with translation into clinical activity and have managerial support. Sexual health CQI needs to align with other CQI activities, engage staff and promote accountability through the provision of clinic specific data and regular face-to-face meetings. TRIAL REGISTRATION:Australian and New Zealand Clinical Trials Registry ACTRN12610000358044 . Registered 6/05/2010. Prospectively Registered.

Project description:ObjectivesTo understand dementia care providers' perspectives on high-quality care for persons living with dementia (PLWD) in long-term care (LTC).DesignA qualitative study using a directed content analysis approach.Setting and participantsNine national LTC dementia care providers.MethodsWe facilitated 5 listening sessions centered around dementia care philosophies, models, and practices. Two researchers first mapped qualitative data to the Holistic Approach to Transformational Change (HATCh) model for dementia care using a directed content analysis approach. They then identified themes and subthemes emerging from the data using a conventional analysis approach. They coded data iteratively and solicited input from 3 additional researchers to reach consensus where needed. Member checks were performed to ensure the trustworthiness of the data during 2 follow-up listening sessions.ResultsThe 9 participants described the importance of understanding the experiences of PLWDs in order to provide high-quality dementia care and to deliver such care with the residents and their preferences as the focus. They emphasized experiential education as essential for families and all staff, regardless of role. They noted the need to balance safety with resident choice, as well as the corresponding need for facility leadership and regulators to support such choices. The listening sessions revealed areas to foster person-centered care for PLWD, but also highlighted barriers to implementing this philosophy in LTC settings.Conclusions and implicationsEmergent themes included care practices that center on resident preferences and are supported by staff with the experiential education and communication skills necessary to relate to and support PLWD. These findings provide contextual information for researchers seeking to identify and test interventions that reflect LTC providers' priorities for PLWD and emphasize the need to align research priorities with provider priorities.

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The perspectives of Aboriginal patients and their health care providers on improving the quality of hemodialysis services: a qualitative study.

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The perspectives of Aboriginal patients and their health care providers on improving the quality of hemodialysis services: a qualitative study.

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