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Patient Perspectives of Living with Coeliac Disease and Accessing Dietetic Services in Rural Australia: A Qualitative Study.

ABSTRACT: Adapting to living with coeliac disease requires individuals to learn about and follow a strict gluten-free diet. Utilising a qualitative inductive approach, this study aimed to explore the perspectives of adults diagnosed with coeliac disease who have accessed dietetic services in a rural outpatient setting. A purposive sample of adults with coeliac disease who had accessed dietetic services from two rural dietetic outpatient clinics were recruited. Semi-structured interviews were conducted by telephone. Data were thematically analysed. Six participants were recruited and interviewed. Three key themes emerged: (i) optimising individualised support and services, (ii) adapting to a gluten-free diet in a rural context, and (iii) managing a gluten-free diet within the context of interpersonal relationships. Key issues identified in the rural context were access to specialist services and the increased cost of gluten-free food in more remote areas. The findings of this study have highlighted the difficulties associated with coeliac disease management and how dietetic consultation has the potential to influence confidence in management and improve lifestyle outcomes. Further qualitative research is required to expand on the findings of this study and inform future dietetic practice that meets the expectations and individual needs of people with coeliac disease in rural settings.

SUBMITTER: Lee R

PROVIDER: S-EPMC8234981 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:ObjectiveTo explore the experiences of cancer caregivers who live in rural Australia and travel to a metropolitan cancer health service to access cancer treatment.DesignA qualitative study using semistructured, audio-recorded interviews conducted between December 2017 and July 2018 with caregivers and social workers. Thematic analysis using interpretative descriptive techniques performed on textual interview data within a critical realist paradigm to develop understanding of rural caregivers' lived experiences.SettingParticipants were from rural areas attending a metropolitan cancer centre in Australia and social workers.Participants21 caregivers (16 female) of people with cancer living in rural Australia within a minimum distance of 100 km from the metropolitan cancer centre where they access treatment, and five social workers employed at a metropolitan cancer service with experience of working with rural patients and caregivers.ResultsThematic analysis developed two overarching themes: theme 1: caregiving in the rural setting describes the unique circumstance in which caregiving for a person with cancer takes place in the rural setting at considerable distance from the cancer service where the person receives treatment. This is explored in three categories: 'Rural community and culture', 'Life adjustments' and 'Available supports'. Theme 2: accessing metropolitan cancer services captures the multiplicity of tasks and challenges involved in organising and coordinating the journey to access cancer treatment in a metropolitan hospital, which is presented in the following categories: 'Travel', 'Accommodation' and 'Health system navigation'.ConclusionsCaregivers who live in rural areas face significant challenges when confronting geographic isolation between their rural home environment and the metropolitan setting, where the patient accessed cancer treatment. There is a need for healthcare services to identify this group to develop feasible and sustainable ways to provide interventions that have the best chance of assisting rural caregivers in supporting the patient while maintaining their own health and well-being.

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:IntroductionHealthcare inequalities and ethnicity are closely related. Evidence has demonstrated that patients from ethnic minority groups are more likely to report a long-term illness than their white counterparts; yet, in some cases, minority groups have reported poorer adherence to prescribed medicines and may be less likely to access medicine services. Knowledge of the barriers and facilitators that impact ethnic minority access to medicine services is required to ensure that services are fit for purpose to meet and support the needs of all.MethodsSemistructured interviews with healthcare professionals were conducted between October and December 2020, using telephone and video call-based software. Perspectives on barriers and facilitators were discussed. Interviews were audio-recorded and transcribed verbatim. Reflexive thematic analysis enabled the development of themes. QSR NVivo (Version 12) facilitated data management. Ethical approval was obtained from the Newcastle University Faculty of Medical Sciences Ethics Committee.ResultsEighteen healthcare professionals were interviewed across primary, secondary and tertiary care settings; their roles spanned medicine, pharmacy and dentistry. Three themes were developed from the data regarding the perceived barriers and facilitators affecting access to medicine services for ethnic minority patients. These centred around patient expectations of health services; appreciating cultural stigma and acceptance of certain health conditions; and individually addressing communication and language needs.ConclusionThis study provides much-needed evidence relating to the barriers and facilitators impacting minority ethnic communities when seeking medicine support. The results of this study have important implications for the delivery of person-centred care. Involving patients and practitioners in coproduction approaches could enable the design and delivery of culturally sensitive and accessible medicine services.Patient or public contributionThe Patient and Public Involvement and Engagement (PPIE) group at Newcastle University had extensive input in the design and concept of this study before the research was undertaken. Throughout the work, a patient champion (Harpreet Guraya) had input in the project by ensuring that the study was conducted, and the findings were reported, with cultural sensitivity.

Project description:ObjectiveTo explore the experiences of people living with long COVID and how they perceive the healthcare services available to them.DesignQualitative systematic review.Data sourcesElectronic literature searches of websites, bibliographic databases and discussion forums, including PubMed LitCovid, Proquest COVID, EPPI Centre living systematic map of evidence, medRxiv, bioRxiv, Medline, Psychinfo and Web of Science Core Collection were conducted to identify qualitative literature published in English up to 13 January 2021.Inclusion criteriaPapers reporting qualitative or mixed-methods studies that focused on the experiences of long COVID and/or perceptions of accessing healthcare by people with long COVID. Title/abstract and full-text screening were conducted by two reviewers independently, with conflicts resolved by discussion or a third reviewer.Quality appraisalTwo reviewers independently appraised included studies using the qualitative CASP (Critical Appraisal Skills Programme) checklist. Conflicts were resolved by discussion or a third reviewer.Data extraction and synthesisThematic synthesis, involving line-by-line reading, generation of concepts, descriptive and analytical themes, was conducted by the review team with regular discussion.ResultsFive studies published in 2020 met the inclusion criteria, two international surveys and three qualitative studies from the UK. Sample sizes varied from 24 (interview study) to 3762 (survey). Participants were predominantly young white females recruited from social media or online support groups. Three analytical themes were generated: (1) symptoms and self-directed management of long COVID; (2) emotional aspects of living with long COVID and (3) healthcare experiences associated with long COVID.ConclusionsPeople experience long COVID as a heterogeneous condition, with a variety of physical and emotional consequences. It appears that greater knowledge of long COVID is required by a number of stakeholders and that the design of emerging long COVID services or adaptation of existing services for long COVID patients should take account of patients' experiences in their design.

Project description:ImportancePatient-perceived barriers to hidradenitis suppurativa (HS) care are poorly understood. Understanding health care barriers is a critical first step toward improving care for this population.ObjectiveTo characterize the health care experiences of people living with HS, including perceived barriers and facilitators to health care access, and to elucidate potential associations among these barriers and facilitators, health care access, and disease activity.Design, setting, and participantsIn this qualitative study, an inductive thematic analysis was conducted on 45 in-depth, 60- to 90-minute semistructured interviews of 45 people with HS from diverse sociodemographic backgrounds that took place between March and April 2020. Individuals were eligible if they could speak English, were 18 years or older, and were diagnosed with HS. A diagnosis of HS was confirmed through physician diagnosis or through self-reported, affirmative response to the validated screening question, "Do you experience boils in your armpits or groin that recur at least every six months?"Main outcomes and measuresInterviews were audio recorded and transcribed verbatim. A modified grounded theory approach was used to develop the codebook, which investigators used for inductive thematic analysis.ResultsAmong the 45 participants included, the median (IQR) age was 37 (16) years, 33 (73%) were female, and 22 (49%) were White. There were 6 interrelated themes associated with participant-perceived barriers to accessing HS care: (1) bidirectional associations of disease activity and employment, (2) association of employment with health care coverage, (3) association of health care coverage with costs and perceived access to care, (4) association of costs with access to patient-centered care, (5) health care professional attitudes and knowledge influence patient-centered care and perceived access to care and disease activity, and (6) health system characteristics influence patient-centered care and associated costs, perceived access to care, and disease activity.Conclusions and relevanceThis qualitative study highlights themes that generate a conceptual model for understanding barriers that may act synergistically to limit health care access and influence disease activity. The disease activity of HS may be reduced when cycle elements are optimized. This study also highlights areas for future investigations and potential systems-level changes to improve access to patient-centered HS care.

Project description:BackgroundInadequate healthcare access and utilisation are implicated in the mental health burden experienced by those living in regional, rural, and remote Australia. Facilitators that better enable access and utilisation are also reported in the literature. To date, a synthesis on both the barriers and facilitators to accessing and utilising mental health services within the rural Australian context has not been undertaken. This scoping review aims to (1) synthesise the barriers and facilitators to accessing and utilising mental health services in regional, rural, and remote Australia, as identified using the Modified Monash Model; and (2) better understand the relationship between barriers and facilitators and their geographical context.MethodsA systematic search of Medline Complete, EMBASE, PsycINFO, Scopus, and CINAHL was undertaken to identify peer-reviewed literature. Grey literature was collated from relevant websites. Study characteristics, including barriers and facilitators, and location were extracted. A descriptive synthesis of results was conducted.ResultsFifty-three articles were included in this scoping review. Prominent barriers to access and utilisation included: limited resources; system complexity and navigation; attitudinal and social matters; technological limitations; distance to services; insufficient culturally-sensitive practice; and lack of awareness. Facilitators included person-centred and collaborative care; technological facilitation; environment and ease of access; community supports; mental health literacy and culturally-sensitive practice. The variability of the included studies precluded the geographical analysis from being completed.ConclusionBoth healthcare providers and service users considered a number of barriers and facilitators to mental health service access and utilisation in the regional, rural, and remote Australian context. Barriers and facilitators should be considered when re-designing services, particularly in light of the findings and recommendations from the Royal Commission into Victoria's Mental Health System, which may be relevant to other areas of Australia. Additional research generated from rural Australia is needed to better understand the geographical context in which specific barriers and facilitators occur.

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Patient Perspectives of Living with Coeliac Disease and Accessing Dietetic Services in Rural Australia: A Qualitative Study.

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