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INTRODUCTION: Community-driven research in primary healthcare (PHC) may reduce the chronic disease burden in Indigenous peoples. This systematic review assessed the cultural safety of reports of research on PHC use by Indigenous peoples from four countries with similar colonial histories. METHODS: Medline, CINAHL and Embase were all systematically searched from 1st January 2002 to 4th April 2023. Papers were included if they were original studies, published in English and included data (quantitative, qualitative and/or mixed methods) on primary healthcare use for chronic disease (chronic kidney disease, cardiovascular disease and/or diabetes mellitus) by Indigenous Peoples from Western colonial countries. Study screening and data extraction were undertaken independently by two authors, at least one of whom was Indigenous. The baseline characteristics of the papers were analyzed using descriptive statistics. Aspects of cultural safety of the research papers were assessed using two quality appraisal tools: the CONSIDER tool and the CREATE tool (subset analysis). This systematic review was conducted in accordance with the Assessing the Methodological Quality of Systematic Reviews (AMSTAR) tool. RESULTS: We identified 35 papers from Australia, New Zealand, Canada, and the United States. Most papers were quantitative (n = 21) and included data on 42,438 people. Cultural safety across the included papers varied significantly with gaps in adequate reporting of research partnerships, provision of clear collective consent from participants and Indigenous research governance throughout the research process, particularly in dissemination. The majority of the papers (94%, 33/35) stated that research aims emerged from communities or empirical evidence. We also found that 71.4% (25/35) of papers reported of using strengths-based approaches by considering the impacts of colonization on reduced primary healthcare access. CONCLUSION: Research on Indigenous PHC use should adopt more culturally safe ways of providing care and producing research outputs which are relevant to community needs by privileging Indigenous voices throughout the research process including dissemination. Indigenous stakeholders should participate more formally and explicitly throughout the process to guide research practices, inclusive of Indigenous values and community needs.
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Povos Indígenas , Atenção Primária à Saúde , Humanos , Canadá , Serviços de Saúde do Indígena , Austrália , Nova Zelândia , Estados Unidos , Competência CulturalRESUMO
RATIONALE & OBJECTIVE: Indigenous People suffer a high burden of kidney disease. Those receiving maintenance dialysis have worse outcomes compared with similarly treated non-Indigenous patients. We characterized the experiences of Indigenous patients receiving dialysis in British-colonized countries to gain insights into which aspects of kidney care may benefit from improvement. STUDY DESIGN: A systematic review of published qualitative interview studies. SETTING & STUDY POPULATIONS: Indigenous Peoples aged 18 years and over, receiving hemodialysis or peritoneal dialysis in British-colonized countries. SELECTION CRITERIA FOR STUDIES: Search terms for Indigenous Peoples, dialysis, and qualitative research were entered into Medline, Embase, PsycINFO, and CINAHL and searched from inception to January 5, 2023. DATA EXTRACTION: Characteristics of each study were extracted into Microsoft Excel for quality assessment. ANALYTICAL APPROACH: Data were analyzed using thematic synthesis. RESULTS: The analysis included 28 studies involving 471 participants from Australia, New Zealand, Canada, and the United States. We identified four themes: centrality of family and culture (continuing dialysis for family, gaining autonomy through shared involvement, balancing primary responsibility to care for family); marginalization due to structural and social inequities (falling through gaps in primary care intensifying shock, discriminated against and judged by specialists, alienated and fearful of hospitals, overwhelmed by travel, financial and regimental burdens); vulnerability in accessing health care (need for culturally responsive care, lack of language interpreters, without agency in decision-making, comorbidities compounding complexity of self-management); and distress from separation from community (disenfranchisement and sorrow when away for dialysis, inability to perpetuate cultural continuity, seeking a kidney transplant). LIMITATIONS: We only included articles published in English. CONCLUSIONS: Indigenous patients receiving dialysis experience inequities in health care that compound existing accessibility issues caused by colonization. Improving the accessibility and cultural responsiveness of dialysis and kidney transplant services in collaboration with Indigenous stakeholders holds promise to enhance the experience of Indigenous patients receiving dialysis. PLAIN-LANGUAGE SUMMARY: Worldwide Indigenous populations suffer a high incidence of chronic disease leading to lower life expectancy, particularly for kidney disease, an insidious condition requiring long-term dialysis treatment. By listening to Indigenous dialysis patients' stories, we hoped to understand how to improve their experience. We gathered 28 qualitative research studies from four countries reporting Indigenous adults' experiences of dialysis. They described lacking awareness of kidney disease, poor access to health services, systemic racism, inadequate cultural safety, and being dislocated from family, community, and culture. These findings indicate that respectful collaboration with Indigenous Peoples to craft and implement policy changes holds promise to improve prevention, integrate culturally responsive health care practices, and provide better access to local dialysis services and opportunities for kidney transplants.
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Povos Indígenas , Nefropatias , Diálise Renal , Adolescente , Adulto , Humanos , Doença Crônica , Acessibilidade aos Serviços de Saúde , Nefropatias/terapia , Pesquisa QualitativaRESUMO
OBJECTIVES: Daytime urinary incontinence is disabling and occurs in 17% of school-aged children. Timed-voiding is part of standard therapy. Can an alarm watch to aid timed-voiding improve treatment response to standard therapy? METHODS: The WATCH (Watch with Alarm for Timed-Voiding in Children) study is a randomized controlled trial. Participants were randomly assigned (1:1) to a vibrating alarm or nonalarming watch for 3-months. The primary outcome was the proportion who achieved a complete response (14 consecutive dry days) after 3-months of treatment. Children aged 5 to 13 years who were prescribed timed-voiding for daytime urinary incontinence. RESULTS: Overall, 243 children, with a mean age of 8 years, were enrolled, with 62% girls. At 3-months, the complete response rates were similar between the 2 groups (22% alarm versus 17% control; difference: 5%; 95% confidence interval (CI): -5% to 16%; P = .42). In the alarm group, treatment adherence was higher (40% vs 10%; difference: 30%; 95% CI: 20% to 40%; P < .001), frequency of incontinence was lower (25% dry; 40% had 1-3 wet days per week, 24% had 4-6 wet days per week, and 12% had daily wetting, compared with 19%, 30%, 35%, and 16%, respectively; P =.05), and fewer had abnormal postvoid residual urine volumes (12% vs 24%; difference: -12%; 95% CI: -21% to -1%; P = .04) compared with the control group. Improvement was transient and did not persist 6 months beyond the treatment period. CONCLUSIONS: Alarm watches do not appear to lead to complete resolution of urinary incontinence in children but did promote treatment adherence, normalization of postvoid residual volumes, and reduction in incontinent episodes while being used.
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Cooperação do Paciente , Sistemas de Alerta , Incontinência Urinária/prevenção & controle , Adolescente , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Masculino , Fatores de Tempo , Resultado do Tratamento , Incontinência Urinária/fisiopatologia , UrinaRESUMO
OBJECTIVES: To identify and describe chronic disease prevention programs offered by Aboriginal Community Controlled Health Services (ACCHSs) in New South Wales (NSW), Australia. METHODS: ACCHSs were identified through the Aboriginal Health and Medical Research Council of NSW website. Chronic disease programs were identified from the Facebook page and website of each ACCHS. Characteristics, including regions, target population, condition, health behaviour, modality and program frequency were extracted and summarised. RESULTS: We identified 128 chronic disease programs across 32 ACCHSs. Of these, 87 (68%) programs were broad in their scope, 20 (16%) targeted youth, three (2%) targeted Elders, 16 (12%) were for females only and five (4%) were for males only. Interventions included physical activity (77, 60%), diet and nutrition (74, 58%), smoking (70, 55%), and the Aboriginal and Torres Strait Islander Health Check (44, 34%), with 93 programs (73%) of ongoing duration. CONCLUSIONS: Chronic disease prevention programs address chronic conditions by promoting physical activity, diet and nutrition, smoking cessation and health screening. Most target the general Aboriginal community, a few target specific groups based on gender and age, and more than one-quarter are time-limited. Implications for public health: Chronic disease programs that are co-produced with specific groups, based on age and gender, may be needed.
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Doença Crônica/prevenção & controle , Comportamentos Relacionados com a Saúde/etnologia , Promoção da Saúde/métodos , Serviços de Saúde do Indígena/estatística & dados numéricos , Estilo de Vida Saudável , Havaiano Nativo ou Outro Ilhéu do Pacífico/psicologia , Abandono do Hábito de Fumar/estatística & dados numéricos , Adolescente , Idoso , Austrália/epidemiologia , Feminino , Humanos , Masculino , New South Wales , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Fumar/epidemiologia , Abandono do Hábito de Fumar/etnologiaRESUMO
BACKGROUND: Paediatric incontinence has traditionally been managed through a discipline-specific approach by doctors, nurses, physiotherapists and psychologists. We evaluated a workshop aiming to increase health professionals' knowledge, confidence and willingness to involve other health professionals when managing paediatric incontinence. METHODS: Our 1-day workshop focused on paediatric bedwetting, daytime incontinence, faecal incontinence and neurogenic bladder. Attendees completed surveys before and after the workshop, and 6 months later. Differences between health professionals and changes in attitudes, knowledge, confidence and experience before and after the workshop were analysed using descriptive analysis. Qualitative data analysis was undertaken using content analysis. RESULTS: The workshop was attended by 77 clinicians (41 doctors, 19 allied health professionals and 17 nurses). Over two-thirds of respondents acknowledged having average or above average knowledge of and/or confidence in managing bedwetting, daytime urinary incontinence (DUI) and faecal incontinence, with lower baseline knowledge and confidence for neurogenic bladder. Participants who completed the initial and final surveys reported increased knowledge, improved ability to manage patients, better appreciation of the contribution of other disciplines and willingness to refer patients to other disciplines. Of those who saw patients with incontinence, most reported that the workshop had improved their management: 33/35 for bedwetting; 31/35 for DUI; 21/29 for faecal incontinence; and 16/19 for neurogenic bladder. Paediatric incontinence has traditionally been managed through a discipline-specific approach by doctors, nurses, physiotherapists and psychologists DISCUSSION: This study demonstrates that an interprofessional workshop conducted by clinicians from different health professional backgrounds increases clinicians' awareness of the roles of other disciplines and promotes the development of an interdisciplinary approach or multiprofessional collaboration, enabling a more effective, patient-centred, collaborative care model.
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Incontinência Fecal/terapia , Ocupações em Saúde/educação , Relações Interprofissionais , Equipe de Assistência ao Paciente/organização & administração , Incontinência Urinária/terapia , Atitude do Pessoal de Saúde , Conscientização , Criança , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , MasculinoRESUMO
OBJECTIVE: To compare a novel code-word alarm with a commercially available wireless alarm for treating enuresis. SETTING: A tertiary paediatric centre. PATIENTS: Children aged 6-18 with at least 3â wet nights per week in the previous 6â months referred by doctors. OUTCOMES: Primary outcome: the proportion who achieved a full response (14 consecutive dry nights) by 16â weeks. Secondary outcomes: change in frequency of wetting, duration of alarm training, percentage of wet nights that the child woke to the alarm, adherence to treatment, adverse events and satisfaction with treatment. RESULTS: Of the 353 participants, 176 were assigned to the code-word alarm and 177 to control. At 16â weeks, 54% (95% CI 47% to 61%) in the experimental group and 47% (95% CI 40% to 55%) in the control group had achieved a full response (p=0.22), with 74% and 66%, respectively, attaining a 50% or more reduction in wetting frequency (p=0.14). The experimental group woke more often than the control group (median percentage of waking 88% vs 77%, p=0.003) and had a greater reduction in wet nights (median reduction of 10 vs 9 nights per fortnight). Fewer in the experimental group discontinued therapy before achieving a full response (27% vs 37% discontinued, p=0.04). There were no significant differences in relapse rates at 6â months, adverse events or satisfaction between the two alarms. CONCLUSIONS: Although the code-word alarm increased waking, no difference in full response rates was demonstrated between the two alarms. TRIAL REGISTRATION NUMBER: ACTRN12609000070235.
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Alarmes Clínicos , Enurese Noturna/terapia , Adolescente , Criança , Feminino , Humanos , Masculino , Cooperação do Paciente , Satisfação do Paciente , Centros de Atenção TerciáriaRESUMO
BACKGROUND: Consolidation on chest radiography is widely used as the reference standard for defining pneumonia and variability in interpretation is well known but not well explored or explained. METHODS: Three pediatric sub-specialists (infectious diseases, radiology and respiratory medicine) viewed 3,033 chest radiographs in children aged under 5 years of age who presented to one Emergency Department (ED) with a febrile illness. Radiographs were viewed blind to clinical information about the child and blind to findings of other readers. Each chest radiograph was identified as positive or negative for consolidation. Percentage agreement and kappa scores were calculated for pairs of readers. Prevalence of consolidation and reader sensitivity/specificity was estimated using latent class analysis. RESULTS: Using the majority rule, 456 (15%) chest radiographs were positive for consolidation while the latent class estimate was 17%. The radiologist was most likely (21.3%) and respiratory physician least likely (13.7%) to diagnose consolidation. Overall percentage agreement for pairs of readers was 85-90%. However, chance corrected agreement between the readers was moderate, with kappa scores 0.4-0.6 and did not vary with patient characteristics (age, gender, and presence of chronic illness). Estimated sensitivity ranged from 0.71 to 0.81 across readers, and specificity 0.91 to 0.98. CONCLUSIONS: Overall agreement for identification of consolidation on chest radiographs was good, but agreement adjusted for chance was only moderate and did not vary with patient characteristics. Clinicians need to be aware that chest radiography is an imperfect test for diagnosing pneumonia and has considerable variability in its interpretation.