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1.
Womens Health (Lond) ; 20: 17455057241233124, 2024.
Article in English | MEDLINE | ID: mdl-38426387

ABSTRACT

BACKGROUND: There is a global shortage of health providers in abortion care. Public discourse presents abortion providers as dangerous and greedy and links 'conscience' with refusal to participate. This may discourage provision. A scoping review of empirical evidence is needed to inform public perceptions of the reasons that health providers participate in abortion. OBJECTIVE: The study aimed to identify what is known about health providers' reasons for participating in abortion provision. ELIGIBILITY CRITERIA: Studies were eligible if they included health providers' reasons for participating in legal abortion provision. Only empirical studies were eligible for inclusion. SOURCES OF EVIDENCE: We searched the following databases from January 2000 until January 2022: Medical Literature Analysis and Retrieval System Online, Excerpta Medica Database, Cumulative Index to Nursing and Allied Health Literature, ScienceDirect and Centre for Agricultural and Biosciences International Abstracts. Grey literature was also searched. METHODS: Dual screening was conducted of both title/abstract and full-text articles. Health providers' reasons for provision were extracted and grouped into preliminary categories based on the existing research. These categories were revised by all authors until they sufficiently reflected the extracted data. RESULTS: From 3251 records retrieved, 68 studies were included. In descending order, reasons for participating in abortion were as follows: supporting women's choices and advocating for women's rights (76%); being professionally committed to participating in abortion (50%); aligning with personal, religious or moral values (39%); finding provision satisfying and important (33%); being influenced by workplace exposure or support (19%); responding to the community needs for abortion services (14%) and participating for practical and lifestyle reasons (8%). CONCLUSION: Abortion providers participated in abortion for a range of reasons. Reasons were mainly focused on supporting women's choices and rights; providing professional health care; and providing services that aligned with the provider's own personal, religious or moral values. The findings provided no evidence to support negative portrayals of abortion providers present in public discourse. Like conscientious objectors, abortion providers can also be motivated by conscience.


Subject(s)
Abortion, Induced , Attitude of Health Personnel , Pregnancy , Female , Humans , Conscience , Health Facilities
2.
BMJ Open ; 14(1): e076907, 2024 01 12.
Article in English | MEDLINE | ID: mdl-38216183

ABSTRACT

INTRODUCTION: Longitudinal studies can provide timely and accurate information to evaluate and inform COVID-19 control and mitigation strategies and future pandemic preparedness. The Optimise Study is a multidisciplinary research platform established in the Australian state of Victoria in September 2020 to collect epidemiological, social, psychological and behavioural data from priority populations. It aims to understand changing public attitudes, behaviours and experiences of COVID-19 and inform epidemic modelling and support responsive government policy. METHODS AND ANALYSIS: This protocol paper describes the data collection procedures for the Optimise Study, an ongoing longitudinal cohort of ~1000 Victorian adults and their social networks. Participants are recruited using snowball sampling with a set of seeds and two waves of snowball recruitment. Seeds are purposively selected from priority groups, including recent COVID-19 cases and close contacts and people at heightened risk of infection and/or adverse outcomes of COVID-19 infection and/or public health measures. Participants complete a schedule of monthly quantitative surveys and daily diaries for up to 24 months, plus additional surveys annually for up to 48 months. Cohort participants are recruited for qualitative interviews at key time points to enable in-depth exploration of people's lived experiences. Separately, community representatives are invited to participate in community engagement groups, which review and interpret research findings to inform policy and practice recommendations. ETHICS AND DISSEMINATION: The Optimise longitudinal cohort and qualitative interviews are approved by the Alfred Hospital Human Research Ethics Committee (# 333/20). The Optimise Study CEG is approved by the La Trobe University Human Ethics Committee (# HEC20532). All participants provide informed verbal consent to enter the cohort, with additional consent provided prior to any of the sub studies. Study findings will be disseminated through public website (https://optimisecovid.com.au/study-findings/) and through peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT05323799.


Subject(s)
COVID-19 , Adult , Humans , COVID-19/prevention & control , SARS-CoV-2 , Longitudinal Studies , Quarantine , Australia
3.
Cochrane Database Syst Rev ; 10: CD015144, 2023 10 09.
Article in English | MEDLINE | ID: mdl-37811673

ABSTRACT

BACKGROUND: This review is an update of a rapid review undertaken in 2020 to identify relevant, feasible and effective communication approaches to promote acceptance, uptake and adherence to physical distancing measures for COVID-19 prevention and control. The rapid review was published when little was known about transmission, treatment or future vaccination, and when physical distancing measures (isolation, quarantine, contact tracing, crowd avoidance, work and school measures) were the cornerstone of public health responses globally. This updated review includes more recent evidence to extend what we know about effective pandemic public health communication. This includes considerations of changes needed over time to maintain responsiveness to pandemic transmission waves, the (in)equities and variable needs of groups within communities due to the pandemic, and highlights again the critical role of effective communication as integral to the public health response. OBJECTIVES: To update the evidence on the question 'What are relevant, feasible and effective communication approaches to promote acceptance, uptake and adherence to physical distancing measures for COVID-19 prevention and control?', our primary focus was communication approaches to promote and support acceptance, uptake and adherence to physical distancing. SECONDARY OBJECTIVE: to explore and identify key elements of effective communication for physical distancing measures for different (diverse) populations and groups. SEARCH METHODS: We searched MEDLINE, Embase and Cochrane Library databases from inception, with searches for this update including the period 1 January 2020 to 18 August 2021. Systematic review and study repositories and grey literature sources were searched in August 2021 and guidelines identified for the eCOVID19 Recommendations Map were screened (November 2021). SELECTION CRITERIA: Guidelines or reviews focusing on communication (information, education, reminders, facilitating decision-making, skills acquisition, supporting behaviour change, support, involvement in decision-making) related to physical distancing measures for prevention and/or control of COVID-19 or selected other diseases (sudden acute respiratory syndrome (SARS), Middle East respiratory syndrome (MERS), influenza, Ebola virus disease (EVD) or tuberculosis (TB)) were included. New evidence was added to guidelines, reviews and primary studies included in the 2020 review. DATA COLLECTION AND ANALYSIS: Methods were based on the original rapid review, using methods developed by McMaster University and informed by Cochrane rapid review guidance. Screening, data extraction, quality assessment and synthesis were conducted by one author and checked by a second author. Synthesis of results was conducted using modified framework analysis, with themes from the original review used as an initial framework. MAIN RESULTS: This review update includes 68 studies, with 17 guidelines and 20 reviews added to the original 31 studies. Synthesis identified six major themes, which can be used to inform policy and decision-making related to planning and implementing communication about a public health emergency and measures to protect the community. Theme 1: Strengthening public trust and countering misinformation: essential foundations for effective public health communication Recognising the key role of public trust is essential. Working to build and maintain trust over time underpins the success of public health communications and, therefore, the effectiveness of public health prevention measures. Theme 2: Two-way communication: involving communities to improve the dissemination, accessibility and acceptability of information Two-way communication (engagement) with the public is needed over the course of a public health emergency: at first, recognition of a health threat (despite uncertainties), and regularly as public health measures are introduced or adjusted. Engagement needs to be embedded at all stages of the response and inform tailoring of communications and implementation of public health measures over time. Theme 3: Development of and preparation for public communication: target audience, equity and tailoring Communication and information must be tailored to reach all groups within populations, and explicitly consider existing inequities and the needs of disadvantaged groups, including those who are underserved, vulnerable, from diverse cultural or language groups, or who have lower educational attainment. Awareness that implementing public health measures may magnify existing or emerging inequities is also needed in response planning, enactment and adjustment over time. Theme 4: Public communication features: content, timing and duration, delivery Public communication needs to be based on clear, consistent, actionable and timely (up-to-date) information about preventive measures, including the benefits (whether for individual, social groupings or wider society), harms (likewise) and rationale for use, and include information about supports available to help follow recommended measures. Communication needs to occur through multiple channels and/or formats to build public trust and reach more of the community. Theme 5: Supporting behaviour change at individual and population levels Supporting implementation of public health measures with practical supports and services (e.g. essential supplies, financial support) is critical. Information about available supports must be widely disseminated and well understood. Supports and communication related to them require flexibility and tailoring to explicitly consider community needs, including those of vulnerable groups. Proactively monitoring and countering stigma related to preventive measures (e.g. quarantine) is also necessary to support adherence. Theme 6: Fostering and sustaining receptiveness and responsiveness to public health communication Efforts to foster and sustain public receptiveness and responsiveness to public health communication are needed throughout a public health emergency. Trust, acceptance and behaviours change over time, and communication needs to be adaptive and responsive to these changing needs. Ongoing community engagement efforts should inform communication and public health response measures. AUTHORS' CONCLUSIONS: Implications for practice Evidence highlights the critical role of communication throughout a public health emergency. Like any intervention, communication can be done well or poorly, but the consequences of poor communication during a pandemic may mean the difference between life and death. The approaches to effective communication identified in this review can be used by policymakers and decision-makers, working closely with communication teams, to plan, implement and adjust public communications over the course of a public health emergency like the COVID-19 pandemic. Implications for research Despite massive growth in research during the COVID-19 period, gaps in the evidence persist and require high-quality, meaningful research. This includes investigating the experiences of people at heightened COVID-19 risk, and identifying barriers to implementing public communication and protective health measures particular to lower- and middle-income countries, and how to overcome these.


Subject(s)
COVID-19 , Humans , COVID-19/prevention & control , Pandemics/prevention & control , Physical Distancing , Public Health , Communication
4.
Cochrane Database Syst Rev ; 3: CD013274, 2023 03 14.
Article in English | MEDLINE | ID: mdl-36917094

ABSTRACT

BACKGROUND: Partnering with consumers in the planning, delivery and evaluation of health services is an essential component of person-centred care. There are many ways to partner with consumers to improve health services, including formal group partnerships (such as committees, boards or steering groups). However, consumers' and health providers' views and experiences of formal group partnerships remain unclear. In this qualitative evidence synthesis (QES), we focus specifically on formal group partnerships where health providers and consumers share decision-making about planning, delivering and/or evaluating health services. Formal group partnerships were selected because they are widely used throughout the world to improve person-centred care. For the purposes of this QES, the term 'consumer' refers to a person who is a patient, carer or community member who brings their perspective to health service partnerships. 'Health provider' refers to a person with a health policy, management, administrative or clinical role who participates in formal partnerships in an advisory or representative capacity. This QES was co-produced with a Stakeholder Panel of consumers and health providers. The QES was undertaken concurrently with a Cochrane intervention review entitled Effects of consumers and health providers working in partnership on health services planning, delivery and evaluation. OBJECTIVES: 1. To synthesise the views and experiences of consumers and health providers of formal partnership approaches that aimed to improve planning, delivery or evaluation of health services. 2. To identify best practice principles for formal partnership approaches in health services by understanding consumers' and health providers' views and experiences. SEARCH METHODS: We searched MEDLINE, Embase, PsycINFO and CINAHL for studies published between January 2000 and October 2018. We also searched grey literature sources including websites of relevant research and policy organisations involved in promoting person-centred care. SELECTION CRITERIA: We included qualitative studies that explored consumers' and health providers' perceptions and experiences of partnering in formal group formats to improve the planning, delivery or evaluation of health services. DATA COLLECTION AND ANALYSIS: Following completion of abstract and full-text screening, we used purposive sampling to select a sample of eligible studies that covered a range of pre-defined criteria, including rich data, range of countries and country income level, settings, participants, and types of partnership activities. A Framework Synthesis approach was used to synthesise the findings of the sample. We appraised the quality of each study using the CASP (Critical Appraisal Skill Program) tool. We assessed our confidence in the findings using the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach. The Stakeholder Panel was involved in each stage of the review from development of the protocol to development of the best practice principles. MAIN RESULTS: We found 182 studies that were eligible for inclusion. From this group, we selected 33 studies to include in the final synthesis. These studies came from a wide range of countries including 28 from high-income countries and five from low- or middle-income countries (LMICs). Each of the studies included the experiences and views of consumers and/or health providers of partnering in formal group formats. The results were divided into the following categories. Contextual factors influencing partnerships: government policy, policy implementation processes and funding, as well as the organisational context of the health service, could facilitate or impede partnering (moderate level of confidence). Consumer recruitment: consumer recruitment occurred in different ways and consumers managed the recruitment process in a minority of studies only (high level of confidence). Recruiting a range of consumers who were reflective of the clinic's demographic population was considered desirable, particularly by health providers (high level of confidence). Some health providers perceived that individual consumers' experiences were not generalisable to the broader population whereas consumers perceived it could be problematic to aim to represent a broad range of community views (high level of confidence). Partnership dynamics and processes: positive interpersonal dynamics between health providers and consumers facilitated partnerships (high level of confidence). However, formal meeting formats and lack of clarity about the consumer role could constrain consumers' involvement (high level of confidence). Health providers' professional status, technical knowledge and use of jargon were intimidating for some consumers (high level of confidence) and consumers could feel their experiential knowledge was not valued (moderate level of confidence). Consumers could also become frustrated when health providers dominated the meeting agenda (moderate level of confidence) and when they experienced token involvement, such as a lack of decision-making power (high level of confidence) Perceived impacts on partnership participants: partnering could affect health provider and consumer participants in both positive and negative ways (high level of confidence). Perceived impacts on health service planning, delivery and evaluation: partnering was perceived to improve the person-centredness of health service culture (high level of confidence), improve the built environment of the health service (high level of confidence), improve health service design and delivery e.g. facilitate 'out of hours' services or treatment closer to home (high level of confidence), enhance community ownership of health services, particularly in LMICs (moderate level of confidence), and improve consumer involvement in strategic decision-making, under certain conditions (moderate level of confidence). There was limited evidence suggesting partnering may improve health service evaluation (very low level of confidence). Best practice principles for formal partnering to promote person-centred care were developed from these findings. The principles were developed collaboratively with the Stakeholder Panel and included leadership and health service culture; diversity; equity; mutual respect; shared vision and regular communication; shared agendas and decision-making; influence and sustainability. AUTHORS' CONCLUSIONS: Successful formal group partnerships with consumers require health providers to continually reflect and address power imbalances that may constrain consumers' participation. Such imbalances may be particularly acute in recruitment procedures, meeting structure and content and decision-making processes. Formal group partnerships were perceived to improve the physical environment of health services, the person-centredness of health service culture and health service design and delivery. Implementing the best practice principles may help to address power imbalances, strengthen formal partnering, improve the experiences of consumers and health providers and positively affect partnership outcomes.


Subject(s)
Health Personnel , Health Services , Humans , Community Participation , Caregivers
5.
Womens Health (Lond) ; 19: 17455057231152373, 2023.
Article in English | MEDLINE | ID: mdl-36785871

ABSTRACT

Institutional objection (IO) occurs when institutions providing health care claim objector status and refuse to provide legally permissible health services such as abortion. IO may be regulated by sources including law, ethical codes and policies (including State and local/institutional policies). We conducted a mixed-methods narrative review of the empirical evidence exploring IO to abortion provision globally, to inform areas for further research. MEDLINE (Ovid), Embase (Ovid), CINAHL (EBSCO), Global Health (CAB Abstracts), ScienceDirect and Scopus were searched in August 2021 using keywords including 'conscientious objection', 'faith-based organizations', 'religious hospitals' and 'abortion'. Eligible research focused on clinicians' attitudes and experiences of IO to abortion. The 28 studies included in the review were from nine countries: United States (19), Chile (2), Turkey (1), Argentina (1), Australia (1), Colombia (1), Ghana (1), Poland (1) and South Africa (1). The analysis demonstrated that IO was claimed in a range of countries, despite different legislative and policy frameworks. There was strong evidence from the United States that clinicians in religious healthcare institutions were less likely to provide abortions and abortion referrals, and that training of future abortion providers was negatively affected by IO. Qualitative evidence from other countries showed that IO was claimed by secular as well as religious institutions, and individual conscientious objection could be used as a mechanism for imposing IO. Further research is needed to explore whether IO is morally justified, how decisions are made to claim IO, and on what grounds. Finally, appropriate models for regulating IO are needed to ensure the protection of women's access to abortion. Such models could be informed by those used to regulate IO in other contexts, such as voluntary assisted dying.


Subject(s)
Abortion, Induced , Attitude of Health Personnel , Pregnancy , Female , Humans , Refusal to Treat , Conscience , South Africa
6.
BMJ Open ; 12(6): e058326, 2022 06 16.
Article in English | MEDLINE | ID: mdl-35710237

ABSTRACT

BACKGROUND: Guideline developers are encouraged to engage patients, carers and their representatives ('consumers') from diverse backgrounds in guideline development to produce more widely applicable guidelines. However, consumers from diverse backgrounds are infrequently included in guidelines and there is scant research to support guideline developers to do this. OBJECTIVES: To identify principles and approaches to broaden the diversity of consumers engaged in guideline development. DESIGN: Scoping review and semi-structured interviews. METHODS: We conducted comprehensive searches to March 2020 for studies, reports and guidance documents. Inclusion criteria included the terms 'consumer' (patients, carers and their representatives), 'diversity' (defined using the PROGRESS-PLUS mnemonic) and 'consumer engagement' (the active involvement of consumers at any stage of guideline development). We also conducted four interviews with consumers and guideline developers. We used descriptive synthesis to identify themes, and summarised information about implemented approaches used to broaden diversity of consumers in guidelines. RESULTS: From 10 included documents, we identified eight themes. Themes covered general engagement concepts (Respectful partnerships; Recruitment; Expectations, process and review); specific concepts about guideline development group (GDG) engagement (Characteristics of guideline personnel; Consumers' role, characteristics and prominence; Preparing and supporting consumers); and other (non-GDG) approaches (Online methods; Consultations and research-based approaches). The most commonly included PROGRESS-PLUS categories were Disability, Race/culture/ethnicity/language, Place of residence and Other vulnerable (eg, 'disadvantaged groups'). Each theme included the views of both consumers and guideline developers. We found descriptions of 12 implemented engagement approaches to broaden diversity of consumers in guidelines. CONCLUSIONS: Relationship-building, mitigating power imbalances and meeting consumers where they are at underpin our findings. Engaging with diverse groups may require greater attention to building formal, respectful partnerships and employing inclusive engagement methods.


Subject(s)
Caregivers , Ethnicity , Humans
7.
Campbell Syst Rev ; 18(2): e1232, 2022 Jun.
Article in English | MEDLINE | ID: mdl-36911340

ABSTRACT

This is the protocol for a Campbell systematic review. The overall objective of this study is to gather and summarize the existing literature on conflict of interest issues when engaging stakeholders in guideline development.

8.
Cochrane Database Syst Rev ; 9: CD013373, 2021 09 15.
Article in English | MEDLINE | ID: mdl-34523117

ABSTRACT

BACKGROUND: Health services have traditionally been developed to focus on specific diseases or medical specialties. Involving consumers as partners in planning, delivering and evaluating health services may lead to services that are person-centred and so better able to meet the needs of and provide care for individuals. Globally, governments recommend consumer involvement in healthcare decision-making at the systems level, as a strategy for promoting person-centred health services. However, the effects of this 'working in partnership' approach to healthcare decision-making are unclear. Working in partnership is defined here as collaborative relationships between at least one consumer and health provider, meeting jointly and regularly in formal group formats, to equally contribute to and collaborate on health service-related decision-making in real time. In this review, the terms 'consumer' and 'health provider' refer to partnership participants, and 'health service user' and 'health service provider' refer to trial participants. This review of effects of partnership interventions was undertaken concurrently with a Cochrane Qualitative Evidence Synthesis (QES) entitled Consumers and health providers working in partnership for the promotion of person-centred health services: a co-produced qualitative evidence synthesis. OBJECTIVES: To assess the effects of consumers and health providers working in partnership, as an intervention to promote person-centred health services. SEARCH METHODS: We searched the CENTRAL, MEDLINE, Embase, PsycINFO and CINAHL databases from 2000 to April 2019; PROQUEST Dissertations and Theses Global from 2016 to April 2019; and grey literature and online trial registries from 2000 until September 2019. SELECTION CRITERIA: We included randomised controlled trials (RCTs), quasi-RCTs, and cluster-RCTs of 'working in partnership' interventions meeting these three criteria: both consumer and provider participants meet; they meet jointly and regularly in formal group formats; and they make actual decisions that relate to the person-centredness of health service(s). DATA COLLECTION AND ANALYSIS: Two review authors independently screened most titles and abstracts. One review author screened a subset of titles and abstracts (i.e. those identified through clinical trials registries searches, those classified by the Cochrane RCT Classifier as unlikely to be an RCT, and those identified through other sources). Two review authors independently screened all full texts of potentially eligible articles for inclusion. In case of disagreement, they consulted a third review author to reach consensus. One review author extracted data and assessed risk of bias for all included studies and a second review author independently cross-checked all data and assessments. Any discrepancies were resolved by discussion, or by consulting a third review author to reach consensus. Meta-analysis was not possible due to the small number of included trials and their heterogeneity; we synthesised results descriptively by comparison and outcome. We reported the following outcomes in GRADE 'Summary of findings' tables: health service alterations; the degree to which changed service reflects health service user priorities; health service users' ratings of health service performance; health service users' health service utilisation patterns; resources associated with the decision-making process; resources associated with implementing decisions; and adverse events. MAIN RESULTS: We included five trials (one RCT and four cluster-RCTs), with 16,257 health service users and more than 469 health service providers as trial participants. For two trials, the aims of the partnerships were to directly improve the person-centredness of health services (via health service planning, and discharge co-ordination). In the remaining trials, the aims were indirect (training first-year medical doctors on patient safety) or broader in focus (which could include person-centredness of health services that targeted the public/community, households or health service delivery to improve maternal and neonatal mortality). Three trials were conducted in high income-countries, one was in a middle-income country and one was in a low-income country. Two studies evaluated working in partnership interventions, compared to usual practice without partnership (Comparison 1); and three studies evaluated working in partnership as part of a multi-component intervention, compared to the same intervention without partnership (Comparison 2). No studies evaluated one form of working in partnership compared to another (Comparison 3). The effects of consumers and health providers working in partnership compared to usual practice without partnership are uncertain: only one of the two studies that assessed this comparison measured health service alteration outcomes, and data were not usable, as only intervention group data were reported. Additionally, none of the included studies evaluating this comparison measured the other primary or secondary outcomes we sought for the 'Summary of findings' table. We are also unsure about the effects of consumers and health providers working in partnership as part of a multi-component intervention compared to the same intervention without partnership. Very low-certainty evidence indicated there may be little or no difference on health service alterations or health service user health service performance ratings (two studies); or on health service user health service utilisation patterns and adverse events (one study each). No studies evaluating this comparison reported the degree to which health service alterations reflect health service user priorities, or resource use. Overall, our confidence in the findings about the effects of working in partnership interventions was very low due to indirectness, imprecision and publication bias, and serious concerns about risk of selection bias; performance bias, detection bias and reporting bias in most studies. AUTHORS' CONCLUSIONS: The effects of consumers and providers working in partnership as an intervention, or as part of a multi-component intervention, are uncertain, due to a lack of high-quality evidence and/or due to a lack of studies. Further well-designed RCTs with a clear focus on assessing outcomes directly related to partnerships for patient-centred health services are needed in this area, which may also benefit from mixed-methods and qualitative research to build the evidence base.


Subject(s)
Delivery of Health Care , Health Services , Family , Humans , Infant Mortality , Infant, Newborn , Patient Safety
10.
Health Evidence Network synthesis report;72
Monography in English | WHO IRIS | ID: who-339887

ABSTRACT

Physical distancing measures have been implemented worldwide to contain the transmission of COVID-19, but how best to communicate with the public to promote acceptance, uptake and adherence to these measures is less clear. This rapid review analysed evidence regarding communication with individuals and communities within the wider structural and sociopolitical context of the pandemic to support public health decision-makers when planning and implementing physical distancing measures. Findings indicated the critical role played by public communication and information in the pandemic response. Consistent features of effective communication included: clear, consistent and actionable content; attention to the timing and currency of messages; consideration of the audiences for communication within and across populations; and deliberate considerations of tailoring and equity to ensure diverse population groups are reached and existing inequalities addressed. Comprehensive practical support, including access to essential services and financial support, was also critical to promote acceptance, uptake and adherence to required measures. Findings also emphasized the importance of building and maintaining public trust in authorities and of engaging communities when planning and delivering messages related to physical distancing measures.


Subject(s)
Communicable Disease Control , Betacoronavirus , COVID-19 , Disease Outbreaks , Health Education , Risk Assessment , Self Care , Social Isolation , Socioeconomic Factors
11.
Qual Health Res ; 29(10): 1508-1518, 2019 08.
Article in English | MEDLINE | ID: mdl-30999812

ABSTRACT

Patient safety policies increasingly encourage carer (i.e., family or friends) involvement in reducing health care-associated harm in hospital. Despite this, carer involvement in patient safety in practice is not well understood-especially from the carers' perspective. The purpose of this article is to understand how carers of adult patients perceived and experienced their patient safety contributions in hospital. Constructivist grounded theory informed the data collection and analysis of in-depth interviews with 32 carers who had patient safety concerns in Australian hospitals. Results demonstrated carers engaged in the process of "patient-safety caring." Patient-safety caring included three levels of intensity: low ("contributing without concern"), moderate ("being proactive about safety"), and high ("wrestling for control"). Carers who engaged at high intensity provided the patient with greater protection, but typically experienced negative consequences for themselves. Carers' experiences of negative consequences from safety involvement need to be mitigated by practice approaches that value their contributions.


Subject(s)
Caregivers/psychology , Hospitals , Patient Safety , Adult , Aged , Attitude to Health , Australia , Female , Humans , Interviews as Topic , Male , Medical Errors/prevention & control , Middle Aged , Young Adult
12.
Health Sci Rep ; 1(3): e24, 2018 Mar.
Article in English | MEDLINE | ID: mdl-30623063

ABSTRACT

BACKGROUND AND AIMS: In earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy, understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people affected by MS. METHODS: A 2-phase mixed-methods project, conducted in partnership with consumers and an MS organisation. Phase 1 included review panels with consumers (Australians affected by MS) and health professionals to test paper-based treatment summaries before development, and pilot testing of the website. Phase 2 involved an online survey after website launch. RESULTS: Eighty-three participants (85% affected by MS) took part. Phase 1 participants strongly endorsed key review summary components, including layering information, and additional sections to aid personal applicability. Participants additionally suggested questions for health professionals. Participants across both phases were receptive to the idea of being provided with Cochrane Review summaries online but were seeking other types of evidence and information, such as personal experiences and the latest experimental treatments, which could not be provided. While the small survey sample size (n = 58) limits application of the results to a broader population, the website was viewed favourably, as a useful, understandable, and trustworthy information source. CONCLUSION: We describe a partnership approach to developing online evidence-based treatment information, underpinned by an in-depth understanding of consumers' information needs.

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