Palliativ omvårdnad i hemmet - de anhörigas upplevelse av delaktighet : En litteraturstudie

Bakgrund: Tack vare en mer avancerad hemsjukvård har den palliativa vården utvecklats, vilket gör det möjligt för fler människor att dö i det egna hemmet. Palliativ vård handlar inte endast om patienten, utan involverar även de anhöriga. Det övergripande målet för palliativ vård är att patienten och den anhörige upplever god livskvalitet till livets slut. De anhörigas närvaro är betydelsefull, inte endast för patienten utan även för vårdarna. De anhöriga befinner sig i en mycket påfrestande situation och det är viktigt att vårdare har kunskap om vad de anhöriga upplever och hur man kan stötta de anhöriga i deras situation. Syfte: Att belysa anhörigas upplevelser av delaktighet i samband med palliativ omvårdnad i hemmet. Metod: En litteraturstudie baserad på 11 vetenskapliga artiklar av kvalitativ ansats. Resultat: 2 kategorier framkom ur studien. Delaktighet ger anhöriga upplevelsen av att få vardagen att fungera och Anhörigas delaktighet bidrar till personcentrerad vård. Det blev en drastisk förändring i livet för de anhöriga. Det var inte bara hemmet som förändras i och med all teknisk utrustning och hjälpmedel som patienten behövde. De anhörigas livsförändringar gjorde att det sociala livet fick lida. Tankar kring existentiella frågor dök upp när man levde så nära inpå döden och det var viktigt för de anhöriga att vårdarna kunde se och lyssna även på deras behov. En god kommunikation var viktigt för att de anhöriga skulle våga prata om sina egna behov, tankar och åsikter. Slutsats: Det viktigaste för de anhöriga var att kommunikationen, stödet och informationen fungerade mellan alla parter. Fungerade dessa delar så byggdes en god relation mellan parterna och man fick en god tillit till vården. Samarbetet blev bättre och de anhöriga kände sig som en i teamet.

Conceptualising health literacy from the patient perspective

Objective : A person's health literacy, i.e., their ability to seek, understand and use health information, is a critical determinant of whether they are able to actively participate in their healthcare. The objective of this study was to conceptualise health literacy from the patient perspective.

Methods : Using comprehensive qualitative methods 48 individuals were interviewed across three distinct groups in Australia: those with a chronic condition, the general community and individuals who had recently presented to a metropolitan public hospital emergency department. Purposeful sampling was employed to ensure a range of experiences was captured.

Results : Seven key abilities were identified: knowing when to seek health information; knowing where to seek health information; verbal communication skills; assertiveness; literacy skills; capacity to process and retain information; application skills.

Conclusion : This study identifies key abilities patients identified as critical to seek, understand and utilise information in the healthcare setting. These abilities are not reflected in existing measures for health literacy. Future measures of health literacy could consider incorporating abilities identified in this study and may provide guidance in developing health interventions to assist patients to participate effectively in their health.

Practice implications : More comprehensive measures to assess patient's health literacy are needed.

Influencing health equity : role of the effective consumer scale in measuring skills and abilities in a middle income country

The 2008 World Health Report emphasizes the need for patient-centered primary care service delivery models in which patients are equal partners in the planning and management of their health. It is argued that this involvement will lead to improved management of disease, improved health outcomes and patient satisfaction, better informed decision-making, increased compliance with healthcare decisions, and better resource utilization. This article investigates the domains captured by the Effective Consumer Scale (EC-17) in relation to vulnerable population groups that experience health inequity. Particular focus is paid to the domain of health literacy as an area fundamental to patients’ involvement in managing their condition and negotiating the healthcare system. In examining the possible influence of Outcome Measures in Rheumatology Clinical Trials (OMERACT) on health equity, we used the recent translation and validation of the EC-17 scale into Spanish and tested Argentina as an example. Future plans to use the EC-17 with vulnerable groups include formal collaboration and needs assessment with the community to tailor an intervention to meet its needs in a culturally relevant manner. Some systematic reviews have questioned whether interventions to improve effective consumer skills are appropriate in vulnerable populations. We propose that these populations may have the most to gain from such interventions since they might be expected to have relatively lower skills and health literacy than other groups.

Bioethics, cultural differences and the problem of moral disagreements in end-Of-life care : a terror management theory

Cultural differences in end-of-life care and the moral disagreements these sometimes give rise to have been well documented. Even so, cultural considerations relevant to end-of-life care remain poorly understood, poorly guided, and poorly resourced in health care domains. Although there has been a strong emphasis in recent years on making policy commitments to patient-centred care and respecting patient choices, persons whose minority cultural worldviews do not fit with the worldviews supported by the conventional principles of western bioethics face a perpetual struggle in getting their care needs met in a meaningful, safe, and healing way. In this essay, attention is given to exploring why cultural differences exist, why they matter, and how health care providers should treat them in order to reduce the incidence and impact of otherwise preventable harmful moral outcomes in end-of-life care. In addressing these questions, a novel application of the renowned terror management theory will be made.

A systematic approach to chronic heart failure care : a consensus statement

The National Heart Foundation of Australia assembled an expert panel to provide guidance on policy and system changes to improve the quality of care for people with chronic heart failure (CHF). The recommendations have the potential to reduce emergency presentations, hospitalisations and premature death among patients with CHF. Best-practice management of CHF involves evidencebased, multidisciplinary, patient-centred care, which leads to better health outcomes. A CHF care model is required to achieve this. Although CHF management programs exist, ensuring access for everyone remains a challenge. This is particularly so for Aboriginal and Torres Strait Islander peoples, those from non-metropolitan areas and lower socioeconomic backgrounds, and culturally and linguistically diverse populations. Lack of data and inadequate identifi cation of people with CHF prevents effi cient patient monitoring, limiting information to improve or optimise care. This leads to ineff ectiveness in measuring outcomes and evaluating the CHF care provided. Expanding current cardiac registries to include patients with CHF and developing mechanisms to promote data linkage across care transitions are essential. As the prevalence of CHF rises, the demand for multidisciplinary workforce support will increase. Workforce planning should provide access to services outside of large cities, one of the main challenges it is currently facing. To enhance community-based management of CHF, general practitioners should be empowered to lead care. Incentive arrangements should favour provision of care for Aboriginal and Torres Strait Islander peoples, those from lower socioeconomic backgrounds and rural areas, and culturally and linguistically diverse populations. Ongoing research is vital to improving systems of care for people with CHF. Future research activity needs to ensure the translation of valuable knowledge and high quality evidence into practice.

Complexities of medicines safety: communicating about managing medicines at transition points of care across emergency departments and medical wards

To explore how health professionals, patients and family members communicate about managing medicines across transition points of care in two Australian public hospitals.

INTroducing a care bundle to prevent pressure injury (INTACT) in at-risk patients: a protocol for a cluster randomised trial

BACKGROUND: Pressure injuries are a significant clinical and economic issue, affecting both patients and the health care system. Many pressure injuries in hospitals are facility acquired, and are largely preventable. Despite growing evidence and directives for pressure injury prevention, implementation of preventative strategies is suboptimal, and pressure injuries remain a serious problem in hospitals. OBJECTIVES: This study will test the effectiveness and cost-effectiveness of a patient-centred pressure injury prevention care bundle on the development of hospital acquired pressure injury in at-risk patients. DESIGN: This is a multi-site, parallel group cluster randomised trial. The hospital is the unit of randomisation. METHODS: Adult medical and surgical patients admitted to the study wards of eight hospitals who are (a) deemed to be at risk of pressure injury (i.e. have reduced mobility), (b) expected to stay in hospital for ≥48h, (c) admitted to hospital in the past 36h; and (d) able to provide informed consent will be eligible to participate. Consenting patients will receive either the pressure injury prevention care bundle or standard care. The care bundle contains three main messages: (1) keep moving; (2) look after your skin; and (3) eat a healthy diet. Nurses will receive education about the intervention. Patients will exit the study upon development of a pressure injury, hospital discharge or 28 days, whichever comes first; transfer to another hospital or transfer to critical care and mechanically ventilated. The primary outcome is incidence of hospital acquired pressure injury. Secondary outcomes are pressure injury stage, patient participation in care and health care costs. A health economic sub-study and a process evaluation will be undertaken alongside the trial. Data will be analysed at the cluster (hospital) and patient level. Estimates of hospital acquired pressure injury incidence in each group, group differences and 95% confidence interval and p values will be reported. DISCUSSION: To our knowledge, this is the first trial of an intervention to incorporate a number of pressure injury prevention strategies into a care bundle focusing on patient participation and nurse-patient partnership. The results of this study will provide important information on the effectiveness and cost-effectiveness of this intervention in preventing pressure injuries in at-risk patients. If the results confirm the utility of the developed care bundle, it could have a significant impact on clinical practice worldwide. TRIAL REGISTRATION: This trial is registered with the Australian New Zealand Clinical Trials Registry, ACTRN12613001343796.

Patients' perceptions of participation in nursing care on medical wards

BACKGROUND: Patient participation benefits the patient and is a core concept of patient-centred care. Patients believe in their ability to prevent errors; thus, they may play a vital role in combating adverse event rates in hospitals. AIMS AND OBJECTIVES: To explore hospitalised medical patients' perceptions of participating in nursing care, including the barriers and facilitators for this activity. RESEARCH METHODS: This interpretive study was conducted on four medical wards, in two hospitals. Purposeful maximum variation sampling was operationalised to recruit patients that differed in areas such as age, gender and mobility status. In-depth semi-structured audiotaped interviews were undertaken and analysed using inductive content analysis. RESULTS: Twenty patients participated in the study. Four categories were uncovered in the data. First, valuing participation showed patients' willingness to participate, viewing it as a worthwhile task. Second, exchanging intelligence was a way of participating where patients' knowledge was built and shared with health professionals. Third, on the lookout was a type of participation where patients monitored their care, showing an attentive approach towards their own safety. Fourth, power imbalance was characterised by patients feeling their opportunities for participation were restricted. CONCLUSIONS: Patients were motivated to participate and valued participation. Cultivating this motivation may be crucial to patient empowerment and practices of safety monitoring, a fundamental strategy to addressing patient safety issues in hospitals. Engaging nurse-patient relationships, inclusive of knowledge sharing, is required in practice to empower patients to participate. Educating patients on the consequences of non-participation may motivate them, while nurses may benefit from training on patient-centred approaches. Future research should address ways to increase patient motivation and opportunities to participate.

A systematic review of reliable and valid tools for the measurement of patient participation in healthcare

INTRODUCTION: Patient participation in healthcare is recognised internationally as essential for consumer-centric, high-quality healthcare delivery. Its measurement as part of continuous quality improvement requires development of agreed standards and measurable indicators. AIM: This systematic review sought to identify strategies to measure patient participation in healthcare and to report their reliability and validity. In the context of this review, patient participation was constructed as shared decision-making, acknowledging the patient as having critical knowledge regarding their own health and care needs and promoting self-care/autonomy. METHODS: Following a comprehensive search, studies reporting reliability or validity of an instrument used in a healthcare setting to measure patient participation, published in English between January 2004 and March 2014 were eligible for inclusion. RESULTS: From an initial search, which identified 1582 studies, 156 studies were retrieved and screened against inclusion criteria. Thirty-three studies reporting 24 patient participation measurement tools met inclusion criteria, and were critically appraised. The majority of studies were descriptive psychometric studies using prospective, cross-sectional designs. Almost all the tools completed by patients, family caregivers, observers or more than one stakeholder focused on aspects of patient-professional communication. Few tools designed for completion by patients or family caregivers provided valid and reliable measures of patient participation. There was low correlation between many of the tools and other measures of patient satisfaction. CONCLUSION: Few reliable and valid tools for measurement of patient participation in healthcare have been recently developed. Of those reported in this review, the dyadic Observing Patient Involvement in Decision Making (dyadic-OPTION) tool presents the most promise for measuring core components of patient participation. There remains a need for further study into valid, reliable and feasible strategies for measuring patient participation as part of continuous quality improvement.

Patient and nurse preferences for nurse handover-using preferences to inform policy: a discrete choice experiment protocol

INTRODUCTION: Nursing bedside handover in hospital has been identified as an opportunity to involve patients and promote patient-centred care. It is important to consider the preferences of both patients and nurses when implementing bedside handover to maximise the successful uptake of this policy. We outline a study which aims to (1) identify, compare and contrast the preferences for various aspects of handover common to nurses and patients while accounting for other factors, such as the time constraints of nurses that may influence these preferences.; (2) identify opportunities for nurses to better involve patients in bedside handover and (3) identify patient and nurse preferences that may challenge the full implementation of bedside handover in the acute medical setting. METHODS AND ANALYSIS: We outline the protocol for a discrete choice experiment (DCE) which uses a survey design common to both patients and nurses. We describe the qualitative and pilot work undertaken to design the DCE. We use a D-efficient design which is informed by prior coefficients collected during the pilot phase. We also discuss the face-to-face administration of this survey in a population of acutely unwell, hospitalised patients and describe how data collection challenges have been informed by our pilot phase. Mixed multinomial logit regression analysis will be used to estimate the final results. ETHICS AND DISSEMINATION: This study has been approved by a university ethics committee as well as two participating hospital ethics committees. Results will be used within a knowledge translation framework to inform any strategies that can be used by nursing staff to improve the uptake of bedside handover. Results will also be disseminated via peer-reviewed journal articles and will be presented at national and international conferences.

Patient engagement in clinical communication: an exploratory study

AIM: Existing practice strategies for actively involving patients in care during hospitalisation are poorly understood. The aim of this study was to explore how healthcare professionals engaged patients in communication associated with care transitions.

METHOD: An instrumental, collective case study approach was used to generate empirical data about patient transitions in care. A purposive sample of key stakeholders representing (i) patients and their families; (ii) hospital discharge planning team members; and (iii) healthcare professionals was recruited in five Australian health services. Individual and group semi-structured interviews were conducted to elicit detailed explanations of patient engagement in transition planning. Interviews lasted between 30 and 60 minutes and were digitally recorded and transcribed verbatim. Data collection and analysis were conducted simultaneously and continued until saturation was achieved. Thematic analysis was undertaken.

RESULTS: Five themes emerged as follows: (i) organisational commitment to patient engagement; (ii) the influence of hierarchical culture and professional norms on patient engagement; (iii) condoning individual healthcare professionals' orientations and actions; (iv) understanding and negotiating patient preferences; and (v) enacting information sharing and communication strategies. Most themes illustrated how patient engagement was enabled; however, barriers also existed.

CONCLUSION: Our findings show that strong organisational and professional commitment to patient-centred care throughout the organisation was a consistent feature of health services that actively engaged patients in clinical communication. Understanding patients' needs and preferences and having both formal and informal strategies to engage patients in clinical communication were important in how this involvement occurred.

Adesão ao tratamento, acesso e qualidade da assistência em Aids no Brasil

A adesão à terapia antirretroviral (TARV) é crucial para a efetividade e o impacto do tratamento da Aids. Este artigo discute as relações entre adesão e qualidade dos serviços de assistência a pessoas vivendo com Aids (PVA), evidenciando a qualidade como elo central entre adesão e acesso. Está baseado nos resultados de pesquisas que conduzimos sobre a atenção a PVA no Brasil. Nossos estudos apontam que os grupos de pacientes acompanhados em serviços com número inferior a 100 pacientes apresentam risco estimado de não adesão maior do que os grupos acompanhados em serviços com mais de 500 pacientes. Apontam também que serviços com menos de 100 pacientes têm risco estimado maior de pertencer a grupos de má qualidade. Isto está relacionado à baixa complexidade observada nos serviços de menor porte caracterizada por: dificuldades em manter uma estrutura mínima de recursos humanos e materiais, simplificação da organização dos processos de trabalho, centramento no trabalho autônomo do profissional médico e gerenciamento sem projeto técnico. Há necessidade de pautar novos estudos sobre adesão e qualidade. As evidências existentes já apontam, porém, a necessidade de revisão na alocação dos serviços de assistência a PVA, bem como a de homogeneizar a qualificação destes serviços, condições necessárias para a manutenção de taxas aceitáveis de adesão à TARV no país.

Atención farmacéutica como proceso pedagógico: Relato de un caso

The autonomy pedagogy allows the integration among theory, practice and reflection in the learning process. Applied to pharmaceutical care, the patient-centered process to achieve desired goals of therapy enables to build, rebuild and share knowledge and experiences with patients, in a critic and progressive way, inquiring and investigating. Therefore, it is possible to design a care plan according to patient experience, working together with the pharmaceutical care practitioner, to solve drugtherapy problems detected, with the patient as the center of the health care system. © 2012 Ediciones Mayo, S.A. Todos los derechos reservados.

Association between education in EOL care and variability in EOL practice: a survey of ICU physicians

This study investigated the association between physician education in EOL and variability in EOL practice, as well as the differences between beliefs and practices regarding EOL in the ICU. Physicians from 11 ICUs at a university hospital completed a survey presenting a patient in a vegetative state with no family or advance directives. Questions addressed approaches to EOL care, as well physicians' personal, professional and EOL educational characteristics. The response rate was 89%, with 105 questionnaires analyzed. Mean age was 38 +/- A 8 years, with a mean of 14 +/- A 7 years since graduation. Physicians who did not apply do-not-resuscitate (DNR) orders were less likely to have attended EOL classes than those who applied written DNR orders [0/7 vs. 31/47, OR = 0.549 (0.356-0.848), P = 0.001]. Physicians who involved nurses in the decision-making process were more likely to be ICU specialists [17/22 vs. 46/83, OR = 4.1959 (1.271-13.845), P = 0.013] than physicians who made such decisions among themselves or referred to ethical or judicial committees. Physicians who would apply "full code" had less often read about EOL [3/22 vs. 11/20, OR = 0.0939 (0.012-0.710), P = 0.012] and had less interest in discussing EOL [17/22 vs. 20/20, OR = 0.210 (0.122-0.361), P < 0.001], than physicians who would withdraw life-sustaining therapies. Forty-four percent of respondents would not do what they believed was best for their patient, with 98% of them believing a less aggressive attitude preferable. Legal concerns were the leading cause for this dichotomy. Physician education about EOL is associated with variability in EOL decisions in the ICU. Moreover, actual practice may differ from what physicians believe is best for the patient.