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International Journal of Nursing Studies Mar 2015Despite the extent of volunteers' contribution to palliative care, and their role in direct patient care, there has been no systematic evaluation of the evidence-base on... (Comparative Study)
Comparative Study Review
Does involving volunteers in the provision of palliative care make a difference to patient and family wellbeing? A systematic review of quantitative and qualitative evidence.
CONTEXT
Despite the extent of volunteers' contribution to palliative care, and their role in direct patient care, there has been no systematic evaluation of the evidence-base on volunteers in relation to patient and family wellbeing.
OBJECTIVE
To critically review research, on the impact of volunteers involved in the direct care of palliative patients and their families.
METHODS
We searched for studies, reporting patient and family data on the impact of volunteer services in palliative care in thirteen citation databases up to May 2013. We included quantitative comparative studies. We also noted any non-comparative studies, enabling us to give a comprehensive review of the existing research. We also included qualitative studies that explored the experiences of patients and families who received volunteer support, potentially illustrating which aspects of volunteer activities patients and families value. We applied quality appraisal criteria to all studies meeting inclusion criteria. Two researchers undertook key review processes.
RESULTS
We found eight studies. Only two studies were undertaken outside of North America; one in the Netherlands and the other in Uganda. All studies were in adult palliative care services. All evaluated volunteers were in home care settings, three of the studies included other settings such as hospitals and nursing homes. All of the studies fulfilled our quality appraisal criteria. Six of them were quantitative studies and two were comparative: one found that those families who experienced greater (as opposed to lesser) volunteer involvement were significantly more satisfied with care; the other found that patients survived significantly longer if they had received home visits from a volunteer. Four cross-sectional studies focused on satisfaction ratings. No study considered possible disadvantages or adverse effects of volunteer involvement. Two qualitative studies were identified; both highlighted the uniqueness of the role volunteers may fulfil in care support, from the viewpoint of patients and their families.
CONCLUSIONS
Further research is needed to ensure the resource of volunteers in palliative care is used appropriately and effectively. Evaluation in well-designed comparative studies is recommended including economic analyses, as are further qualitative studies to explore the roles, benefits and possible adverse effects of volunteers. Evaluation is particularly needed outside of North America and in dedicated hospice facilities.
Topics: Family; Palliative Care; Patients; Volunteers; Workforce
PubMed: 25205665
DOI: 10.1016/j.ijnurstu.2014.08.007 -
BMC Health Services Research Jul 2014Clinical practice guidelines are typically written for healthcare providers but there is increasing interest in producing versions for the public, patients and carers.... (Review)
Review
BACKGROUND
Clinical practice guidelines are typically written for healthcare providers but there is increasing interest in producing versions for the public, patients and carers. The main objective of this review is to identify and synthesise evidence of the public's attitudes towards clinical practice guidelines and evidence-based recommendations written for providers or the public, together with their awareness of guidelines.
METHODS
We included quantitative and qualitative studies of any design reporting on public, patient (and their carers) attitudes and awareness of guidelines written for providers or patients/public. We searched electronic databases including MEDLINE, PSYCHINFO, ERIC, ASSIA and the Cochrane Library from 2000 to 2012. We also searched relevant websites, reviewed citations and contacted experts in the field. At least two authors independently screened, abstracted data and assessed the quality of studies. We conducted a thematic analysis of first and second order themes and performed a separate narrative synthesis of patient and public awareness of guidelines.
RESULTS
We reviewed 5415 records and included 26 studies (10 qualitative studies, 13 cross sectional and 3 randomised controlled trials) involving 24 887 individuals. Studies were mostly good to fair quality. The thematic analysis resulted in four overarching themes: Applicability of guidelines; Purpose of guidelines for patient; Purpose of guidelines for health care system and physician; and Properties of guidelines. Overall, participants had mixed attitudes towards guidelines; some participants found them empowering but many saw them as a way of rationing care. Patients were also concerned that the information may not apply to their own health care situations. Awareness of guidelines ranged from 0-79%, with greater awareness in participants surveyed on national guideline websites.
CONCLUSION
There are many factors, not only formatting, that may affect the uptake and use of guideline-derived material by the public. Producers need to make clear how the information is relevant to the reader and how it can be used to make healthcare improvements although there were problems with data quality. Awareness of guidelines is generally low and guideline producers cannot assume that the public has a more positive perception of their material than of alternative sources of health information.
Topics: Awareness; Evidence-Based Practice; Humans; Patients; Practice Guidelines as Topic; Public Opinion
PubMed: 25064372
DOI: 10.1186/1472-6963-14-321 -
Health Services Research Oct 2021To assess the prevalence of patient administrative tasks and whether they are associated with delayed and/or foregone care.
OBJECTIVE
To assess the prevalence of patient administrative tasks and whether they are associated with delayed and/or foregone care.
DATA SOURCE
March 2019 Health Reform Monitoring Survey.
STUDY DESIGN
We assess the prevalence of five common patient administrative tasks-scheduling, obtaining information, prior authorizations, resolving billing issues, and resolving premium problems-and associated administrative burden, defined as delayed and/or foregone care. Using multivariate logistic models, we examined the association of demographic characteristics with odds of doing tasks and experiencing burdens. Our outcome variables were five common types of administrative tasks as well as composite measures of any task, any delayed care, any foregone care, and any burden (combined delayed/foregone), respectively.
DATA COLLECTION
We developed and administered survey questions to a nationally representative sample of insured, nonelderly adults (n = 4155).
PRINCIPAL FINDINGS
The survey completion rate was 62%. Seventy-three percent of respondents reported performing at least one administrative task in the past year. About one in three task-doers, or 24.4% of respondents overall, reported delayed or foregone care due to an administrative task: Adjusted for demographics, disability status had the strongest association with administrative tasks (adjusted odds ratio [OR] 2.91, p < 0.001) and burden (adjusted OR 1.66, p < 0.001). Being a woman was associated with doing administrative tasks (adjusted OR 2.19, p < 0.001). Being a college graduate was associated with performing an administrative task (adjusted OR 2.79, p < 0.001), while higher income was associated with fewer subsequent burdens (adjusted OR 0.55, p < 0.01).
CONCLUSIONS
Patients frequently do administrative tasks that can create burdens resulting in delayed/foregone care. The prevalence of delayed/foregone care due to administrative tasks is comparable to similar estimates of cost-related barriers to care. Demographic disparities in burden warrant further attention. Enhancing measurement of patient administrative work and associated burdens may identify opportunities for assessing quality, value, and patient experience.
Topics: Adolescent; Adult; Appointments and Schedules; Consumer Health Informatics; Cost Sharing; Female; Health Services Accessibility; Health Services Administration; Health Status; Humans; Information Seeking Behavior; Male; Middle Aged; Patients; Prior Authorization; Sociodemographic Factors; Time Factors; Time-to-Treatment; Young Adult
PubMed: 34498259
DOI: 10.1111/1475-6773.13861 -
Intensive & Critical Care Nursing Dec 2023To examine the needs, perceptions and influencing factors according to former adult intensive care unit patients and relatives with regard to family participation in...
OBJECTIVES
To examine the needs, perceptions and influencing factors according to former adult intensive care unit patients and relatives with regard to family participation in essential care in the unit.
RESEARCH DESIGN
A qualitative interpretive descriptive study using inductive thematic analysis.
SETTING
Twelve pairs of former Dutch patients and their relatives were interviewed within two months after the patient's discharge from the unit between December 2017 and April 2018.
FINDINGS
Four themes emerged: the family's history, the patient's condition, supporting the patient and supporting the relative. The family's history, in particular the relationship with the patient and former experience with care, determined the level of participation in essential care. The level of participation was also influenced by the patient's condition, more specifically level of consciousness, stability of the patient's situation and length of the patient's stay. The third theme, supporting the patient, related to presence/being able to 'be there' for the patient and a mostly positive attitude towards family participation. The last theme was supporting the relative, with three subthemes associated with relatives' needs and perceptions: (dis)comfort with participation in essential care, need for invitation and support, and concern about the possible strain experienced by relatives.
CONCLUSION
Supporting the patient and supporting the relative are reflecting the needs and perceptions of patients and relatives regarding family participation in essential care. Both the family's history and the patient's condition influence the relative's level of participation. Intensive care unit nurses and other healthcare providers could take these themes into account when encouraging family participation in essential care.
IMPLICATIONS FOR CLINICAL PRACTICE
Patients' and relatives' needs and perceptions of family participation in essential care in the intensive care unit vary. Family participation in essential care is influenced by the family's history and the patient's condition. Healthcare providers could take these findings into account when implementing family participation in essential care.
Topics: Adult; Humans; Consciousness; Health Personnel; Intensive Care Units; Patient Discharge; Patients
PubMed: 37598505
DOI: 10.1016/j.iccn.2023.103525 -
Systematic Reviews Apr 2019Despite the introduction of rapid response systems and early warning scores, clinical deterioration that is not recognised or responded to early enough prevails in acute...
BACKGROUND
Despite the introduction of rapid response systems and early warning scores, clinical deterioration that is not recognised or responded to early enough prevails in acute care areas. One intervention that aims to address this issue and that is gaining increased attention is patient- and family-initiated escalation of care schemes. Existing systematic review evidence to date has tended to focus on identifying the impact or effectiveness of these schemes in practice. However, they have not tended to focus on qualitative evidence to consider the experience of deterioration and the factors that may promote or hinder engagement with these schemes in the practice setting. This systematic review will address this gap. The aim of this review is to explore patients', relatives' and healthcare professionals' experiences of deterioration and their perceptions of the barriers or facilitators to patient and family-initiated escalation of care in acute adult hospital wards.
METHODS
We will search Medline, CINAHL, Embase and PsycINFO databases using free-text and MESH terms relating to deterioration, family-initiated rapid response, families, patients, healthcare staff, hospital and experiences. We will search grey literature and reference lists of included studies for further published and unpublished literature. All studies with a qualitative design or method will be included. Two reviewers will independently assess studies for eligibility, extract data and appraise the quality of included studies. Data will be synthesised using a thematic synthesis approach, and findings will be presented narratively.
DISCUSSION
Patient- and family-initiated escalation of care schemes have been developed and implemented in several countries including the United States, the United Kingdom and Australia, but there is limited evidence regarding patients' or families' perceptions of deterioration or the barriers and facilitators to using these schemes in practice, particularly in acute adult areas. This systematic review will provide evidence for the development of a patient and family escalation of care scheme that can be tested in a feasibility study.
SYSTEMATIC REVIEW REGISTRATION
PROSPERO CRD42018106952.
Topics: Clinical Deterioration; Family; Hospital Rapid Response Team; Humans; Patients; Qualitative Research; Systematic Reviews as Topic
PubMed: 30967158
DOI: 10.1186/s13643-019-1010-z -
PloS One 2020Patient-centered care (PCC) is an approach to involve patients in health care delivery, to contribute to quality of care, and to strengthen health systems...
INTRODUCTION
Patient-centered care (PCC) is an approach to involve patients in health care delivery, to contribute to quality of care, and to strengthen health systems responsiveness. This article aims to highlight patient perspectives by showcasing their perceptions of their experience of PCC at primary health facilities in two districts in Uganda.
METHODS
A mixed methods cross-sectional study was conducted in three public and two private primary health care facilities in rural eastern Uganda. In total, 300 patient exit survey questionnaires, 31 semi-structured Interviews (SSIs), 5 Focus Group Discussions (FGDs) and 5 feedback meetings were conducted. Data analysis was guided by a conceptual framework focusing on (1) understanding patients' health needs, preferences and expectations, (2) describing patients perceptions of their care experience according to five distinct PCC dimensions, and (3) reporting patient reported outcomes and their recommendations on how to improve quality of care.
RESULTS
Patient expectations were shaped by their access to the facility, costs incurred and perceived quality of care. Patients using public facilities reported doing so because of their proximity (78.3% in public PHCs versus 23.3% in private PHCs) and because of the free services availed. On the other hand, patients attending private facilities did so because of their perception of better quality of care (84.2% in private PHCs versus 21.7% in public PHCs). Patients expectations of quality care were expressed as the availability of medication, shorter waiting times, flexible facility opening hours and courteous health workers. Analysis of the 300 responses from patients interviewed on their perception of the care they received, pointed to higher normalized scores for two out of the five PCC dimensions considered: namely, exploration of the patient's health and illness experience, and the quality of the relationship between patient and health worker (range 62.1-78.4 out of 100). The qualitative analysis indicated that patients felt that communication with health workers was enhanced where there was trust and in case of positive past experiences. Patients however felt uncomfortable discussing psychological or family matters with health workers and found it difficult to make decisions when they did not fully understand the care provided. In terms of outcomes, our findings suggest that patient enablement was more sensitive than patient satisfaction in measuring the effect of interpersonal patient experience on patient reported outcomes.
DISCUSSION AND CONCLUSION
Our findings show that Ugandan patients have some understanding of PCC related concepts and express a demand for it. The results offer a starting point for small scale PCC interventions. However, we need to be cognizant of the challenges PCC implementation faces in resource constrained settings. Patients' expectations in terms of quality health care are still largely driven by biomedical and technical aspects. In addition, patients are largely unaware of their right to participate in the evaluation of health care. To mitigate these challenges, targeted health education focusing on patients' responsibilities and patient's rights are essential. Last but not least, all stakeholders must be involved in developing and validating methods to measure PCC.
Topics: Ambulatory Care Facilities; Cross-Sectional Studies; Focus Groups; Humans; Interviews as Topic; Patient-Centered Care; Patients; Quality of Health Care; Surveys and Questionnaires; Uganda
PubMed: 32730294
DOI: 10.1371/journal.pone.0236524 -
JAMA Network Open Oct 2021Although imaging has become a standard tool of modern medicine, its widespread use has been paralleled by an increasing cumulative radiation dose to patients despite...
IMPORTANCE
Although imaging has become a standard tool of modern medicine, its widespread use has been paralleled by an increasing cumulative radiation dose to patients despite technological advancements and campaigns calling for better awareness and minimization of unnecessary exposures.
OBJECTIVE
To assess patients' knowledge about medical radiation and related risks.
DESIGN, SETTING, AND PARTICIPANTS
A survey study of hospitals in Italy was conducted; all patients in waiting rooms for medical imaging procedures before undergoing imaging examinations at 16 teaching and nonteaching hospitals were approached to take the survey. The survey was performed from June 1, 2019, to May 31, 2020.
MAIN OUTCOMES AND MEASURES
Survey respondents' basic knowledge of ionizing radiation levels and health risks, earlier imaging tests performed, and information and communication about radiation protection issues.
RESULTS
Among 3039 patients invited to participate, the response rate was 94.3% (n = 2866). Participants included 1531 women (53.4%); mean (SD) age was 44.9 (17.3) years. Of the 2866 participants, 1529 (53.3%) were aware of the existence of natural sources of ionizing radiation. Mammography (1101 [38.4%]) and magnetic resonance imaging (1231 [43.0%]) were categorized as radiation-based imaging modalities. More than half of the 2866 patients (1579 [55.1%]; P = .03) did not know that chest computed tomography delivers a larger dose of radiation than chest radiography, and only 1499 (52.3%) knew that radiation can be emitted after nuclear medicine examinations (P = .004). A total of 667 patients (23.3%) believed that radiation risks were unrelated to age, 1273 (44.4%) deemed their knowledge about radiation risks inadequate, and 2305 (80.4%) preferred to be informed about radiation risks by medical staff. A better knowledge of radiation issues was associated with receiving information from health care professionals (odds ratio [OR], 1.71; 95% CI, 1.43-2.03; P < .001) and having a higher educational level (intermediate vs low: OR, 1.48; 95% CI, 1.17-1.88; P < .001; high vs low: OR, 2.68; 95% CI, 2.09-3.43; P < .001).
CONCLUSIONS AND RELEVANCE
The results of this survey suggest that patients undergoing medical imaging procedures have overall limited knowledge about medical radiation. Intervention to achieve better patient awareness of radiation risks related to medical exposures may be beneficial.
Topics: Adult; Female; Health Knowledge, Attitudes, Practice; Humans; Italy; Male; Middle Aged; Patients; Perception; Radiation Exposure; Radiation, Ionizing; Surveys and Questionnaires
PubMed: 34643721
DOI: 10.1001/jamanetworkopen.2021.28561 -
A Hadoop-Based Platform for Patient Classification and Disease Diagnosis in Healthcare Applications.Sensors (Basel, Switzerland) Mar 2020Nowadays, the increasing number of patients accompanied with the emergence of new symptoms and diseases makes heath monitoring and assessment a complicated task for...
Nowadays, the increasing number of patients accompanied with the emergence of new symptoms and diseases makes heath monitoring and assessment a complicated task for medical staff and hospitals. Indeed, the processing of big and heterogeneous data collected by biomedical sensors along with the need of patients' classification and disease diagnosis become major challenges for several health-based sensing applications. Thus, the combination between remote sensing devices and the big data technologies have been proven as an efficient and low cost solution for healthcare applications. In this paper, we propose a robust big data analytics platform for real time patient monitoring and decision making to help both hospital and medical staff. The proposed platform relies on big data technologies and data analysis techniques and consists of four layers: real time patient monitoring, real time decision and data storage, patient classification and disease diagnosis, and data retrieval and visualization. To evaluate the performance of our platform, we implemented our platform based on the Hadoop ecosystem and we applied the proposed algorithms over real health data. The obtained results show the effectiveness of our platform in terms of efficiently performing patient classification and disease diagnosis in healthcare applications.
Topics: Algorithms; Big Data; Biosensing Techniques; Decision Making; Delivery of Health Care; Diagnostic Techniques and Procedures; Humans; Information Storage and Retrieval; Monitoring, Physiologic; Patients; Remote Sensing Technology
PubMed: 32235657
DOI: 10.3390/s20071931 -
Journal of General Internal Medicine Feb 2015
Topics: Female; Friends; Humans; Patients; Physician-Patient Relations
PubMed: 25361686
DOI: 10.1007/s11606-014-3079-3 -
Embedding Patient-Centricity by Collaborating with Patients to Transform the Rare Disease Ecosystem.Pharmaceutical Medicine Jul 2023What is patient-centricity? In some contexts, it has been associated with targeting therapies based on biomarkers or enabling healthcare access. There has been a surge...
What is patient-centricity? In some contexts, it has been associated with targeting therapies based on biomarkers or enabling healthcare access. There has been a surge in patient-centricity publications, and in many cases for the biopharmaceutical industry, patient engagement is used to endorse pre-held assumptions at a specific moment in time. Rarely is patient engagement used to drive business decisions. Here we describe an innovative partnership between Alexion, AstraZeneca Rare Disease and patients that allowed a deeper understanding of the biopharmaceutical stakeholder ecosystem and an empathic understanding of each patient's and caregiver's lived experience. Alexion's decision to build patient-centricity frameworks resulted in the formation of two unique organisation design platforms: STAR (Solutions To Accelerate Results for patients) and LEAP (Learn, Evolve, Activate and deliver for Patients) Immersive Simulations. These interconnected programmes required cultural, global, and organisational shifts. STAR generates global patient insights that are embedded in drug candidate and product strategies while helping to establish enterprise foundational alignment and external stakeholder engagement plans. LEAP Immersive Simulations produce detailed country-level patient and stakeholder insights that contribute to an empathetic understanding of each patient's lived experience, support country medicine launches and provide ideas to have a positive impact along the patient journey. Combined, they deliver integrated, cross-functional insights, patient-centric decision making, an aligned patient journey, and 360° stakeholder activation. Throughout these processes, the patient is empowered to dictate their needs and validate the proposed solutions. This is not a patient engagement survey. This is a partnership where the patient co-authors strategies and solutions.
Topics: Humans; Ecosystem; Rare Diseases; Patients; Health Services Accessibility; Biological Products
PubMed: 37142887
DOI: 10.1007/s40290-023-00474-y