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2nd Edition of Perspective Expanded: Healthcare from the Perspectives of Patients, Actors, and System Users

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Health Care Sciences".

Deadline for manuscript submissions: 1 August 2024 | Viewed by 11373

Special Issue Editor

Prof. Dr. Andrea Glässel

E-Mail Website1 Website2
Guest Editor
1. Institute of Biomedical Ethics and Medical History (IBMH), University of Zurich, 8006 Zürich, Switzerland
2. Institute of Public Health (IPH), School of Health Sciences, Zurich University of Applied Sciences (ZHAW), 8400 Winterthur, Switzerland
Interests: qualitative research; patient perspective; ICF research; interprofessional teaching; Delphi surveys
Special Issues, Collections and Topics in MDPI journals

Special Issue Information

Dear Colleagues,

I am organizing a Special Issue on “Health Care from Patients' Perspective” in the International Journal of Environmental Research and Public Health, a peer-reviewed journal that publishes articles and communications in the interdisciplinary area of environmental health sciences and public health. For detailed information on the journal, please refer to https://www.mdpi.com/journal/ijerph.

This IJERPH Special Issue on “Health Care from Patients' Perspective” will focus on patients’ perspectives as experts, on their challenges and healthcare-related experiences embedded in a biopsychosocial framework. Research on experiences regarding health, health care, but also illness will build the core of this issue by focussing on qualitative research methods mainly from patients’ perspectives and or their corresponding surroundings. They will not only provide insights into complex healthcare situations, ethical related questions but also into patient-centered challenges as a possible starting point for improving healthcare systems and or policy. An interprofessional perspective on health care providers, family members, or key caregivers of patients, clients, and users are most welcome. In addition, we are hoping for contributions from the medical humanities, and topics on community health including health literacy. 

This Special Issue offers an opportunity to publish high-quality papers on health and illness narratives to health-related topics based on qualitative research methods including participatory research methodology from the whole spectrum of care as health promotion, prevention, chronic diseases, rehabilitation, or palliative care. We also welcome high-quality systematic and scoping reviews, protocol papers, position statements related to these matters, short communications as well as discussion papers. I would be pleased if this Special Issue serves as a trigger for the provision of insightful data for the design of teaching relevant studies based on narratives that are implemented in study programs on health care professionals such as therapists, nurses, midwives, medicine and other professions.

You may choose our Joint Special Issue in Healthcare.

Prof. Dr. Andrea Glässel
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • patient experiences
  • illness narratives
  • chronic disease
  • health promotion
  • prevention
  • rehabilitation
  • qualitative research methods
  • participatory research
  • biopsychosocial perspective
  • user perspective

Related Special Issue

Published Papers (6 papers)

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Research

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26 pages, 670 KiB  
Article
Aneurysmal Subarachnoid Hemorrhage and Clinical Decision-Making: A Qualitative Pilot Study Exploring Perspectives of Those Directly Affected, Their Next of Kin, and Treating Clinicians
by Beatrix Göcking, Nikola Biller-Andorno, Giovanna Brandi, Sophie Gloeckler and Andrea Glässel
Int. J. Environ. Res. Public Health 2023, 20(4), 3187; https://doi.org/10.3390/ijerph20043187 - 11 Feb 2023
Cited by 1 | Viewed by 1716
Abstract
Background: Exploring the experience and impact of aneurysmal subarachnoid hemorrhage (aSAH) from three perspectives, that of those directly affected (AFs), their next of kin (NoK), and treating clinicians, is a way to support and empower others to make informed medical decisions. Methods: In [...] Read more.
Background: Exploring the experience and impact of aneurysmal subarachnoid hemorrhage (aSAH) from three perspectives, that of those directly affected (AFs), their next of kin (NoK), and treating clinicians, is a way to support and empower others to make informed medical decisions. Methods: In a Swiss neurosurgical intensive care unit (ICU), eleven semi-structured interviews were conducted as part of a Database of Individual Patient Experiences (DIPEx) pilot project and thematically analyzed. Interviews were held with two clinicians, five people experiencing aSAH, and four NoK 14–21 months after the bleeding event. Results: Qualitative analysis revealed five main themes from the perspective of clinicians: emergency care, diagnosis and treatment, outcomes, everyday life in the ICU, and decision-making; seven main themes were identified for AFs and NoK: the experience of the aSAH, diagnosis and treatment, outcomes, impact on loved ones, identity, faith, religion and spirituality, and decision-making. Perspectives on decision-making were compared, and, whereas clinicians tended to focus their attention on determining treatment, AFs and NoK valued participation in shared decision-making processes. Conclusions: Overall, aSAH was perceived as a life-threatening event with various challenges depending on severity. The results suggest the need for tools that aid decision-making and better prepare AFs and NoK using accessible means and at an early stage. Full article
(This article belongs to the Special Issue 2nd Edition of Perspective Expanded: Healthcare from the Perspectives of Patients, Actors, and System Users)
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20 pages, 2207 KiB  
Article
Evaluating the Effects of Capacity Building Initiatives and Primary Care Networks in Singapore: Outcome Harvesting of System Changes to Chronic Disease Care Delivery
by Andrew Teik Hong Chen, Gerald Choon-Huat Koh, Ngan Phoon Fong, Jeremy Fung Yen Lim and Zoe Jane-Lara Hildon
Int. J. Environ. Res. Public Health 2023, 20(3), 2192; https://doi.org/10.3390/ijerph20032192 - 25 Jan 2023
Viewed by 2029
Abstract
The high tertiary healthcare utilisation in Singapore due to an ageing population and increasing chronic disease load has resulted in the establishment of primary care networks (PCNs) for private general practitioners (GPs) to provide team-based, community care for chronic diseases. A total of [...] Read more.
The high tertiary healthcare utilisation in Singapore due to an ageing population and increasing chronic disease load has resulted in the establishment of primary care networks (PCNs) for private general practitioners (GPs) to provide team-based, community care for chronic diseases. A total of 22 PCN leaders and programme managers from 10 PCNs participated in online group discussions and a survey. Outcome harvesting was used to retrospectively link the intended and unintended outcomes to the programme initiatives and intermediate results (IRs). The outcomes were generated, refined and verified before shortlisting for analysis. About 134 positive and 22 negative PCN outcomes were observed since inception in 2018. By establishing PCN headquarters and entrusting PCN leaders with the autonomy to run these, as well as focusing policy direction on GP onboarding, GP engagements and clinical governance, the programme successfully harnessed the collective capabilities of GPs. Developments in the organisation (IR1) and monitoring and evaluation (IR4) were the top two contributors for positive and negative outcomes. Sustainable practice and policy changes represented 46% and 20% of the positive outcomes respectively. Sustainable positive outcomes were predominantly contributed by funding, clear programme policy direction and oversight. Conversely, most negative outcomes were due to the limited programme oversight especially in areas not covered by the programme policy. Full article
(This article belongs to the Special Issue 2nd Edition of Perspective Expanded: Healthcare from the Perspectives of Patients, Actors, and System Users)
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10 pages, 1544 KiB  
Article
A Novel Empowerment System for Patients Living with a Chronic Disease in a Precarious Context
by Rita Georges Nohra and Monique Rothan-Tondeur
Int. J. Environ. Res. Public Health 2023, 20(1), 601; https://doi.org/10.3390/ijerph20010601 - 29 Dec 2022
Cited by 2 | Viewed by 1855
Abstract
Nurses play an important role in the management of chronic diseases. Here, we discuss the components of a novel system aimed at empowering patients living with chronic diseases, such as chronic obstructive pulmonary disease (COPD), in a context of precariousness for patients and [...] Read more.
Nurses play an important role in the management of chronic diseases. Here, we discuss the components of a novel system aimed at empowering patients living with chronic diseases, such as chronic obstructive pulmonary disease (COPD), in a context of precariousness for patients and health personnel, including nurses. This project aimed to evaluate the impact of nursing consultation and remote monitoring on the quality of life in patients with COPD. Two essential elements were linked to promote patient empowerment, which included a network of relationships among the community, hospital, and academic institutions as well as the promotion, contextualization, and co-management of therapeutic education programs among patients. Our results are applicable to all countries with vulnerable populations. Full article
(This article belongs to the Special Issue 2nd Edition of Perspective Expanded: Healthcare from the Perspectives of Patients, Actors, and System Users)
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9 pages, 335 KiB  
Article
Communication of the Diagnosis of Spinal Muscular Atrophy in the Views of Patients and Family Members, a Qualitative Analysis
by Isabella Araujo Mota Fernandes, Renata Oliveira Almeida Menezes and Guilhermina Rego
Int. J. Environ. Res. Public Health 2022, 19(24), 16935; https://doi.org/10.3390/ijerph192416935 - 16 Dec 2022
Cited by 1 | Viewed by 1356
Abstract
Introduction: Communicating the diagnosis of a genetic and neurodegenerative disease, such as spinal muscular atrophy (SMA), requires a transmission centered on the patient and/or the family caregiver, ensuring autonomy to those involved and strengthening the doctor–patient relationship. Objective: Analyzing the communication of the [...] Read more.
Introduction: Communicating the diagnosis of a genetic and neurodegenerative disease, such as spinal muscular atrophy (SMA), requires a transmission centered on the patient and/or the family caregiver, ensuring autonomy to those involved and strengthening the doctor–patient relationship. Objective: Analyzing the communication of the SMA diagnosis from the perspective of patients and family members. Methods: This qualitative study was developed through semi-structured interviews, via teleconsultation. The analysis was developed by systematically condensing the answers and synthesizing them into four thematic axes (clarification of the diagnosis, communication of the prognosis, affective memory related to the event, and advice to physicians). Results and discussion: Twenty-nine patients with SMA and 28 family caregivers of people with this condition, from all regions of Brazil, reported that individualized, clear, honest, and welcoming communication, emphasizing positive aspects, in the presence of family members and with the possibility of continuous monitoring, was important to meeting their communication needs. A lack of empathy, monitoring and guidance, and estimating life expectancy resulted in negative experiences. Conclusions: The communication needs of patients and family members described during the clarification of the diagnosis and prognosis of SMA predominantly involve empathic factors related to the attitude of the attending physician throughout the evolution of the disease. Future research evaluating other neurodegenerative diseases and the development of research protocols are important to improving communication between physicians, patients, and family members. Full article
(This article belongs to the Special Issue 2nd Edition of Perspective Expanded: Healthcare from the Perspectives of Patients, Actors, and System Users)
18 pages, 603 KiB  
Article
Validation of a Nursing Workload Measurement Scale, Based on the Classification of Nursing Interventions, for Adult Hospitalization Units
by María Fuensanta Hellín Gil, María Dolores Roldán Valcárcel, Ana Myriam Seva Llor, Francisco Javier Ibáñez-López, Marzena Mikla and María José López Montesinos
Int. J. Environ. Res. Public Health 2022, 19(23), 15528; https://doi.org/10.3390/ijerph192315528 - 23 Nov 2022
Cited by 1 | Viewed by 2801
Abstract
We conducted validation of a scale to measure nursing workloads, previously designed using NIC interventions within the four nursing functions (patient care, teaching, management, and research). Methods: This is an analytical, descriptive, prospective, and observational study using qualitative methodology (focus groups and in-depth [...] Read more.
We conducted validation of a scale to measure nursing workloads, previously designed using NIC interventions within the four nursing functions (patient care, teaching, management, and research). Methods: This is an analytical, descriptive, prospective, and observational study using qualitative methodology (focus groups and in-depth interviews) with a quantitative and qualitative section (committee of experts and real application of the scale through a validation pilot and with multicentric application, including hospitalization units of internal medicine and surgery of four hospitals). Qualitative analysis was performed with Atlas.ti8 and quantitative analysis with R. Results: Qualitatively, all the participants agreed on the need to measure workloads in all nursing functions with standardized terminology. The expert committee found greater relevance (91.67%) in “prevention” and “health education” as well as consistency with the construct and adequate wording in 99% of the selected items. In the pilot test and multicenter application, the nurses spent more time on the caring dimension, in the morning shift, and on the items “self-care”, “medication”, “health education”, “care of invasive procedures”, “wounds care”, “comfort”, and “fluid therapy”. Cronbach’s alpha 0.727, composite reliability 0.685, AVE 0.099, and omega coefficient 0.704 were all acceptable. Construct validity: KMO 0.5 and Bartlett’s test were significant. Conclusions: The scale can be considered valid to measure nursing workloads, both qualitatively in obtaining the consensus of experts and health personnel and quantitatively, with acceptable reliability and validity superior to other similar scales. Full article
(This article belongs to the Special Issue 2nd Edition of Perspective Expanded: Healthcare from the Perspectives of Patients, Actors, and System Users)
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Review

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17 pages, 345 KiB  
Review
Do Quality Reviews Play a Role during the Implementation of Health Sciences Programmes? A Document Analysis Study
by Charity Ngoatle, Tebogo M. Mothiba and Modikana A. Ngoepe
Int. J. Environ. Res. Public Health 2022, 19(21), 13961; https://doi.org/10.3390/ijerph192113961 - 27 Oct 2022
Viewed by 940
Abstract
Background: A programme review is a process that assesses the status, efficacy, and advancement of academic programmes and aids in determining their future needs, priorities, and direction. The purpose of the academic programme review is to demonstrate that the programmehas appropriate quality assurance [...] Read more.
Background: A programme review is a process that assesses the status, efficacy, and advancement of academic programmes and aids in determining their future needs, priorities, and direction. The purpose of the academic programme review is to demonstrate that the programmehas appropriate quality assurance processes and procedures in place in accordance with the applicable established criteria and to offer ongoing guidance for the development of academic programmes to ensure that they remain responsive and relevant. The study, therefore, sought to investigate the role of quality reviews during the implementation of health sciences programmes at a rural University in Limpopo Province, South Africa. Methods: Data were collected using the document analysis review technique to assess the Self-Evaluation Review reports for three programmes in the faculty of health sciences. The study’s descriptive qualitative data were analysed using a thematic analysis approach in six stages. All-inclusive purposive sampling was used to select the documents for review. Results: Three health sciences programmes were reviewed; two of the programmes met the minimum standards whereas one needed improvement. The review showed inadequate staffing, poor student support, and inadequate marketing of the programmes among others. Conclusions: The study has shown that conducting a review is crucial for maintaining and enhancing quality provisioning of programmes. The quality gaps identified by the panellists while reviewing the programmes can be used to improve and enhance quality of the programmes to a higher level if properly implemented. Thus, quality review does play a significant role during the implementation of health sciences programmes. Full article
(This article belongs to the Special Issue 2nd Edition of Perspective Expanded: Healthcare from the Perspectives of Patients, Actors, and System Users)
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