This IJERPH special issue on "Health Care from the Patient's Perspective" focuses on the perspective of patients as experts, on their challenges and experiences with health care, embedded in a ...biopsychosocial framework. In doing so, the special issue offers contributions across the entire health and disease continuum from health promotion to rehabilitation and to the outpatient setting described from different perspectives on disease-related situations such as Parkinson's disease, stroke, or multiple sclerosis, diabetes mellitus, and others, to methodological highlights, with a focus on qualitative, but also participatory research as well as quantitative approaches. Experiential research forms the core of this issue. They will not only provide insights into complex health care situations and ethical issues, but also highlight patient-centered problems as a possible starting point for health system and/or policy improvement. It will also take an interprofessional perspective on patients' care providers, family members, or caregivers. We received 19 impressive and important contributions to healthcare that we encourage you to read.
Patient narratives are illustrative, individual accounts of patients' experiences with certain health conditions. Web-based patient narratives have become widely available on the internet and in ...social media, as part of electronically available patient decision aids or Web-based databases. In recent years, the role of patient narratives as a source of information, insight, and support for both health care users and providers has increasingly been emphasized. Although the potential impact of patient stories has high immediate plausibility, it is of interest to know if this impact can be captured in quantitative studies.
This review aimed to evaluate whether research-generated Web-based patient narratives have quantifiable risks or benefits for (potential) patients, relatives, or health care professionals.
We searched the following databases from August 2017 to March 2019: Medical Literature Analysis and Retrieval System Online, PsycInfo, Sociological Abstracts, Web of Science, and EMBASE. Titles and abstracts of the retrieved studies were reviewed and assessed for the inclusion and exclusion criteria. Papers were included if they studied the following: (1) (potential) patients, relatives, or health care professionals; (2) the effects of Web-based patient narratives that were generated scientifically (eg, through qualitative research methods); and (3) were quantitative studies. Furthermore, 2 authors independently performed an assessment of the quality of the included studies using a validated checklist.
Of 4226 documents, 17 studies met the inclusion criteria. The studies investigated 10 different sources of Web-based patient narratives. Sample sizes ranged from 23 to 2458. The mean score of the quality assessment was 82.6 (range 61-100). Effects regarding five different purposes were identified as follows: provide information, engage, model behavior, persuade, and comfort. We found positive effects in every category and negative effects in one category (persuade). Several of the reported effects are rather small or were identified under specific experimental conditions.
Patient narratives seem to be a promising means to support users in improving their understanding of certain health conditions and possibly to provide emotional support and have an impact on behavioral changes. There is limited evidence for beneficial effects on some outcomes. However, narratives are characterized by considerable heterogeneity and the investigated outcomes are hardly comparable with each other, which makes the overall judgment difficult. As there are numerous possible measures and purposes of narratives, quantifying the impact of Web-based patient narratives remains a challenge. Future research is needed to define the optimal standards for quantitative approaches to narrative-based interventions.
Multiple sclerosis (MS) is a chronic, inflammatory autoimmune disease of the central nervous system mainly of adults ranging from 20 to 45 years of age. The risk of developing MS is 50% higher in ...women than in men. Most people with MS (PwMS) experience a spectrum of symptoms such as spasticity, continence dysfunctions, fatigue, or neurobehavioral manifestations. Due to the complexity of MS and the variety of patient-centered needs, a comprehensive approach of interprofessional collaboration (IPC) of multiple health care professionals (HCP) is necessary. The aim of this qualitative study was to explore the meaning of IPC in the comprehensive care of PwMS from a HCP perspective. Focus groups (FG) with HCP were conducted, recorded, and transcribed verbatim. The sample contained HCP from three MS clinics in different phases of care and rehabilitation. Four main categories emerged: (a) experience with IPC, (b) relevant aspects for IPC in patients’ treatment, (c) differences in in- and outpatient settings, and (d) influence of patient perspective. IPC plays a crucial role in HCP perspective when treating PwMS, which can benefit from an IPC therapeutic approach because HCP work together in a patient-centered way. The inpatient setting of HCP strongly supports the implementation of IPC. This prerequisite does not exist in outpatient settings.
In recent years, patient narratives have attracted increasing attention as a valuable source of insights into the subjective experience of healthcare. This paper outlines a best-practice approach to ...the collection, analysis, and use of patient narratives, based on current literature and on the experience of developing the Swiss Database of Individual Patient Experiences (DIPEx). The DIPEx project aims to provide a systematic and methodologically rigorous collection of patient narratives on various health situations and topics. This paper presents and details the DIPEx approach as a current standard in the field, offering a comprehensive overview and discussing the potential uses and benefits of patient narratives: improve healthcare practice, empower patients and caregivers, help structure better communication in healthcare, and contribute to medical teaching and learning.
(1) Background and objective: to explore the experiences of Swiss health care providers involved in a community fall prevention pilot project on barriers and facilitations in interprofessional ...cooperation between 2016 and 2017 in three regions of Switzerland. (2) Methods: semi-structured interviews with health care providers assessed their perspective on the evaluation of jointly developed tools for reporting fall risk, continuous training of the health care providers, sensitizing media campaigns, and others. (3) Results: One of the project's strengths is the interprofessional continuous trainings. These trainings allowed the health care providers to extend their network of health care providers, which contributed to an improvement of fall prevention. Challenges of the project were that the standardization of the interprofessional collaboration required additional efforts. These efforts are time consuming and, for some categories of health care providers, not remunerated by the Swiss health care system. (4) Conclusions: On a micro and meso level, the results of the present study indicate that the involved health care providers strongly support interprofessional collaboration in fall prevention. However, time and financial constraints challenge the implementation. On a macro level, potential ways to strengthen interprofessional collaboration are a core element in fall prevention.
Background. During the past decade, virtual reality (VR) has become a new component in the treatment of patients after stroke. Therefore aims of the study were (a) to get an insight into experiences ...and expectations of physiotherapists and occupational therapists in using a VR training system and (b) to investigate relevant facilitators, barriers, and risks for implementing VR training in clinical practice. Methods. Three focus groups were conducted with occupational therapists and physiotherapists, specialised in rehabilitation of patients after stroke. All data were audio-recorded and transcribed verbatim. The study was analysed based on a phenomenological approach using qualitative content analysis. Results. After code refinements, a total number of 1289 codes emerged out of 1626 statements. Intercoder reliability increased from 53% to 91% until the last focus group. The final coding scheme included categories on a four-level hierarchy: first-level categories are (a) therapists and VR, (b) VR device, (c) patients and VR, and (d) future prospects and potential of VR developments. Conclusions. Results indicate that interprofessional collaboration is needed to develop future VR technology and to devise VR implementation strategies in clinical practice. In principal, VR technology devices were seen as supportive for a general health service model.
In the intensive care unit, it can be challenging to determine which interventions align with the patients' preferences since patients are often incapacitated and other sources, such as advance ...directives and surrogate input, are integral. Managing treatment decisions in this context requires a process of shared decision-making and a keen awareness of the preference-sensitive instances over the course of treatment. The present paper examines the need for the development of preference-sensitive decision timelines, and, taking aneurysmal subarachnoid hemorrhage as a use case, proposes a model of one such timeline to illustrate their potential form and value. First, the paper draws on an overview of relevant literature to demonstrate the need for better guidance to (a) aid clinicians in determining when to elicit patient preference, (b) support the drafting of advance directives, and (c) prepare surrogates for their role representing the will of an incapacitated patient in clinical decision-making. This first section emphasizes that highlighting when patient (or surrogate) input is necessary can contribute valuably to shared decision-making, especially in the context of intensive care, and can support advance care planning. As an illustration, the paper offers a model preference-sensitive decision timeline—whose generation was informed by existing guidelines and a series of interviews with patients, surrogates, and neuro-intensive care clinicians—for a use case of aneurysmal subarachnoid hemorrhage. In the last section, the paper offers reflections on how such timelines could be integrated into digital tools to aid shared decision-making.
Purpose: The extended international classification of functioning, disability and health (ICF) core set for stroke is an application of the ICF of the World Health Organisation (WHO) with the purpose ...to represent the typical spectrum of functioning of persons with stroke. The objective of the study was to add evidence to the validation of the extended ICF core set for stroke from the perspective of patients using focus groups to explore the aspects of functioning and health important to persons with stroke. Method: The sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. After qualitative data analysis, the resulting concepts were linked to ICF categories and compared to the categories included in the extended ICF core set for stroke. Results: Sixty patients participated in 15 focus groups. The content of 131 out of 166 ICF categories contained in the extended ICF core set for stroke was reported by the persons with stroke. The content of 31 additional categories that are not covered in the extended ICF core set for stroke was raised. Conclusions: The existing version of the extended ICF core set for stroke could be confirmed almost entirely from patient perspective.
Implications for Rehabilitation:
The extended ICF Core Set for stroke can be used to create a functioning profile for persons after stroke to identify problems and resources considering a client-centred approach.
This study shows which aspects of the environment of persons after stroke are relevant from the clients' perspective and should be integrated in the rehabilitation process.
This study provides a basis for the further development of the ICF, especially with regard to its update in relevant aspects from clients' perspective after stroke.
The "Extended ICF Core Set for stroke" is an application of the International Classification of Functioning, Disability and Health (ICF) and represents the typical spectrum of problems in functioning ...of people with stroke.
The objective of this study was to validate this ICF Core Set from the perspective of physical therapists.
Physical therapists experienced in stroke intervention were asked about their patients' problems and resources and about aspects of the environment that physical therapists treat in people with stroke in a 3-round electronic-mail survey using the Delphi technique. The responses were linked to the ICF. The degree of agreement was calculated using the kappa statistic.
One hundred twenty-five physical therapists from 24 countries named 4,793 problems treated by physical therapists in people with stroke. They identified 10 second-level ICF categories that currently are not represented in the Extended ICF Core Set for stroke. Twelve responses of the participants were linked to the ICF component personal factors, and 15 responses were not covered by the current version of the classification. The kappa coefficient for the linking agreement was 0.39 (95% bootstrapped confidence interval=0.34-0.41).
Two World Health Organization regions were not represented in the sample of physical therapists.
According to the physical therapists, the current version of the Extended ICF Core Set for stroke largely covers the types of problems that their interventions address. However, some aspects of functioning emerged that are not yet covered and may need further investigation.
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