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Health Care from Patients' Perspective

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

Deadline for manuscript submissions: closed (1 July 2022) | Viewed by 45456

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A printed edition of this Special Issue is available here.

Special Issue 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, 

We are 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://0-www-mdpi-com.brum.beds.ac.uk/journal/ijerph.

This IJERPH Special Issue on “Health Care from Patients’ Perspective” will focus on patients’ perspective as experts, on their challenges and health-care-related experiences embedded in a biopsychosocial framework. Research on experiences will build the core of this issue. They will not only provide insights into complex health care situations and ethical-related questions but also into patient-centered problems as a possible starting point for improving the health care system and/or policy. It will also include an interprofessional perspective on patients’ health care providers, relatives or significant others.  

This Special Issue offers an opportunity to publish high-quality papers on health and illness narratives to health-related topics based on qualitative research, including participatory research methodology from the whole spectrum of care, such as health promotion, prevention, chronic diseases, rehabilitation or palliative care. We also welcome high-quality systematic and scoping reviews related to these matters. We 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, midwifes, medicine, and other professions.

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
  • participatory research
  • biopsychosocial perspective

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Published Papers (19 papers)

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22 pages, 3625 KiB  
Article
First Insights into Barriers and Facilitators from the Perspective of Persons with Multiple Sclerosis: A Multiple Case Study
by Joelle Ott, Nikola Biller-Andorno and Andrea Glässel
Int. J. Environ. Res. Public Health 2022, 19(17), 10733; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph191710733 - 29 Aug 2022
Cited by 1 | Viewed by 1390
Abstract
Multiple Sclerosis (MS) is a complex, lifelong disease. Its effects span across different areas of life and vary strongly. In Switzerland, there is an intense discussion on how to optimize quality of care and patient safety. Patients should be more involved in the [...] Read more.
Multiple Sclerosis (MS) is a complex, lifelong disease. Its effects span across different areas of life and vary strongly. In Switzerland, there is an intense discussion on how to optimize quality of care and patient safety. Patients should be more involved in the management of health care to improve the quality of care from the patient’s perspective and form a more comprehensive perspective. This multiple-case study explores the question of how persons with MS experience and describe functioning related barriers, facilitating factors, and ethically relevant conflicts. To address this from a comprehensive perspective, the MS core set of the International Classification for Functioning, Disability, and Health (ICF) is used as theoretical framework. To explore barriers, facilitators, and relevant ethical issues, different narrative sources were used for thematic analysis and ICF coding: (a) MS transcripts from DIPEx interviews and (b) an autobiographical book of persons living with MS. Insights that were meaningful for daily practice and education were identified: (a) understanding the importance of environmental circumstances based on narrative sources; (b) understanding the importance of a person’s individual life situation, and the ability to switch perspectives in the medical field; (c) respect for PwMS’ individuality in health care settings; (d) creating meaningful relationships for disease management and treatment, as well as building trust. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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24 pages, 1373 KiB  
Article
Cultural Differences in Patients’ Preferences for Paternalism: Comparing Mexican and American Patients’ Preferences for and Experiences with Physician Paternalism and Patient Autonomy
by Gregory A. Thompson, Jonathan Segura, Dianne Cruz, Cassie Arnita and Leeann H. Whiffen
Int. J. Environ. Res. Public Health 2022, 19(17), 10663; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph191710663 - 26 Aug 2022
Cited by 4 | Viewed by 1845
Abstract
Following up on previous research demonstrating the high level of care realized by a paternalistic Mexican physician, the present research further explored the hypothesis that there are cultural differences in preferences for and experiences with physician paternalism vs. patient autonomy in White American [...] Read more.
Following up on previous research demonstrating the high level of care realized by a paternalistic Mexican physician, the present research further explored the hypothesis that there are cultural differences in preferences for and experiences with physician paternalism vs. patient autonomy in White American culture as compared with Mexican culture. In this research, we interviewed sixty (60) people including twenty (20) Mexican, twenty (20) Mexican American, and twenty (20) White American respondents. We asked these patients about their experiences with and attitudes towards paternalism and patient autonomy in healthcare interactions. With some caveats, our data showed strong support for both hypotheses while also suggesting a high level of care can be realized by paternalistic physicians when “paternalism” is understood in a cultural context. We close with a brief consideration of the implications of these findings. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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13 pages, 719 KiB  
Article
Interprofessional Collaboration in Fall Prevention: Insights from a Qualitative Study
by Isabel Baumann, Frank Wieber, Thomas Volken, Peter Rüesch and Andrea Glässel
Int. J. Environ. Res. Public Health 2022, 19(17), 10477; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph191710477 - 23 Aug 2022
Cited by 3 | Viewed by 2912
Abstract
(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 [...] Read more.
(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. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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25 pages, 5060 KiB  
Article
“Back into Life—With a Power Wheelchair”: Learning from People with Severe Stroke through a Participatory Photovoice Study in a Metropolitan Area in Germany
by Tabea Böttger, Silke Dennhardt, Julia Knape and Ulrike Marotzki
Int. J. Environ. Res. Public Health 2022, 19(17), 10465; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph191710465 - 23 Aug 2022
Cited by 4 | Viewed by 1877
Abstract
Severe stroke leads to permanent changes in everyday life. Many stroke survivors depend on support in community mobility (CM). This leads to restrictions and limited social participation. A power wheelchair (PWC) can enable independent CM and reduce such restrictions. This participatory study focused [...] Read more.
Severe stroke leads to permanent changes in everyday life. Many stroke survivors depend on support in community mobility (CM). This leads to restrictions and limited social participation. A power wheelchair (PWC) can enable independent CM and reduce such restrictions. This participatory study focused on how people with severe stroke experience their CM in a PWC in Berlin/Germany and what changes they want to initiate. A research team of five severe stroke survivors and two occupational therapists examined the question using photovoice. Stroke survivors took photos of their environment, presented, discussed, and analyzed them at group meetings to identify themes, and disseminated their findings at exhibitions and congresses. The photos emphasize the significance of and unique relationship to the PWC for the self-determined expression of personal freedom. As a complex, individualized construct, CM requires an accessible environment and diverse planning strategies by PWC users to arrive at their destination and overcome suddenly occurring obstacles. Desired changes stress CM independent of external help, increased social esteem, and active involvement in the provision of assistive devices. Voices of severe stroke survivors need to be heard more in healthcare and research to ensure the possibility of equal social participation. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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10 pages, 333 KiB  
Article
How Is It to Live with Diabetes Mellitus? The Voices of the Diabetes Mellitus Clients
by Charity Ngoatle and Tebogo Maria Mothiba
Int. J. Environ. Res. Public Health 2022, 19(15), 9638; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19159638 - 05 Aug 2022
Cited by 2 | Viewed by 1370
Abstract
Background: Diabetes mellitus is described as a chronic disease resulting from failure of the pancreas to generate enough insulin or inability of the body to efficiently utilize the insulin it generates. Diabetes clients must adjust their lives to live healthy with the [...] Read more.
Background: Diabetes mellitus is described as a chronic disease resulting from failure of the pancreas to generate enough insulin or inability of the body to efficiently utilize the insulin it generates. Diabetes clients must adjust their lives to live healthy with the diseases for the rest of their lives. Optimizing diabetic knowledge and awareness among people living with diabetes will yield better health outcomes. This study seeks to investigate the knowledge, practices, and challenges of diabetes mellitus clients regarding management of the disease at selected clinics in the Capricorn District of Limpopo Province, South Africa. Methods: This study used a qualitative research approach and a phenomenological research design. A purposive sampling method was used to acquire the 18 participants for this study. Semi-structured interviews with a guide were used to collect data. Tesch’s coding method was employed for data analysis. Results: The study findings revealed that there are comparable explanations of what it means to follow medication instructions by diabetes mellitus clients, and challenges living with DM. The findings also indicate that there are problems related to conceptualization of medication instructions among diabetes clients. Conclusion: This study indicated that diabetes mellitus clients have poor knowledge regarding management of the disease and its process, and problems related to medication instructions. Therefore, proper teaching of clients and guidance regarding diabetes and its management are required to improve compliance and delay of long-term complications. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
25 pages, 395 KiB  
Article
“What Do You Need? What Are You Experiencing?” Relationship Building and Power Dynamics in Participatory Research Projects: Critical Self-Reflections of Researchers
by Doris Arnold, Andrea Glässel, Tabea Böttger, Navina Sarma, Andreas Bethmann and Petra Narimani
Int. J. Environ. Res. Public Health 2022, 19(15), 9336; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19159336 - 30 Jul 2022
Cited by 3 | Viewed by 3055
Abstract
Participatory approaches create opportunities for cooperation, building relationships, gaining knowledge, rethinking, and eventually changing power structures. From an international perspective, the article looks at the historical development of different participatory approaches in which building relationships and managing the balance of power between persons [...] Read more.
Participatory approaches create opportunities for cooperation, building relationships, gaining knowledge, rethinking, and eventually changing power structures. From an international perspective, the article looks at the historical development of different participatory approaches in which building relationships and managing the balance of power between persons engaged in participatory research are central. The authors present and critically reflect on four research projects to show how they understood and implemented participatory research in different ways and what they have learned from their respective experiences. The “PaSuMi” project worked in the context of addiction prevention with migrants and provides a glimpse into different contexts of participatory research. The initiator of the study “Back into life—with a power wheelchair” works with post-stroke individuals who use the assistive device in community mobility and reflects on the shifting and intertwining roles of participants. In the research project “Workshops for implementation of expanded community nursing”, new professional roles for nurses in community nursing were developed; here limitations to participation and ways to deal with them are illustrated. Finally, the “DIPEx” project deals with challenges of enabling participation of persons with multiple sclerosis via narrative interviews on the experience of health and illness. All examples underline the necessity of a permanent reflection on relationships and power dynamics in participatory research processes. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
8 pages, 543 KiB  
Article
Examining the Feasibility of an Application-Based Patient-Reported Outcome Monitoring for Breast Cancer Patients: A Pretest for the PRO B Study
by Anna Maria Hage, Pimrapat Gebert, Friedrich Kühn, Therese Pross, Ulrike Grittner and Maria Margarete Karsten
Int. J. Environ. Res. Public Health 2022, 19(14), 8284; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19148284 - 07 Jul 2022
Viewed by 1271
Abstract
In preparation for the PRO B study which aims to examine the effects of an app-based intensified patient-reported outcome (PRO) monitoring for metastatic breast cancer patients, prior assessment of its feasibility was carried out. Sixteen breast cancer patients visiting the breast cancer unit [...] Read more.
In preparation for the PRO B study which aims to examine the effects of an app-based intensified patient-reported outcome (PRO) monitoring for metastatic breast cancer patients, prior assessment of its feasibility was carried out. Sixteen breast cancer patients visiting the breast cancer unit at Charité were recruited and downloaded an app connected to an ePRO system. They received electronic questionnaires on two occasions (baseline and the following week) and were subsequently contacted for a semi-structured phone interview for evaluation. Eleven participants answered at least one questionnaire. Some participants did not receive any or only a part of the questionnaires due to technical problems with the app. Participants who completed the evaluation questionnaire (n = 6) were overall satisfied with the weekly PRO questionnaire. All interviewed (n = 11) participants thought it was feasible to answer the PRO questionnaires on a weekly basis for one year, as planned in the PRO B study. The pretest revealed a need for major technical adjustments to the app because push notifications about the receipt of new questionnaires were not displayed on some smartphone models. Due to the low number of participants, generalization of the findings is limited to our specific context and study. Nevertheless, we could conclude that if technical aspects of the app were improved, the PRO B study could be implemented as planned. The ePRO questionnaire was considered feasible and adequate from the patients’ perspectives. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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29 pages, 1985 KiB  
Article
Assessing Patient Experience and Attitude: BSC-PATIENT Development, Translation, and Psychometric Evaluation—A Cross-Sectional Study
by Faten Amer, Sahar Hammoud, David Onchonga, Abdulsalam Alkaiyat, Abdulnaser Nour, Dóra Endrei and Imre Boncz
Int. J. Environ. Res. Public Health 2022, 19(12), 7149; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19127149 - 10 Jun 2022
Cited by 5 | Viewed by 2844 | Correction
Abstract
Health care organizations (HCO) did not consider engaging patients in balanced scorecard (BSC) implementations to evaluate their performance. This paper aims to develop an instrument to engage patients in assessing BSC perspectives (BSC-PATIENT) and customize it for Palestinian hospitals. Two panels of experts [...] Read more.
Health care organizations (HCO) did not consider engaging patients in balanced scorecard (BSC) implementations to evaluate their performance. This paper aims to develop an instrument to engage patients in assessing BSC perspectives (BSC-PATIENT) and customize it for Palestinian hospitals. Two panels of experts participated in the item generation of BSC-PATIENT. Translation was performed based on guidelines. Pretesting was performed for 30 patients at one hospital. Then, 1000 patients were recruited at 14 hospitals between January and October 2021. Construct validity was tested through exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Additionally, the composite reliability (CR), interitem correlation (IIC), and corrected item total correlation (CITC) were assessed to find redundant and low correlated items. As a result, the scales had a highly adequate model fit in the EFA and CFA. The final best fit model in CFA comprised ten constructs with 36 items. In conclusion, BSC-PATIENT is the first self-administered questionnaire specifically developed to engage patients in BSC and will allow future researchers to evaluate the impact of patient experience on attitudes toward BSC perspectives, as well as to compare the differences based on patient and hospital characteristics. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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24 pages, 2315 KiB  
Article
Preventive Counseling in Routine Prenatal Care—A Qualitative Study of Pregnant Women’s Perspectives on a Lifestyle Intervention, Contrasted with the Experiences of Healthcare Providers
by Laura Lorenz, Franziska Krebs, Farah Nawabi, Adrienne Alayli and Stephanie Stock
Int. J. Environ. Res. Public Health 2022, 19(10), 6122; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19106122 - 18 May 2022
Cited by 3 | Viewed by 1761
Abstract
Maternal lifestyle during pregnancy and excessive gestational weight gain can influence maternal and infant short and long-term health. As part of the GeMuKi intervention, gynecologists and midwives provide lifestyle counseling to pregnant women during routine check-up visits. This study aims to understand the [...] Read more.
Maternal lifestyle during pregnancy and excessive gestational weight gain can influence maternal and infant short and long-term health. As part of the GeMuKi intervention, gynecologists and midwives provide lifestyle counseling to pregnant women during routine check-up visits. This study aims to understand the needs and experiences of participating pregnant women and to what extent their perspectives correspond to the experiences of healthcare providers. Semi-structured interviews were conducted with 12 pregnant women and 13 multi-professional healthcare providers, and were analyzed using qualitative content analysis. All interviewees rated routine check-up visits as a good setting in which to focus on lifestyle topics. Women in their first pregnancies had a great need to talk about lifestyle topics. None of the participants were aware of the link between gestational weight gain and maternal and infant health. The healthcare providers interviewed attributed varying relevance regarding the issue of weight gain and, accordingly, provided inconsistent counseling. The pregnant women expressed dissatisfaction regarding the multi-professional collaboration. The results demonstrate a need for strategies to improve multi-professional collaboration. In addition, health care providers should be trained to use sensitive techniques to inform pregnant women about the link between gestational weight gain and maternal and infant health. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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13 pages, 338 KiB  
Article
Evaluating the Effect of Kaftrio on Perspectives of Health and Wellbeing in Individuals with Cystic Fibrosis
by Sean A. Aspinall, Kelly A. Mackintosh, Denise M. Hill, Bethany Cope and Melitta A. McNarry
Int. J. Environ. Res. Public Health 2022, 19(10), 6114; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19106114 - 17 May 2022
Cited by 9 | Viewed by 4071
Abstract
Background: Modulator therapy represents a significant step forward in CF care and is expected to have a significant impact on the health and mortality of many individuals with CF. Studies have predominantly explored the physiological effects of modulator therapy on clinical outcomes, with [...] Read more.
Background: Modulator therapy represents a significant step forward in CF care and is expected to have a significant impact on the health and mortality of many individuals with CF. Studies have predominantly explored the physiological effects of modulator therapy on clinical outcomes, with little consideration of the individual lived experience of modulator therapy among adults with Cystic Fibrosis. Methods: To explore this, semi-structured interviews were conducted with 12 individuals currently taking Kaftrio, which were subsequently thematically analysed. Results: Three overarching themes were identified: (i) positive perception of Kaftrio, (ii) negative perception of Kaftrio, and (iii) the relationships with the clinical team. The experience of modulator therapy should be recognised as being unique to the individual, with perceptions of illness, self-identity, and outcomes strongly dictating the lived experience. Conclusions: There is a consensus that, while for many, the quality of life is evidently increased through the use of Kaftrio, this is not without its own challenges. This highlights the need for both individuals with CF and their clinical teams to learn to navigate this new disease landscape. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
13 pages, 955 KiB  
Article
Patient Navigation—Who Needs What? Awareness of Patient Navigators and Ranking of Their Tasks in the General Population in Germany
by Susanne Schnitzer, Raphael Kohl, Hella Fügemann, Kathrin Gödde, Judith Stumm, Fabian Engelmann, Ulrike Grittner and Nina Rieckmann
Int. J. Environ. Res. Public Health 2022, 19(5), 2846; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19052846 - 01 Mar 2022
Cited by 3 | Viewed by 1990
Abstract
The aim of the present study was to investigate the awareness of patient navigation (PN) in the general population in Germany and to assess which navigator tasks are considered most important. The analysis drew on a 2019 nationwide telephone survey of 6110 adults. [...] Read more.
The aim of the present study was to investigate the awareness of patient navigation (PN) in the general population in Germany and to assess which navigator tasks are considered most important. The analysis drew on a 2019 nationwide telephone survey of 6110 adults. We compared rankings of emotional support, administrative support and information among respondents with and without experience of patient navigation. One-fifth of the sample reported having heard of PNs; 13% of this group already had experience with PN. In both groups, the majority (>47%) considered assistance with applications to be most important. This was particularly the case among younger adults and those with a chronic disease. Within the inexperienced group, higher educated people had higher odds of ranking provision of information as most important for them, whereas women and those without a partner had higher odds of ranking emotional support as the most important task. This study shows that the majority of people predominantly expect PN services to offer administrative support, irrespective of their socioeconomic and health status. Whether these expectations are met by the diverse existing PN programs, which often have a strong focus on other tasks (e.g., increasing health literacy), has yet to be evaluated. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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15 pages, 356 KiB  
Article
What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again
by Barbara Groot, Annyk Haveman, Mireille Buree, Ruud van Zuijlen, Juliette van Zuijlen and Tineke Abma
Int. J. Environ. Res. Public Health 2022, 19(4), 1927; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19041927 - 09 Feb 2022
Cited by 5 | Viewed by 1801
Abstract
Health researchers increasingly work with patients in a participatory fashion. Active patient involvement throughout the research process can provide epistemic justice to patients who have often only had an informant role in traditional health research. This study aims to conduct participatory research on [...] Read more.
Health researchers increasingly work with patients in a participatory fashion. Active patient involvement throughout the research process can provide epistemic justice to patients who have often only had an informant role in traditional health research. This study aims to conduct participatory research on patient experiences to create a solid research agenda with patients and discuss it with relevant stakeholders. We followed a participatory research design in 18 sub-studies, including interviews and group sessions (n = 404 patients), and dialogue sessions (n = 367 professionals and directors in healthcare and social work, municipality civil servants, and funding agencies) on patient experiences with psychiatric care, community care, daycare, public health, and social work. Findings from the eight-year study show that four priorities stood out: attention for misuse of power and abuse; meaningful participation; non-human assistance, and peer support. Moreover, that: (1) patients, based on their experiences, prioritize different topics than experts; (2) most topics are trans-diagnostic and point to the value of a cross-disability approach; and (3) the priorities of patients are all too easily dismissed and require ethics work to prevent epistemic injustice. Long-term investment in a transdisciplinary community of practice offers a solid basis for addressing patient-centered topics and may impact the quality of life of people living with chronic illness, disability, or vulnerability. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
16 pages, 335 KiB  
Article
“I Had to Rediscover Our Healthy Food”: An Indigenous Perspective on Coping with Type 2 Diabetes Mellitus
by Maya Maor, Moflah Ataika, Pesach Shvartzman and Maya Lavie Ajayi
Int. J. Environ. Res. Public Health 2022, 19(1), 159; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19010159 - 24 Dec 2021
Cited by 3 | Viewed by 2637
Abstract
Type 2 Diabetes Mellitus (T2DM) is disproportionally prevalent among the Bedouin minority in Israel, with especially poor treatment outcomes compared to other indigenous groups. This study uses the perspective of the Bedouins themselves to explore the distinct challenges they face, as well as [...] Read more.
Type 2 Diabetes Mellitus (T2DM) is disproportionally prevalent among the Bedouin minority in Israel, with especially poor treatment outcomes compared to other indigenous groups. This study uses the perspective of the Bedouins themselves to explore the distinct challenges they face, as well as their coping strategies. The study is based on an interpretive interactionist analysis of 49 semi-structured interviews with Bedouin men and women. The findings of the analysis include three themes. First, physical inequality: the Bedouin community’s way of coping is mediated by the transition to a semi-urban lifestyle under stressful conditions that include the experience of land dispossession and the rupture of caring relationships. Second, social inequality: they experience an inaccessibility to healthcare due to economic problems and a lack of suitable informational resources. Third, unique resources for coping with T2DM: interviewees use elements of local culture, such as religious practices or small enclaves of traditional lifestyles, to actively cope with T2DM. This study suggests that there is a need to expand the concept of active coping to include indigenous culture-based ways of coping (successfully) with chronic illness. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
13 pages, 1117 KiB  
Article
National Profile of Caregivers’ Perspectives on Autism Spectrum Disorder Screening and Care in Primary Health Care: The Need for Autism Medical Home
by Sarah H. Al-Mazidi and Laila Y. Al-Ayadhi
Int. J. Environ. Res. Public Health 2021, 18(24), 13043; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph182413043 - 10 Dec 2021
Cited by 6 | Viewed by 3051
Abstract
Although autism spectrum disorder (ASD) is a common developmental disorder, primary healthcare providers show a deficit in providing early diagnosis. To understand parents’ experience and perspective in the diagnosis and intervention process of their children, a survey was deployed through social media to [...] Read more.
Although autism spectrum disorder (ASD) is a common developmental disorder, primary healthcare providers show a deficit in providing early diagnosis. To understand parents’ experience and perspective in the diagnosis and intervention process of their children, a survey was deployed through social media to parents’ with at least one child diagnosed with ASD. The survey included parents experience, satisfaction and perception in the diagnosis process and services provided for their children, stigma and type of support received. A total of 223 participants were enrolled. Although 62% of ASD patients were diagnosed by three years old, most diagnoses (66%) were non-physician initiated. Additionally, 40.8% of the parents reported that the services required for their child are available in their area of residence, but only 7.9% were satisfied with these services. Parents who received psychological support (9.9%) started early intervention, and their children have a better prognosis (p ≤ 0.005). Stigmatized parents were more likely to delay intervention (p ≤ 0.005). Parents’ perception is to have qualified healthcare and educational professionals experienced in ASD. Our findings suggest that a specialized family-centred medical home for ASD patients would significantly benefit ASD patients, increase parents’ satisfaction, reduce parents’ stress, and ease their children’s transition to adolescents. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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39 pages, 4923 KiB  
Article
Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers
by Yolanda María Chacón Gámez, Florian Brugger and Nikola Biller-Andorno
Int. J. Environ. Res. Public Health 2021, 18(18), 9516; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18189516 - 09 Sep 2021
Cited by 4 | Viewed by 2852
Abstract
Parkinson’s disease (PD) has a large impact on patients’ physical and mental health, which also greatly affects their family caregivers. Deep brain stimulation (DBS) has emerged as an effective treatment for PD, but different authors have expressed their concerns about the potential impact [...] Read more.
Parkinson’s disease (PD) has a large impact on patients’ physical and mental health, which also greatly affects their family caregivers. Deep brain stimulation (DBS) has emerged as an effective treatment for PD, but different authors have expressed their concerns about the potential impact of DBS on personality and identity. Our study aims at better understanding how patients and family caregivers experience life with PD and DBS, the impact of both on their personal and social lives, and their perception of the changes that have occurred as a result of the disease and the treatment. Our study applies a multimodal approach by means of narrative semi-structured interviews and drawings. Seven principal themes have been identified: “everyone’s Parkinson’s is different”, “changing as a person during the disease”, “going through Parkinson’s together”, “DBS improved my life”, “I am treated with DBS but I have Parkinson’s still”, “DBS is not perfect”, and “being different after DBS”. PD is perceived as an unpredictable and heterogeneous disease that changes from person to person, as does the effect of DBS. While DBS side-effects may have an impact on patients’ personality, behavior, and self-perception, PD symptoms and drug side-effects also have a great impact on these aspects. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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19 pages, 870 KiB  
Article
Validation and Adjustment of the Patient Experience Questionnaire (PEQ): A Regional Hospital Study in Norway
by Seth Ayisi Addo, Reidar Johan Mykletun and Espen Olsen
Int. J. Environ. Res. Public Health 2021, 18(13), 7141; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18137141 - 03 Jul 2021
Cited by 7 | Viewed by 2598
Abstract
This paper assesses the psychometric qualities of the Patient Experience Questionnaire (PEQ), thereby validating a patient-oriented measurement model in a hospital environment, and modifies the model based on empirical results. This study employed survey data gathered by the Norwegian Institute of Public Health [...] Read more.
This paper assesses the psychometric qualities of the Patient Experience Questionnaire (PEQ), thereby validating a patient-oriented measurement model in a hospital environment, and modifies the model based on empirical results. This study employed survey data gathered by the Norwegian Institute of Public Health from adult inpatients at somatic hospitals in the Health South-East RHF in Norway. The survey engaged 4603 patients out of 8381 from five main hospitals in the region. The study found that an eight-factor model of the PEQ generally showed good fitness to the data, but assessment of discriminant validity showed that this was not the optimal factor solution among four of the eight dimensions. After comparing models, the study proposed a model with a second-order factor for four of the factors: “nurse services”, “doctor services”, “information”, and “organization”, collectively named “treatment services”. The proposed model demonstrated good validity and reliability results. The results present theoretical and practical implications. The study recommends that inferential analyses on the PEQ should be done with the second-order factor. Furthermore, a revision of the PEQ is recommended subject to more confirmatory studies with larger samples in different regions. The study indicates a second-order factor structure for assessing and understanding patient experiences—a finding which has both theoretical and managerial implications. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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16 pages, 1421 KiB  
Article
A Swiss Health Care Professionals’ Perspective on the Meaning of Interprofessional Collaboration in Health Care of People with MS—A Focus Group Study
by Fabienne Schmid, Slavko Rogan and Andrea Glässel
Int. J. Environ. Res. Public Health 2021, 18(12), 6537; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18126537 - 17 Jun 2021
Cited by 6 | Viewed by 3023
Abstract
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) [...] Read more.
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. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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Review

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19 pages, 1862 KiB  
Review
Reframing Patient Experience Approaches and Methods to Achieve Patient-Centeredness in Healthcare: Scoping Review
by Eun-Jeong Kim, Inn-Chul Nam and Yoo-Ri Koo
Int. J. Environ. Res. Public Health 2022, 19(15), 9163; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19159163 - 27 Jul 2022
Cited by 2 | Viewed by 1676
Abstract
(1) There has been growing attention among healthcare researchers on new and innovative methodologies for improving patient experience. This study reviewed the approaches and methods used in current patient experience research by applying the perspective of design thinking to discuss practical methodologies for [...] Read more.
(1) There has been growing attention among healthcare researchers on new and innovative methodologies for improving patient experience. This study reviewed the approaches and methods used in current patient experience research by applying the perspective of design thinking to discuss practical methodologies for a patient-centered approach and creative problem-solving. (2) A scoping review was performed to identify research trends in healthcare. A four-stage design thinking process (“Discover”, “Define”, “Develop”, and “Deliver”) and five themes (“User focus”, “Problem-framing”, “Visualization”, “Experimentation”, and “Diversity”), characterizing the concept, were used for the analysis framework. (3) After reviewing 67 studies, the current studies show that the iterative process of divergent and convergent thinking is lacking, which is a core concept of design thinking, and it is necessary to employ an integrative methodology to actively apply collaborative, multidisciplinary, and creative attributes for a specific and tangible solution. (4) For creative problem-solving to improve patient experience, we should explore the possibilities of various solutions by an iterative process of divergent and convergent thinking. A concrete and visualized solution should be sought through active user interactions from various fields. For this, a specific methodology that allows users to collaborate by applying the integrative viewpoint of design thinking should be introduced. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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Other

Jump to: Research, Review

14 pages, 1499 KiB  
Protocol
Promoting Health and Behavior Change through Evidence-Based Landscape Interventions in Rural Communities: A Pilot Protocol
by Shan Jiang, Udday Datta and Christine Jones
Int. J. Environ. Res. Public Health 2022, 19(19), 12833; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph191912833 - 07 Oct 2022
Viewed by 1546
Abstract
Rural communities in the United States have many public health issues, including a high prevalence of physical inactivity, obesity, and higher risks for major non-communicable diseases. A lack of safe and convenient places to exercise could intensify healthy lifestyle disparities. Individually adapted physical [...] Read more.
Rural communities in the United States have many public health issues, including a high prevalence of physical inactivity, obesity, and higher risks for major non-communicable diseases. A lack of safe and convenient places to exercise could intensify healthy lifestyle disparities. Individually adapted physical activity prescriptions at the primary level of healthcare could play a role in behavior change for rural residents. Healthcare professionals and designers created the rural wellness hub concept, which integrates walking trails and therapeutic landscape features on the clinic site, to support patient physician-prescribed activities and treatments. This research protocol reports the design and implementation of the rural wellness hub at a clinic in Clay County, West Virginia. Following a participatory, evidence-based landscape intervention (EBLI) protocol, 58 user representatives (patient = 49; clinic employee = 9) participated in the four-phase protocol: (1) pre-design survey, (2) design and development, (3) post-design interview, and (4) post-occupancy evaluation. Survey and interview data from all phases were collected and analyzed. The preliminary results indicate that the redesigned clinic campus could promote several health programs among local communities, with the benefits of walking trails, in particular, highlighted. The rigorous EBLI protocol could serve as a template for rural communities that seek to develop similar healthcare intervention programs. Full article
(This article belongs to the Special Issue Health Care from Patients' Perspective)
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