Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges (Preprint)

BACKGROUND The need for services to support patient self-care and patient education has been emphasized for patients with chronic conditions. People with chronic conditions may spend many hours per year in health and social care services, but the majority of time is spent in self-care. This has implications in how health care is best organized. The term co-care specifically stresses the combination of health care professionals’ and patients’ resources, supported by appropriate (digital) tools for information exchange, to achieve the best possible health outcomes for patients. Developers of electronic health (eHealth) services need to consider both parties’ specific needs for the service to be successful. Research on participants’ experiences of participating in co-design sessions is scarce. OBJECTIVE The aim of this study was to describe different stakeholders’ (people with chronic conditions, health care professionals, and facilitators) overall experiences of participating in co-design workshops aimed at designing an eHealth service for co-care for Parkinson disease, with a particular focus on the perceptions of values and challenges of co-design as well as improvement suggestions. METHODS We conducted 4 half-day co-design workshops with 7 people with Parkinson disease and 9 health care professionals. Data were collected during the workshop series using formative evaluations with participants and facilitators after each workshop, researchers’ diary notes throughout the co-design process, and a Web-based questionnaire after the final workshop. Quantitative data from the questionnaire were analyzed using descriptive statistics. Qualitative data were triangulated and analyzed inductively using qualitative content analysis. RESULTS Quantitative ratings showed that most participants had a positive general experience of the co-design workshops. Qualitative analysis resulted in 6 categories and 30 subcategories describing respondents’ perceptions of the values and challenges of co-design and their improvement suggestions. The categories concerned (1) desire for more stakeholder variation; (2) imbalance in the collaboration between stakeholders; (3) time investment and commitment paradox; (4) desire for both flexibility and guidance; (5) relevant workshop content, but concerns about goal achievement; and (6) hopes and doubts about future care. CONCLUSIONS Based on the identified values and challenges, some paradoxical experiences were revealed, including (1) a desire to involve more stakeholders in co-design, while preferring to work in separate groups; (2) a desire for more preparation and discussions, while the required time investment was a concern; and (3) the experience that co-design is valuable for improving care, while there are doubts about the realization of co-care in practice. The value of co-design is not mainly about creating new services; it is about improving current practices to shape better care. The choice of methods needs to be adjusted to the stakeholder group and context, which will influence how they experience the process and outcomes of co-design.

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How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study

Journal of Medical Internet Research ◽

10.2196/19195 ◽

2020 ◽

Vol 22 (9) ◽

pp. e19195

Author(s):

Carolina Wannheden ◽

Åsa Revenäs

Keyword(s):

Parkinson’S Disease ◽

Health Care ◽

Parkinson's Disease ◽

Health Care Professionals ◽

Care Management ◽

Chronic Care ◽

Self Care ◽

Chronic Care Management ◽

Organizational Constraints ◽

Ehealth Service

Background Worldwide, the number of people with Parkinson’s disease (PD) is predicted to double between the years 2005 and 2030. Chronic care management requires active collaboration and knowledge exchange between patients and health care professionals (HCPs) for best possible health outcomes, which we describe as co-care. eHealth services have the potential to support the realization of co-care between people with PD (PwP) and HCPs. Objective This study aimed to explore how co-care could be operationalized in PD care, supported by eHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth functionalities to achieve co-care. Methods Principles of participatory design were used to enable the identification of co-care needs and design ideas, in a series of 4 half-day co-design workshops. The sample included 7 (4 women) PwP and 9 (4 women) HCPs, including 4 neurologists, 3 nurses, and 2 physiotherapists. The co-design process resulted in a functional prototype that was evaluated by the co-design participants in the last workshop. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshops. The data were analyzed using qualitative thematic analysis. After the workshop series, the prototype was demonstrated at a Mini Fair for ongoing PD research and evaluated using a self-developed questionnaire with 37 respondents: 31 PwP (14 women) and 6 informal caregivers (3 women). Descriptive statistics are reported. Results The qualitative analysis of data resulted in 2 main themes. The first theme, core eHealth functionalities and their expected values, describes 6 desired eHealth functionalities for supporting PD co-care between PwP and HCPs: (1) self-tracking, (2) previsit forms, (3) graphical visualization, (4) clinical decision support, (5) self-care recommendations, and (6) asynchronous communication. The second theme, individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth service for co-care. Individual constraints include eHealth literacy and acceptance; organizational constraints include teamwork and administrative workload. The majority of the questionnaire respondents (31/37, 84%) perceived that they would benefit from an eHealth service similar to the demonstrated prototype. All prototype functionalities were rated as very important or important by the majority of respondents (ranging from 86% to 97% per functionality). Conclusions This study adds to our knowledge on how PD co-care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by the mutual needs of patients and HCPs and supported by active information exchange between them, as well as automated information processing to generate patient-specific advice. More research is needed to further explore the concept of co-care in chronic care management and what it means for self-care and health care. International Registered Report Identifier (IRRID) RR2-10.2196/11278

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How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study (Preprint)

10.2196/preprints.19195 ◽

2020 ◽

Author(s):

Carolina Wannheden ◽

Åsa Revenäs

Keyword(s):

Parkinson’S Disease ◽

Health Care ◽

Parkinson's Disease ◽

Health Care Professionals ◽

Care Management ◽

Chronic Care ◽

Self Care ◽

Chronic Care Management ◽

Organizational Constraints ◽

Ehealth Service

BACKGROUND Worldwide, the number of people with Parkinson’s disease (PD) is predicted to double between the years 2005 and 2030. Chronic care management requires active collaboration and knowledge exchange between patients and health care professionals (HCPs) for best possible health outcomes, which we describe as co-care. eHealth services have the potential to support the realization of co-care between people with PD (PwP) and HCPs. OBJECTIVE This study aimed to explore how co-care could be operationalized in PD care, supported by eHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth functionalities to achieve co-care. METHODS Principles of participatory design were used to enable the identification of co-care needs and design ideas, in a series of 4 half-day co-design workshops. The sample included 7 (4 women) PwP and 9 (4 women) HCPs, including 4 neurologists, 3 nurses, and 2 physiotherapists. The co-design process resulted in a functional prototype that was evaluated by the co-design participants in the last workshop. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshops. The data were analyzed using qualitative thematic analysis. After the workshop series, the prototype was demonstrated at a Mini Fair for ongoing PD research and evaluated using a self-developed questionnaire with 37 respondents: 31 PwP (14 women) and 6 informal caregivers (3 women). Descriptive statistics are reported. RESULTS The qualitative analysis of data resulted in 2 main themes. The first theme, core eHealth functionalities and their expected values, describes 6 desired eHealth functionalities for supporting PD co-care between PwP and HCPs: (1) self-tracking, (2) previsit forms, (3) graphical visualization, (4) clinical decision support, (5) self-care recommendations, and (6) asynchronous communication. The second theme, individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth service for co-care. Individual constraints include eHealth literacy and acceptance; organizational constraints include teamwork and administrative workload. The majority of the questionnaire respondents (31/37, 84%) perceived that they would benefit from an eHealth service similar to the demonstrated prototype. All prototype functionalities were rated as very important or important by the majority of respondents (ranging from 86% to 97% per functionality). CONCLUSIONS This study adds to our knowledge on how PD co-care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by the mutual needs of patients and HCPs and supported by active information exchange between them, as well as automated information processing to generate patient-specific advice. More research is needed to further explore the concept of co-care in chronic care management and what it means for self-care and health care. INTERNATIONAL REGISTERED REPORT RR2-10.2196/11278

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Can Tele-Health Support Self-Care and Empowerment? A Qualitative Study of Hip Fracture Patients’ Experiences With Testing an “App”

SAGE Open Nursing ◽

10.1177/2377960819825752 ◽

2019 ◽

Vol 5 ◽

pp. 237796081982575 ◽

Cited By ~ 3

Author(s):

Charlotte M. Jensen ◽

Soren Overgaard ◽

Uffe Kock Wiil ◽

Jane Clemensen

Keyword(s):

Health Care ◽

Hip Fracture ◽

Learning Styles ◽

Health Care Professionals ◽

Health Knowledge ◽

Qualitative Content Analysis ◽

Self Care ◽

Qualitative Approach ◽

Individual Interviews ◽

Health Support

Telemedicine or tele-health is increasingly used to help meet challenges in health care linked to demographic changes and an aging population. This study aimed to investigate whether a tele-health solution, an “app” presented on a tablet, can assist patients in their recovery following a hip fracture and accommodate individual learning and health literacy needs to support them in self-care and empowerment. Twenty patients with a hip fracture were informed and educated using an app during hospital admission and for 3 to 4 weeks after discharge. A qualitative approach employed field observation and individual interviews with patients and their relatives. Data were analyzed using qualitative content analysis. Patients found that the app supported their ability to perform self-care and their desire for autonomy. They would not have downloaded the app by themselves but found the use of the app presented on a tablet very supportive in their everyday life while rehabilitating after a hip fracture. Findings indicate that health-care professionals can support information and education for patients with a hip fracture using an app that accommodates different learning styles. This demonstrates that apps used for the dissemination of health knowledge can be used by elderly hip fracture patients even if they are not used to technology.

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Content of Heart failure education by Health-care professionals in Noorder-Kempen, Belgium and Maastricht, the Netherlands: the INTERACT-in-HF study

European Journal of Cardiovascular Nursing ◽

10.1093/eurjcn/zvab060.018 ◽

2021 ◽

Vol 20 (Supplement_1) ◽

Author(s):

K Baldewijns ◽

HP Brunner-La-Rocca ◽

S Bektas ◽

C Rhode ◽

L De Maesschalck ◽

...

Keyword(s):

Heart Failure ◽

Health Care ◽

Patient Education ◽

Health Care Professionals ◽

Pharmacological Treatment ◽

Qualitative Content Analysis ◽

Self Care ◽

Structured Interviews ◽

Pharmacological Interventions ◽

Care Support

Abstract Funding Acknowledgements INTERREG NWE IVb Background According to ESC-guidelines non-pharmacological interventions such as patient-education on lifestyle and self-care support are important to maintain quality of life (QOL) and to prevent (re)hospitalisation in Heart-Failure (HF). Additionally, these guidelines state that HF treatment should be organised in multidisciplinary programs. However, at this moment it remains unclear what kind of information and self-care support is provided by which health care (HC) professional in the regions Noorder-Kempen and Maastricht. Purpose The aim of this study is to describe which part of patient-education and self-care support is provided by different HC-providers in both regions Methods Semi-structured interviews with Cardiologists (CA), General Practitioners (GP’s) and Heart Failure Nurse (HFN) took place, followed by qualitative content analysis with a five-step approach, resulting in 2 main and 9 sub-themes. Results GP’s in both region express they spend very little time on life-style adjustments, symptom monitoring and self-care support. GP’s in Noorder-Kempen spend most consultation time on physical follow-up and pharmacological treatment of HF-patients, leaving no or little time for non-pharmacological interventions. GP’s in Maastricht notice that non-pharmacological treatment is someone else"s responsibility e.g. practice nurses, HFN, CA. All interviewed HC-professionals inform patients considering their diagnosis. GP’s and CA in both regions educate patients considering pharmacological treatment and implanted devices. Moreover GP’s and CA in Noorder-Kempen emphasize the importance of compliance to therapy. HFN in both regions offer comprehensive advice regarding lifestyle adjustments. HFN in Maastricht explicitly mention self-care support as an important part of their interventions. Conclusion Little regional differences could be found in the non-pharmacological interventions offered by the different HC professions involved in HF-management, however each profession has its own focus. GP’s and CA mainly focus on pharmacological and device therapy and therefore educate patients considering these aspects of HF-treatment. HFN mainly focus on lifestyle adjustments and self-care support.

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Health care network for chronic conditions: an intervention and evaluation in the health system

European Journal of Public Health ◽

10.1093/eurpub/ckaa166.1294 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

C S Cardoso ◽

N R Baldoni ◽

C F Melo ◽

L O Rezende ◽

K Noronha ◽

...

Keyword(s):

Health Care ◽

Health System ◽

Health Care Professionals ◽

Chronic Conditions ◽

Panel Study ◽

Health Indicators ◽

Institutional Capacity ◽

Local Health ◽

Care Network ◽

Health Care Network

Abstract Background Health assessments are necessary for the (re) formulation of effective public policies and to guarantee the quality of care offered. This study aim to evaluate the perception of health professionals concerning the institutional capacity of the health system to care for Chronic Conditions (CC) after intervention in a medium-sized municipality in Minas Gerais, Brazil. Methods It is a panel study with evaluation before, during and after an intervention in the health system with a focus on three CC, i.e., i) diabetes; ii) hypertension; and iii) pregnant women. Health care professionals from primary and specialized care units were interviewed using the Assessment of Chronic Illness Care (ACIC) scale, which was applied in nine focal groups organized by health care unit. Results A total of 240 professionals participated of this evaluation, being 94, 63 and 82 participants in 2013, 2015 and 2018 respectively. The ACIC scores showed an positive evolution in the capacity of the health system to care for CC over the years. In the first wave the global score was 5.40 (basic capacity), while in the third wave the score was 9.38 (optimal capacity), with a significant increase in the scores (p < 0.01). Conclusions An important gain in the institutional capacity of the municipality was evidenced for the care of chronic conditions after intervention in the health system. Such an enhancement of the health system to operate in the CC might be sustainable over the time. Furthermore, its impact may directly reflect on the health indicators of the population. Key messages The results showed a strengthening of the local health system. These findings can subsidize other municipalities with a similar reality in the organization of the health care network and, consequently improve the care provided to chronic conditions.

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Advance care planning in Norwegian nursing homes – limited awareness of the residents’ preferences and values? A qualitative study

BMC Geriatrics ◽

10.1186/s12877-019-1378-6 ◽

2019 ◽

Vol 19 (1) ◽

Cited By ~ 1

Author(s):

Lisbeth Thoresen ◽

Reidar Pedersen ◽

Lillian Lillemoen ◽

Elisabeth Gjerberg ◽

Reidun Førde

Keyword(s):

Health Care ◽

Nursing Homes ◽

Advance Care Planning ◽

Health Care Professionals ◽

Qualitative Content Analysis ◽

Care Planning ◽

Next Of Kin ◽

Medical Issues ◽

Interdisciplinary Approaches ◽

Advance Care

Abstract Background 52% of all deaths in Norway occur in nursing homes. Still advance care planning (ACP) is scarce and heterogeneous. To improve the implementation and practice of ACP in nursing homes, knowledge about health care professionals’ views on ACP is vital. The objective of this study is to explore nurses and physicians’ aims and experiences with carrying out ACP in nursing homes. Methods Semi-structured group interviews were conducted with 20 health care professionals, recruited from nursing homes where ACP was performed regularly. Qualitative content analysis was used to analyse the data. Results The primary aim of the nursing home professionals when doing ACP in nursing homes were to build alliances with next of kin to avoid misunderstandings and future conflicts. Two main experiences with ACP were described: i) due to the sensitivity of ACP issues, it was important to balance directness with being sensitive, and ii) when the physicians raised questions concerning future medical treatment, the answers from residents as well as next of kin were often hesitant and unclear. Conclusion Our study add insights into how ACP is practiced in nursing homes and the professionals’ agenda. A focus on medical issues and achieving consensus with next of kin may result in lack of involvement of the residents and limited awareness of the residents’ needs. Interdisciplinary approaches, ACP-training and tailored guidelines may improve the implementation and practice of ACP.

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Smart Glasses for Caring Situations in Complex Care Environments: Scoping Review

JMIR mhealth and uhealth ◽

10.2196/16055 ◽

2020 ◽

Vol 8 (4) ◽

pp. e16055

Author(s):

Charlotte Romare ◽

Lisa Skär

Keyword(s):

Health Care ◽

Intensive Care ◽

Scoping Review ◽

Health Care Professionals ◽

Qualitative Content Analysis ◽

High Tech ◽

Anesthesia Care ◽

Complex Care ◽

Smart Glasses

Background Anesthesia departments and intensive care units represent two advanced, high-tech, and complex care environments. Health care in those environments involves different types of technology to provide safe, high-quality care. Smart glasses have previously been used in different health care settings and have been suggested to assist health care professionals in numerous areas. However, smart glasses in the complex contexts of anesthesia care and intensive care are new and innovative. An overview of existing research related to these contexts is needed before implementing smart glasses into complex care environments. Objective The aim of this study was to highlight potential benefits and limitations with health care professionals' use of smart glasses in situations occurring in complex care environments. Methods A scoping review with six steps was conducted to fulfill the objective. Database searches were conducted in PubMed and Scopus; original articles about health care professionals’ use of smart glasses in complex care environments and/or situations occurring in those environments were included. The searches yielded a total of 20 articles that were included in the review. Results Three categories were created during the qualitative content analysis: (1) smart glasses as a versatile tool that offers opportunities and challenges, (2) smart glasses entail positive and negative impacts on health care professionals, and (3) smart glasses' quality of use provides facilities and leaves room for improvement. Smart glasses were found to be both a helpful tool and a hindrance in caring situations that might occur in complex care environments. This review provides an increased understanding about different situations where smart glasses might be used by health care professionals in clinical practice in anesthesia care and intensive care; however, research about smart glasses in clinical complex care environments is limited. Conclusions Thoughtful implementation and improved hardware are needed to meet health care professionals’ needs. New technology brings challenges; more research is required to elucidate how smart glasses affect patient safety, health care professionals, and quality of care in complex care environments.

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Interplay of coordination, co-creation and community building: examining interprofessional collaboration in workplace development efforts in health care

Journal of Workplace Learning ◽

10.1108/jwl-07-2021-0088 ◽

2022 ◽

Vol ahead-of-print (ahead-of-print) ◽

Author(s):

Laura Seppänen ◽

Inka Koskela ◽

Heli Heikkilä ◽

Helena Leino-Kilpi ◽

Päivi Rautava ◽

...

Keyword(s):

Health Care ◽

Workplace Learning ◽

Health Care Professionals ◽

Interprofessional Collaboration ◽

Qualitative Content Analysis ◽

Community Building ◽

Content Type ◽

Sustained Development ◽

Workplace Development ◽

Working Hypotheses

Purpose Interprofessional collaboration (IPC) is increasingly important in work and workplace learning. The purpose of this paper is to investigate the characteristics of IPC that are relevant for learning and developing at work. Design/methodology/approach We examine IPC in the discussion data of health care professionals when designing, implementing and evaluating developmental tasks. Qualitative content analysis is carried out on temporally sequential task trajectories, considering IPC from the perspective of the objects and goals of IPC task activity in developmental efforts. Findings The developmentally relevant characteristics of IPC are crystallized in the concepts of coordination, co-creation and community building, which play different, interdependent roles in development efforts. We show their interplay and how they complement each other in practice. Research limitations/implications Our findings regarding IPC characteristics are to be interpreted as working hypotheses and resources for further research. Practical implications Understanding the dynamics of IPC is useful for renewing work practices. Attention to the interplay and complementarity of IPC characteristics may help in the design and implementation of effective and sustained development efforts. Originality/value The dynamics of IPC in developmental settings have not been sufficiently studied. This paper proposes three developmentally relevant and intertwined characteristics of IPC for scholars of workplace learning.

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Quality of collaboration and information handovers in palliative care: a survey study on the perspectives of nurses in the Southwest Region of the Netherlands

European Journal of Public Health ◽

10.1093/eurpub/ckaa046 ◽

2020 ◽

Vol 30 (4) ◽

pp. 720-727

Author(s):

Marijanne Engel ◽

Andrée van der Ark ◽

Rosanne Tamerus ◽

Agnes van der Heide

Keyword(s):

Health Care ◽

Palliative Care ◽

Health Care Professionals ◽

Information Exchange ◽

Survey Study ◽

Regional Survey ◽

Cross Sectional ◽

Organizational Collaboration ◽

Deceased Patient

Abstract Background When patients receiving palliative care are transferred between care settings, adequate collaboration and information exchange between health care professionals is necessary to ensure continuity, efficiency and safety of care. Several studies identified deficits in communication and information exchange between care settings. Aim of this study was to get insight in the quality of collaboration and information exchange in palliative care from the perspectives of nurses. Methods We performed a cross-sectional regional survey study among nurses working in different care settings. Nurses were approached via professional networks and media. Respondents were asked questions about collaboration in palliative care in general and about their last deceased patient. Potential associations between quality scores for collaboration and information handovers and characteristics of respondents or patients were tested with Pearson’s chi-square test. Results A total of 933 nurses filled in the questionnaire. Nurses working in nursing homes were least positive about inter-organizational collaboration. Forty-six per cent of all nurses had actively searched for such collaboration in the last year. For their last deceased patient, 10% of all nurses had not received the information handover in time, 33% missed information they needed. An adequate information handover was positively associated with timeliness and completeness of the information and the patient being well-informed, not with procedural characteristics. Conclusion Nurses report that collaboration between care settings and information exchange in palliative care is suboptimal. This study suggests that health care organizations should give more attention to shared professionalization towards inter-organizational collaboration among nurses in order to facilitate high-quality palliative care.

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Health and health-care utilisation in old age: the case of older men living alone

Ageing and Society ◽

10.1017/s0144686x20001439 ◽

2020 ◽

pp. 1-28

Author(s):

Kristian Park Frausing ◽

Michael Smærup ◽

Per Lindsø Larsen ◽

Kirsten Maibom ◽

Knud Juel ◽

...

Keyword(s):

Health Care ◽

Health Care Professionals ◽

Older Men ◽

Health Care Utilisation ◽

Living Alone ◽

Care Utilisation ◽

Custom Made ◽

Health And Social Care ◽

Care Systems ◽

Lower Health

Abstract A growing number of older men are living alone. They are often referred to as an at-risk group in health-care systems. The purpose of this article is to establish an overview of these men's health and health-care utilisation. We do so by drawing on three sources: an online survey with health-care professionals, data from a national self-report health study and register-based data on health-care utilisation. The results show that older men living alone generally have lower health scores than older men co-habiting and that, among older men living alone, lower educational level is associated with lower health scores but also a greater use of free-of-charge health-care services. Health-care professionals conducting preventive home visits consider older men's social needs the most pronounced problem for the men's wellbeing and call for new services to be custom made for them. In this article, we discuss differences between older men living in rural and urban areas and between those who are single, divorced or widowed. We conclude that health and social care systems must differentiate between sub-groups of older men living alone when developing new services and that free-of-charge services, such as general practitioners and home care, should be considered as vehicles for addressing health inequities.

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