Epistemological aspects of participatory design studies conducted in the field of health science.

AIM(S): To discuss the methodological aspects of participatory design, arguing for a three-phase approach and the suitability of situating participatory design within a phenomenological-hermeneutical tradition in health science. DESIGN AND METHODS: Methodological discussion based on participatory design theory, epistemology and research studies. RESULTS: The epistemological and methodological discussions show how the core values and key elements of participatory design align with the phenomenological-hermeneutical approach. In addition, examples of participatory design studies are provided to illustrate how it can be conducted in health science. CONCLUSION: Participatory design is a flexible framework based on genuine participation, defined by three core values: having a say, mutual learning and democratization. The iterative processes allow for adjustments in alignment with the core values and the scientific stance that defines the choice of methods, tools and techniques. A phenomenological-hermeneutic approach in participatory design studies is relevant and aligned with the core values of participatory design. Thus, this paper argues for a close integration between the participatory design methodology and the phenomenological-hermeneutic scientific approach within health science. IMPLICATIONS FOR THE PROFESSION: Participatory design is a powerful methodology with core values that can co-design sustainable health technologies with potential to impact patient care and the clinical practice of nurses. When combined with qualitative research methods, patients' lived experiences serve as the foundation for improving clinical nursing practice. Discussing the epistemological aspects of participatory design provides nurse researchers with a coherent methodological understanding, essential for the continual development of nursing research. IMPACT: This paper discusses the research methodology of participatory design within health sciences. It aims to address the lack of understanding of the methodology, particularly within a specific scientific stance. The main finding is the elaboration on participatory design and the relevance of a phenomenological-hermeneutical approach. The paper has the potential to impact researchers, master's and PhD students, as well as others engaged in participatory design or other methodologies related to user involvement within health science. REPORTING METHOD: No available EQUATOR guidelines were applicable to this methodological paper, as no new data were created or analysed. PATIENT OR PUBLIC CONTRIBUTION: There was no direct patient or public contribution, as this is a methodological paper.

Transitioning from hospital to home after a major lower extremity amputation: Interview study on patients' and relatives' perspectives.

INTRODUCTION: Patients often feel unprepared and concerned about their new life after a major lower extremity amputation (LEA). Therefore, we implemented an integrated care program, Safe Journey, to optimize the quality and continuity of care for patients with LEA due to vascular disease when transitioning from hospital to home. This study aims to illuminate and explore the experiences of patients with LEA and their relatives with the transition from hospital to home after implementing Safe Journey. MATERIAL AND METHODS: This qualitative, exploratory study individually interviewed six patients with a major LEA and four relatives and jointly interviewed eight patients with their relatives. RESULTS: The participants' experiences transitioning from hospital to home were centered around two major themes: (1) Going home: mixed emotions and confusion, and (2) bridging the gap. The main themes encompassed six subthemes: (1) simultaneously expectant and worried, (2) a lack of knowledge creating uncertainty, (3) an unexpressed but pending need for psychosocial support, (4) reassurance but safety comes at a price, (5) navigating the system, and (6) lack of involvement. CONCLUSION: Transitioning from hospital to home after a major LEA creates mixed emotions. Knowledge, feeling involved, and being prepared and cared for were highlighted as important during the transition. The Safe Journey program made patients and relatives feel physically reassured and safe, but all the home visits strained the families. The program's benefits are consistent with existing knowledge on patients with complex needs benefitting from integrated care models. However, a more individualized and person-centered approach is needed.

Adult patients' experiences after a distal radius fracture - A qualitative systematic review.

BACKGROUND: Distal radius fractures are a common presentation in emergency departments. Synthesis of qualitative research of treatment, care and rehabilitation this fracture presents from the patient perspective could improve clinical practice and care. The purpose of this systematic review was to synthesize the qualitative literature on patient experiences after sustaining a distal radius fracture. METHODS: We searched Embase, MEDLINE, CINAHL, Psycinfo and CINAHL to identify qualitative studies published from database conception to May 2023. All studies were screened, extracted, analysed and quality assessed by two blinded reviewers. A thematic synthesis approach was used to analyse the findings from included studies. RESULTS: A total of 9 studies interviewing 160 unique patients were included. We identified 3 themes in relation to patient experiences after sustaining a distal radius fracture: 1) Concerns about dependency, 2) Fear and pain and 3) Motivators for recovery. The themes did not exist as sharply demarcated topics but were intertwined with patients reflecting that more information and knowledge could assist in managing expectations and the recovery period. CONCLUSION: Our synthesis highlighted that adult patients with DRF experience a lack of information about the care and treatment inhibiting independence and successful management of expectations due to pain, fear and lack of motivation. Our findings can inform orthopaedic units and assist in tailoring information to patient needs.

Usability and Evaluation of a Health Information System in the Emergency Department: Mixed Methods Study.

BACKGROUND: A lack of information during an emergency visit leads to the experience of powerlessness for patients and their family members, who may also feel unprepared to cope with acute symptoms. The ever-changing nature and fast-paced workflow in the emergency department (ED) often affect how health care professionals can tailor information and communication to the needs of the patient. OBJECTIVE: This study aimed to evaluate the usability and experience of a newly developed information system. The system was developed together with patients and their family members to help provide the information needed in the ED. METHODS: We conducted a mixed methods study consisting of quantitative data obtained from the System Usability Scale questionnaire and qualitative interview data obtained from purposively selected participants included in the quantitative part of the study. RESULTS: A total of 106 patients and 14 family members (N=120) answered the questionnaire. A total of 10 patients and 3 family members participated in the interviews. Based on the System Usability Scale score, the information system was rated close to excellent, with a mean score of 83.6 (SD 12.8). Most of the participants found the information system easy to use and would like to use it again. The participants reported that the system helped them feel in control, and the information was useful. Simplifications were needed to improve the user experience for the older individuals. CONCLUSIONS: This study demonstrates that the usability of the information system is rated close to excellent. It was perceived to be useful as it enabled understanding and predictability of the patient's trajectory in the ED. Areas for improvement include making the system more usable by older individuals. The study provides an example of how a technological solution can be used to diminish the information gap in an ED context.

Lingering challenges in everyday life for adults under age 60 with hip fractures - a qualitative study of the lived experience during the first three years.

PURPOSE: We aimed to illuminate the lived experiences and the path of recovery for adults sustaining a hip fracture before the age of 60. METHODS: Participants were purposively sampled from a prospective multicenter cohort study in Sweden and Denmark, and narrative interviews were conducted with 19 individuals 0.7-3.5 years after the fracture. We used a phenomenological hermeneutic method to describe the participants' expressed essential meaning. RESULTS: The experience of sustaining a hip fracture was expressed as a painful and protracted process of regaining self-confidence, function, and independence. It also implied a sense of growing old from one day to the next. Participants were afraid of new falls and fractures, resulting in an increased wariness. When expressing fears and persisting symptoms, participants described being neglected and marginalized by the healthcare system, which was perceived as non-receptive and routinely driven by a notion that hip fractures affect only the elderly. Rehabilitation targeted towards needs different from those of elderly individuals was requested. CONCLUSION: The lived experience of sustaining a hip fracture in individuals under 60 includes substantial challenges in everyday life, even up to 3.5 years after the injury. Rehabilitation pathways tailored to the needs of younger patients are requested.

A qualitative study of patients' experiences before, during and after surgical treatment for periprosthetic knee joint infection; "I assumed it had to be like that ".

BACKGROUND: Periprosthetic joint infection (PJI) of the knee is associated with extended hospital stay, high doses of antibiotics, lengthy rehabilitation, and pain. Standard treatment is a two-stage procedure comprising two surgeries and two hospitalizations. To facilitate exploration of patients' perspectives, the qualitative study presented here was an adjunct to a Danish randomized controlled trial comparing one-stage and two-stage revision surgery. AIM: To explore patient experiences, before, during and after hospitalization and surgical treatment with one- or two-stage revision for PJI of the knee. MATERIAL AND METHODS: Qualitative, semi-structured telephone interviews were conducted with 10 individuals who had undergone either one- or two-stage revision because of PJI. Thematic analysis was employed. RESULTS: The essence of the findings was that the infection was a transition point in a possible life-changing illness. The three themes representing this comprised: 1) physical, 2) psychological, and 3) social implications. Each theme is further illuminated with subthemes. CONCLUSIONS: Infection is a transition point in a possible life changing illness. Late diagnosis and delayed treatment are major issues. Individuals suffer from pain, weight loss, fatigue, and reduced mobility as well as dependency on family members, leading to psychological challenges including depression. IMPLICATIONS FOR CLINICAL PRACTICE: Patients with PJI of the knee could be better informed, educated and involved before and during treatment. Information is needed not only about the physical consequences, but also the psychological and social consequences. More patient involvement and inter-professional and care sector coordination is important when caring for patients with PJI.

Translation and cultural adaption of the emergency department-consumer assessment of healthcare providers and systems (ED CAPHS)-A questionnaire to measure patient experience in Denmark.

AIM: The aim of this study was to translate and culturally adapt The Emergency Department-Consumer Assessment of Healthcare Providers and Systems (ED CAPHS) to the Danish ED context. BACKGROUND: In Denmark, a large number of patients attend emergency departments (ED) every year. During their ED visits, examinations, tests and encounters with different healthcare professionals occur frequently. Moreover, patients receive much information. Patients' direct experiences of care can provide valuable insights into what works and what does not in health care. The emergency department-consumer assessment of healthcare providers and systems (ED CAPHS) is a valid questionnaire designed to measure patients' experiences with ED care and is intended for patients discharged home following their ED visit. METHOD: The translation process was systematically planned and executed using the principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) guidelines by the ISPOR. RESULTS: The translation and cultural adaption process were successfully conducted. Three items concerning language and race were omitted as they are not distinct in Danish ED context. Furthermore, a few conceptual factors and linguistic challenges were discussed and harmonised during the reconciliation and harmonisation process respectively. The Danish survey ED CAPHS DK containing 32 items was proofread and finalised. CONCLUSION: Overall, patients reported that the survey was relevant and comprehensive, as it focused on essential factors when discharged directly home after an ED admission. ED CAPHS DK is found to be content valid and ready for use. However, a future study testing the Danish version using confirmative factor analysis and internal consistency reliability is needed to ensure construct validity and reliability.

Health professionals' perspectives of patients' and family members' needs in emergency departments and patient pathway improvement: a qualitative study in Denmark.

OBJECTIVE: Besides working in a fast-paced environment, healthcare professionals (HCPs) in the emergency department (ED) are required to promptly respond to patients' needs and simultaneously achieve their organisational goals, which can be challenging. This study investigates how HCPs perceive and support the needs of patients discharged after a brief ED stay, as well as their family members. DESIGN: The study used focus group discussions. The text material was analysed using systematic text condensation. SETTING: Data were collected from two large EDs in Denmark. PARTICIPANTS: Sixteen HCPs were sampled purposively to participate in three focus group discussions. RESULTS: Three main themes were condensed: (1) creating a trustful and reassuring relationship; (2) responding to family members: a bother or a benefit; and (3) working as an interdisciplinary team. The study indicated the need for increased interdisciplinary collaboration to reduce discrepancies in information dissemination, to meet patient and family needs and to deliver a holistic approach. A technical solution was suggested to facilitate collaborative teamwork. CONCLUSION: The study highlighted an existing gap between emergency HCPs' perceptions of patients' and family members' needs and the provision of the current patient and family support. Suggestions for future interventions include focusing on interdisciplinary teamwork, facilitated by a technical solution to support a person-centred and family-centred informative approach.

Development of a health information system to promote emergency care pathways: A participatory design study.

Objective: The successful development and implementation of sustainable healthcare technologies require an understanding of the clinical setting and its potential challenges from a user perspective. Previous studies have uncovered a gap between what emergency departments deliver and the needs and preferences of patients and family members. This study investigated whether a user-driven approach and participatory design could provide a technical solution to bridge the identified gap. Methods: We conducted four workshops, and five one-to-one workshops with patients, family members, healthcare professionals, and information technology specialists to codesign a prototype. Revisions of the prototype were made until an acceptable solution was agreed upon and tested by the participants. The data were analyzed following iterative processes (plan → act → observe → reflect). Results: The participants emphasized the importance of a person-centered approach focusing on improved information. An already implemented system for clinicians' use only was redesigned into a unique patient module that provides a process line displaying continually updated informative features, including (1) person-centered activities, (2) general information videos, (3) a notepad, (4) estimated waiting time, and (5) the nurse and physician responsible for care and treatment. Conclusion: Participatory design is a usable approach to designing an information system for use in the emergency department. The process yielded insight into the complexity of translating ideas into technologies that can actually be implemented in clinical practice, and the user perspectives revealed the key to identifying these complex aspects. The iterations with the participants enabled us to redesign an existing technology.

Patients perspective on treatment and early rehabilitation after an ankle fracture: A longitudinal qualitative study.

Worldwide, ankle fractures are among the most common fractures encountered in emergency departments. To inform healthcare professionals about what is important to patients when organizing an individualized, high-quality treatment plan, patient perspectives on treatment, care, and early rehabilitation are highly relevant. This longitudinal interview study aims to explore the perspectives of patients with surgically (ST) and conservatively (CT) treated ankle fractures within ten days and six weeks after an ankle fracture. Fourteen patients were interviewed using a semi-structured interview guide. Data were analyzed according to qualitative content analysis. Findings revealed themes regarding pain, independence, information, and worries about the future. Initially, all patients had a pragmatic attitude toward the future, but this attitude was significantly different after 6 weeks as many of the ST patients were still in pain and were more worried about the future. Patients' feelings of uncertainty were linked to a lack of information. Our findings indicate a need for further research to develop a more specific description of symptoms patients should expect as treatment progresses for patients with ankle fractures. With the goal of decreasing psycho-social concerns regarding mobility, autonomy, and working ability post fracture.

What are the needs and preferences of patients and family members discharged from the emergency department within 24 hours? A qualitative study towards a family-centred approach.

OBJECTIVE: There is an increase in patients being discharged after short stays in the emergency department, but there is limited knowledge of their perspectives on treatment and care. This study aims to explore and understand the needs and preferences of emergency care from the perspective of patients and family members discharged from the emergency department within 24 hours of admission. DESIGN: The study reports from the first phase in an overall participatory design project. Systematic text condensation was used to identify key themes from field observations and interviews with patients and family members. SETTING: This study was conducted in two emergency departments in the Region of Southern Denmark. PARTICIPANTS: All adults aged ≥18 years who had been discharged from the emergency department within 24 hours were eligible to take part. Purposeful sampling was used to recruit patients and family members with different sociodemographic features. RESULTS: Field observational studies (n=50 hours), individual interviews with patients (N=19) and family members (N=3), and joint interviews with patients and family members (N=4) were carried out. Four themes were derived from the material: (1) being in a vulnerable place-having emotional concerns; (2) having a need for person-centred information; (3) the atmosphere in the emergency department and (4) implications of family presence. CONCLUSION: This study demonstrates a gap between patients' and family members' needs and preferences and what current emergency departments deliver. The findings highlight the importance of family and person-centred care. Tailored communication and information with genuine involvement of family members is found to be essential needs during acute illness.

How to improve emergency care to adults discharged within 24 hours? Acute Care planning in Emergency departments (The ACE study): a protocol of a participatory design study.

INTRODUCTION: The development of acute symptoms or changes in diseases led to feelings of fear and vulnerability and the need for health professional support. Therefore, the care provided in the acute medical and surgical areas of the emergency department (ED) is highly important as it influences the confidence of patients and families in managing everyday life after discharge. There is an increase in short-episode (<24 hours) hospital admissions, related to demographic changes and a focus on outpatient care. Clear discharge information and inclusion in treatment decisions increase the patient's and family's ability to understand and manage health needs after discharge, reduces the risk of readmission. This study aims to identify the needs for ED care and develop a solution to improve outcomes of patients discharged within 24 hours of admission. METHODS AND ANALYSIS: The study comprises the three phases of a participatory design (PD). Phase 1 aims to understand and identify patient and family needs when discharged within 24 hours of admission. A qualitative observational study will be conducted in two different EDs, followed by 20 joint interviews with patients and their families. Four focus group interviews with healthcare professionals will provide understanding of the short pathways. Findings from phase 1 will inform phase 2, which aims to develop a solution to improve patient outcomes. Three workshops gathering relevant stakeholders are arranged in the design plus development of a solution with specific outcomes. The solution will be implemented and tested in phase 3. Here we report the study protocol of phase 1 and 2. ETHICS AND DISSEMINATION: The study is registered with the Danish Data Protection Agency (19/22672). Approval of the project has been granted by the Regional Committees on Health Research Ethics for Southern Denmark (S-20192000-111). Findings will be published in suitable international journals and disseminated through conferences.

Bridging the gap: A user-driven study on new ways to support self-care and empowerment for patients with hip fracture.

OBJECTIVES: In future healthcare systems, individuals are expected to be more involved in managing their health and preventing illness. A previous study of patient empowerment on a hip fracture pathway uncovered a gap between what the healthcare system provided and patients' needs and wishes. The aim of this study was to investigate whether a user-driven approach and a participatory design could provide a solution that would bridge this gap. METHODS: Four workshops and a laboratory test were conducted with healthcare professionals to co-create a final prototype. This was performed in iterative processes through continuous interviews and face-to-face evaluation with patients, together with field studies in patients' homes, to maintain relevance to end-users, that is, patients and healthcare professionals. The data were analysed according to the plan, act, observe and reflect methodology of iterative processes in participatory design. RESULTS: Our results contribute to a key research area within patient involvement. By using participatory design, patients and healthcare professionals gained a mutual understanding and collaborated to create a technological solution that would encompass needs and wishes. Patient empowerment also involved giving healthcare professionals a means of empowerment, by providing them with a platform to support patient education. We found that one solution to bridging the aforementioned gap could be an app, including a range of educational features that would accommodate different learning styles. CONCLUSION: In developing a technological solution, user involvement in a participatory design ensures usability and inclusion of the requested functionalities. This can help bridge the gap between what the healthcare system provided and patients' needs and wishes and support patients' individual empowerment needs and self-care capacity. Together with the tools and techniques, the setting in which PD unfolds should be thoughtfully planned.