Content validity of patient-reported measures evaluating experiences of the quality of transitions in healthcare settings-a scoping review.

No reviews so far have been conducted to define the constructs of patient-experienced quality in healthcare transitions or to identify existing generic measures of patients' experience of the quality within healthcare transitions. Our aim was to identify domains relevant for people experiencing healthcare transitions when evaluating the quality of care they have received, map the comprehensiveness of existing patient-reported experience measures (PREM), and evaluate the PREMs' content validity. The method was guided by the Joanna Briggs Institutes' guidance for scoping reviews. The search was performed on 07 December 2021 and updated 27 May 2024, in the electronic databases Medline (Ovid), Embase (Ovid), and Cinahl (EBSCO). The search identified 20,422 publications, and 190 studies were included for review. We identified 30 PREMs assessing at least one aspect of adults' experience of transitions in healthcare. Summarising the content, we consider a model with two domains, organisational and human-relational, likely to be adequate. However, a more comprehensive analysis and adequate definition of the construct is needed. None of the PREMs were considered content valid.

Hospitalized children experience: Play heroes to build bridges between hospital days and everyday life.

Play has positive effects on children's well-being and development. Play heroes, in Danish, called "Legeheltene", have worked, for the last 7 years, to improve play and movement for hospitalized children in Danish hospitals. However, the significance of this novel Danish intervention is insufficiently researched. This phenomenological-hermeneutic study explored how children experience interacting with a play hero when hospitalized at a Danish paediatric unit. Combined observations and interviews were performed with children from two paediatric departments. Data were analyzed with inspiration from the French philosopher Paul Ricoeur. Three themes were identified: "A sense of familiarity," "From loneliness to connectedness," and "Becoming more powerful." Children experience that interaction with play heroes is existentially meaningful. Through playful activities, children experience that they are connected to their daily lives outside the hospital and their true selves. Bridges to children's everyday lives are built, leading to an improved sense of freedom, security, and the ability to manage difficult aspects of their hospital stay. Engagement with play heroes provides children with an experience of well-being and can be a positive direction in care provided to hospitalized children.

mHealth intervention including text messaging and behaviour change techniques to support maintenance of physical activity after cardiac rehabilitation: A single-arm feasibility study.

Objective: To evaluate the feasibility of a mobile health-supported intervention in patients with cardiovascular diseases after completion of a cardiac rehabilitation programme. Methods: The feasibility study was performed in two hospitals and one municipality in Region Zealand, Denmark. Eligible participants were ≥18 years old, participated in a supervised cardiac rehabilitation programme, had access to a mobile phone, and could walk 3 m independently. Participants received a 12-week intervention utilizing behaviour change techniques, consisting of action planning, text messages, and phone support. Feasibility was assessed using pre-defined progression criteria, which included recruitment (≥75%), retention (≥80%), accelerometer data completeness (≥80%), coordinator (phone support) time (≤30 min), the response rate on patient-reported outcomes (≥90%), adherence (≥75% respond to ≥75% of messages), and acceptability (≥75%). The secondary outcome of objective physical activity was assessed with accelerometers. Results: Ten women and 30 men with cardiovascular diseases aged 63.5 (±9.8 SD) participated. The progression criteria for retention (90%), accelerometer data completeness (83%), coordinator time (9.9 min), adherence (83%), and acceptability (82%) were at acceptable levels, exceptions were progression criteria for recruitment (35%) being below acceptable levels for recruitment, and response rate on patient-reported outcomes (75%). High satisfaction (92.6%) with the intervention was found. All objectively measured physical activity levels remained unchanged from baseline to follow-up. No serious adverse events related to the intervention were reported. Conclusion: Mobile health-supported maintenance of physical activity after cardiac rehabilitation completion was feasible, safe, and acceptable. Yet, changes to improve recruitment and response rate are needed before conducting a large-scale effect evaluation.

Nature-Based Group Exercises for People With Arthritis: A Qualitative Along-Side Interview Study of Lived Experiences.

Arthritis affects many individuals and can cause pain and limit physical functioning. Exercise is an important treatment option for individuals with arthritis; however, adherence to exercise programs can be challenging. A new initiative in Denmark has introduced nature-based exercises for patients with arthritis. This qualitative study aimed to explore the experiences of the individuals who participated in those exercises. The study used a hermeneutic-phenomenological approach and conducted along-side interviews with 12 women and three men who participated in nature-based exercise programs for arthritis. Analysis of the data revealed two main themes. The first theme highlighted the positive effects of being in nature, such as increased vitality, reduced pain, and a sense of well-being. The second theme emphasized the social benefits of participating in these exercises, including a sense of connection and community with others. Overall, this study suggests that incorporating nature-based exercises in treatment programs for arthritis could have significant benefits for individuals with this condition.

Quality in care requires kindness and flexibility - a hermeneutic-phenomenological study of patients' experiences from pathways including transitions across healthcare settings.

BACKGROUND: The number of people living with chronic conditions is increasing worldwide, and with that, the need for multiple long-term complex care across care settings. Undergoing transitions across healthcare settings is both challenging and perilous for patients. Nevertheless, knowledge of what facilitates quality during transitions in healthcare settings from the lifeworld perspective of patients is still lacking. Therefore, we aimed to explore the lived experience in healthcare quality for Danish adult patients during healthcare pathways including transitions across settings. METHODS: Within a hermeneutic-phenomenological approach, interviews were conducted with three women and five men with various diagnoses and care paths between 30 and 75 years of age. Data underwent a three phased thematic analysis leading to three themes. RESULTS: Patients with various illnesses' experiences of quality of care is described in the themes being powerless in the face of illness; burdensome access and navigation; and being in need of mercy and striving for kindness. This highlights that patients' experiences of quality in healthcare pathways across settings interweaves with an overall understanding of being powerless at the initial encounter. Access and navigation are burdensome, and system inflexibility adds to the burden and enhances powerlessness. However, caring care provided through the kindness of healthcare professionals supports patients in regaining control of their condition. CONCLUSIONS: This hermeneutical-phenomenological study sheds light on the lived experiences of people who are at various stages in their care paths with transitions across healthcare settings. Although our findings are based on the lived experiences of 8 people in a Danish context, in light of the discussion with nursing theory and other research, the results can be reflected in two main aspects: I) kind and merciful professional relationships and II) system flexibility including access and navigation, were essential for their experiences of care quality during healthcare transitions. This is important knowledge when striving to provide patients with a clear voice regarding quality in care pathways stretching across settings.

Searching for a brighter future-Lived experiences of ongoing recovery processes following COVID-19 infection.

BACKGROUND: Research in Denmark indicates that approximately 30% of people with confirmed COVID-19 infection experience at least one physical symptom 6-12 months after the acute infection. The lived experiences of undergoing prolonged recovery processes and how these processes unfold need further attention. AIM: To contribute in-depth knowledge about recovery, as experienced over time by people living with the post COVID-19 condition. METHODS: Within a qualitative research design, nine women and six men were interviewed. Ten of them gave a follow-up interview. Prompt cards and participant-generated photographs were included. A phenomenological-hermeneutic approach inspired by Ricoeur's theory of interpretation guided the data analysis. FINDINGS: Living with long-term health problems associated with the post COVID-19 condition involved recovery processes where participants struggled with reduced capacity, new unpredictability and uncertainty in everyday life. Participants continuously searched for improvement and aimed for regaining former health and well-being. Lack of knowledge, acknowledgement and support made it difficult to find clear directions for improvement. Participants created a protective shield and struggled, often jointly with family and friends, to cope with bodily, cognitive, emotional, existential and social challenges. Over time, some participants realised that they might not be able to fully return to their earlier habitus. However, some of them gained a new foothold and sense of hope for the future. CONCLUSION: This study provides in-depth insight into the experience of changing and open-ended recovery processes while living with the post COVID-19 condition. Over time, some participants learned to rebuild their lives, adapting to their reduced capacities. Future care and rehabilitation models for these patients must address the complex and challenging nature of recovery processes associated with living with post-COVID-19 condition.

Alongside: Exploring the Meaningfulness of Significant Moments in Others' Lives Through Observation and Interview.

How do we explore the meaningfulness of others' experiences? What means do we have to access their experiencing of the world? How do we express our understandings of others' experiences of body and place without reducing them to objectification? In this methodological paper, we reflect on how we can gain valuable insights into the lived experiences of others through research activities that are conducted 'alongside' participants. Phenomenological concepts of intentionality and embodiment are considered as we draw on an empirical example of exploring the experiences of hospitalized patients with neurological diseases through observations and interviews. The aim is to unfold alongside as an epistemological stance to explore the meaning of another's lifeworld. We strive to show that personal presence and engagement within this approach contains relational, existential, and aesthetic dimensions worth considering.

An early care void: The injury experience and perceptions of treatment among knee-injured individuals and healthcare professionals - A qualitative interview study.

OBJECTIVES: To better comprehend the initial injury experience and care requirements of knee-injured individuals, as well as healthcare professionals' interactions with early care. DESIGN: Qualitative interviews. SETTING: Public healthcare in Denmark. PARTICIPANTS: Ten individuals (6 women) with major knee injuries (6 anterior cruciate ligament (ACL) and meniscal tears, 2 isolated ACL tears, 1 isolated meniscal tear, 1 patella dislocation), aged 16-33 years (median 19 years), 1-26 months post-injury (median 3 months). Thirteen HCPs (5 physiotherapists, 5 orthopedic surgeons, 3 general practitioners). MAIN OUTCOME MEASURE: Semi-structured individual and focus group interviews, transcribed verbatim and with latent thematic analysis. RESULTS: The three main themes were: 1) Emotional struggles in solitude - knee-injured individuals dealing with emotions alone due to limited HCP resources for emotional support. 2) Blurry beginning - knee-injured individuals finding initial care frustrating, a sentiment shared by HCPs. 3) A journey with no map - knee-injured individuals holding varied outcome expectations, while HCPs hesitate to discuss long-term knee health. CONCLUSION: Early care for knee-injured individuals is filled with worries and unmet emotional and information support needs. HCPs need more support and training to deliver timely and appropriate care.

An invigorating journey towards better function and well-being: A qualitative study of knee osteoarthritis patients' experiences with an online exercise and education intervention.

Objective: To explore what it means for patients with knee osteoarthritis (OA) to engage in online delivered exercise and education. Method: We combined participant observations and focus group interviews with knee OA patients who engaged in an 8-week program (12 exercise sessions and 2 education sessions) delivered online. Data underwent a three-level phenomenological-hermeneutic interpretation inspired by Ricoeur's narrative and interpretation theory. Results: We performed 17 participant observations during online group-based exercise sessions with twenty individuals with knee OA (12 females), median age 71 years (range: 48 to 81), and five focus group interviews with fifteen of the individuals. The following three themes emerged from the data analysis: 1. Exercise engagement portrays an experience of ownership of the exercise-based treatment, leading to better function and well-being and raising hope for the future 2. A good start but only halfway supported portrays perceived well-guided in performing knee OA exercise, however also some unmet support needs in the online format, and 3. Beneficial peer companionship with online constraints portrays a socially engaging peer forum that, at times, was limited by the online format. Conclusions: This phenomenological-hermeneutic study reflects that supervised online exercise and education facilitate identity mobility, potentially increasing self-efficacy to adopt weekly exercise habits in patients with knee OA. However, the program may benefit from enabling a more interactive approach between peer participants and combining the online format with physical group classes. Moreover, further individualization and focus on a gradual approach toward self-management are encouraged.

Experiences of integrating and sustaining physical activity in life with multiple sclerosis, Alzheimer's disease, and ischaemic heart disease: a scoping review.

PURPOSE: The effects of physical activity on health are well-established for chronic diseases such as multiple sclerosis (MS), Alzheimer's disease (AD), and ischaemic heart disease (IHD). However, sustaining physical activity in everyday life is difficult. Lifeworld knowledge can help qualify interventions aimed at resolving this public health issue, but there is a gap in regard to synthesized research on peoples' experiences with integrating and sustaining physical activity. Hence, the purpose of this review is to explore and present the available evidence on experiences with integrating and sustaining physical activity in a lived life with MS, AD, and IHD. METHODS: We conducted a scoping review with qualitative analysis and narrative syntheses in accordance with PRISMA-ScR. Based on SPIDER we ran a systematic search in Cinahl, Embase, Medline, and PsychInfo for primary qualitative research papers published until December 2022. RESULTS: 43 papers were included. A thematic content analysis found that individuals who have MS, AD or IHD find integrating and sustaining physical activity in everyday life meaningful on several levels: Physical activity can facilitate meaningful movement with outcomes of physical, psychosocial, and existential importance. CONCLUSION: The research literature presents a meaning to physical activity that extends the idea of physical fitness to one of existential movement and personal growth. In addition, our review finds that people are more likely to integrate and sustain physical activity if they feel acknowledged, supported and believe that physical activity has a meaningful purpose reflecting their sense of self. Taking a more person-centred approach in rehabilitative care might help qualify the content of physical activity in terms of integration into everyday life, but more research is needed on how to implement a person-centred approach in practice.IMPLICATIONS FOR REHABILITATIONThe research literature presents an experiential meaning to physical activity that extends the idea of physical fitness to one of more existential movement and personal growth.To ensure the integration of physical activity in people's everyday life, future rehabilitation interventions might benefit from adapting a more person-centred approach.People are more likely to sustain physical activity when they feel acknowledged, supported through social relationships, can access activities adapted to their specific needs and preferences, and believe that physical activity has a meaningful purpose reflecting their sense of self.

It is like someone holding your hand when you need it - lived experiences of patients with cardiovascular disease participating in a digital health intervention focusing on the maintenance of physical activity after cardiac rehabilitation.

PURPOSE: To explore patients with cardiovascular diseases' lived experiences of the support given by a text message intervention focusing on the maintenance of physical activity after supervised cardiac rehabilitation. METHODS: In a qualitative study, participants from the feasibility trial FAIR were interviewed individually twice to disclose their lived experiences during and after the trial. Transcribed interviews were analysed based on a phenomenological-hermeneutic method, inspired by Paul Ricoeur's philosophy on narrative and interpretation. RESULTS: Interviews of eight patients with cardiovascular disease (3 females, median age 57 years (range 37 to 74 years)) revealed two themes, The FAIR intervention as a bridge builder in the transition to being physically active in everyday life and Meaningful conditions for maintaining physical activity. Action plans guided physical activity, while text messages facilitated actions and left an impression of still being under supervision. A frame of reference with physical activity, family, being monitored, having to report back, and getting feedback, were incentives for being physically active. CONCLUSION: From a patient perspective, the text message intervention in the feasibility trial FAIR was valuable to support the maintenance of physical activity in the transition from a supervised exercise-based cardiac rehabilitation programme to everyday life on an individual basis. Participants experienced the intervention to hold their hands in changing behaviour and redefining themselves. Yet, there is an extended need for belonging and personal interactions in future interventions.

Patients with cardiovascular disease experience a need for support to maintain physical activity after completing a supervised rehabilitation programme, which is not a part of standard practiceIn a sample of patients with cardiovascular disease, a text message intervention was experienced to provide useful support in the transition from supervised cardiac rehabilitation to being physically active in everyday lifeChanging behaviour is challenging, and digital health interventions give the advantage of influencing health behaviour in real-time with the potential to reach a vast population.

"It has changed my picture of myself": how did females living with chronic pain perceive the impact of the standard pain rehabilitation, including the occupational therapy lifestyle intervention REVEAL(OT)?

PURPOSE: This study investigated patient perceptions of multidisciplinary chronic pain rehabilitation, including the occupational therapy lifestyle management program REVEAL(OT), on everyday life with chronic pain. METHODS: Individual interviews were conducted using video conferencing after completing multidisciplinary chronic pain rehabilitation. The interviews followed a semi-structured interview guide and investigated patient experiences with occupational therapy-supported health behavior transformation. The interviews were transcribed verbatim and analyzed iteratively using an inductive semantic data-driven approach inspired by Braun & Clarke's methodology. RESULTS: Five females, 34 to 58 years old, revealed three common themes: To discover oneself anew; Increased energy and calmness; and Look into the future. The themes reflected transformations towards a healthier lifestyle through enhanced self-control, developing meaningful and secure everyday activities, and gaining reaffirmed dignity. The study also identified the participants' need for professional assistance to cope with the pain after discharge. CONCLUSIONS: Chronic pain rehabilitation that included an occupational therapy intervention supported health behavior transformation and chronic pain self-management in females, where meaningful daily occupations and physical activity played an important role. Individually tailored support, also available after chronic pain rehabilitation, would benefit the transformation process towards improved pain coping in females.Implications for rehabilitationPersonal gains for health and well-being may develop over a shorter or longer time after chronic pain rehabilitation.Targeting daily occupations and physical activity during chronic pain rehabilitation appears meaningful for females living with chronic pain.Progression from an individual to group approach can be relevant in planning chronic pain rehabilitation, but the individual capacities shall be considered.Male perspectives on chronic pain rehabilitation that includes focus on daily occupations and lifestyle need further investigation.

Shaping Better Rehabilitation to Chronic Obstructive Pulmonary Disease Patients: Experiences of Nurses and Colleagues With an Interdisciplinary Telerehabilitation Intervention.

In order to evaluate the reach of a collaborative cross-sectoral telerehabilitation intervention to patients with Chronic Obstructive Pulmonary Disease (COPD), this study investigates how nurses and interdisciplinary colleagues experienced working with it. In two focus group interviews, the experiences of working in the empowerment and tele-based >C☺PD-Life>> program were examined among three nurses and four interdisciplinary colleagues. Data were analyzed with inspiration from Ricoeur's theory of narrative and interpretation and discussed with Gittell's theory of relational coordination. Nurses and colleagues experienced that the intervention paved the way for unique patient-professional coordination and interdisciplinary cross-sectoral teamwork that allowed double-layered relational coordination, focusing holistically on patients' lived challenges in everyday life with COPD. By this rehabilitation setup, nurses and colleagues are perceived as educated to deliver high standard personalized support, raising professional pride and confidence. The findings can inspire future health-promoting initiatives within nursing support related to patients afflicted with COPD.

First steps to integrate general palliative care into a cardiac hospital setting - using dialogue-based workshops.

BACKGROUND: Heart failure is a chronic, life-threatening illness with multiple acute events. Palliative care alongside standard treatment is recommended for these patients. There is a lack of knowledge and research literature on how to integrate palliative care interventions for heart failure patients in a general hospital setting. AIM: The aim of this study was to produce new insight for developing and integrating general palliative care into heart failure treatment. METHODS: Guided by action research, we conducted an interdisciplinary workshop inspired by Tsoukas dialogue theory, where tension between perspectives is used as a facilitator of dialogue and the generation of new insights. Perspectives were incorporated through selected patient narratives and professionals' experiences. Data from the workshop were analysed using a thematic analysis. The findings are interpreted with Kleinman's theory on illness and disease and discussed using Tsoukas theory and additional research. RESULTS: General palliative care must be initiated from the patient's perspective and wishes. Doing so requires understanding and uniting the different perspectives and objectives of heart failure treatment and palliative care. One way of doing this is through a narrative approach with interdisciplinary teams. However, this requires organisational efforts and adaptation to the specific cardiac setting. CONCLUSION: Integrating palliative care principles into cardiology is a complex issue. Developing palliative care for heart failure patients requires more than simply designing a set of guidelines. Rather, a wider outlook involving perspectives, competences and organisation is necessary. Acknowledging such considerations, we designed an intervention centred on three elements: standard heart failure treatment, integrated sessions applying a narrative approach and monthly interdisciplinary conferences. RELEVANCE: This article adds to the current research literature on changing palliative care practice for heart failure patients and the value of integrating different perspectives.

Experiences in responders and non-responders to pulmonary rehabilitation among people with chronic obstructive pulmonary disease: a clinical study with convergent mixed analysis.

PURPOSE: This study aims to investigate the experienced and measured development in physical capacity in people with Chronic Obstructive Pulmonary Disease (COPD) undergoing a standard pulmonary rehabilitation programme with a focus on the diverging experiences of responders and non-responders. METHODS: Twenty-one participants in standard pulmonary rehabilitation were included in the study. We measured the participants' change in the six-minute walk test (6MWT) during rehabilitation participation. We investigated their experiences of the changes in their physical capacity by combined participant observations and interviews. A convergent mixed analysis was conducted of the coherent data. RESULTS: Standard pulmonary rehabilitation had a different physical impact on people with COPD. Responders were delighted by a positive physical change, which improved their daily functioning and capability of fulfilling personal priorities. However, non-responders experienced decreased capacity and a lack of trust in their future. All participants found it challenging to exercise and achieve sustainable exercise habits. CONCLUSION: In this qualitative study, we found that absence of expected improvement to pulmonary rehabilitation seems to confer distress and feelings of hopelessness. The achievement of sustainable change in daily exercise behaviour appears yet to be insufficient. Thus, new and more individualized models of physiotherapists' guidance in exercise are imperative.Implications for rehabilitationIt is vital to acknowledge differential response to people with the chronic obstructive pulmonary disease following eight-week standard pulmonary rehabilitation.Especially noteworthy feelings of distress and hopelessness are prominent to non-responders because of the absence of the promised improvements.Both responders and non-responders require intensive physiotherapist guidance to exercise.It is recommended to ensure individualised support to people with chronic obstructive pulmonary disease in rehabilitation programmes.

Raised illness mastering - a phenomenological hermeneutic study of chronic obstructive pulmonary disease patients' experiences while participating in a long-term telerehabilitation programme.

PURPOSE: To investigate COPD patients' experience on the mastering of their illness during participation in a long-term interprofessional and cross-sectoral telerehabilitation programme called > C☺PD-Life≫. MATERIALS AND METHODS: A phenomenological-hermeneutic study design with combined participant observations and individual interviews formed a continuous data generation among fifteen patients while they participated in the programme. Data underwent a three-levelled interpretation inspired by the theory of the French philosopher Paul Ricoeur. RESULTS: During participation in > C☺PD-Life≫ patients experienced an improvement in how to master their living with COPD. They felt invigorated by an interprofessional rehabilitation team to raise how to deal with physical, mental, social and relational challenges. Programme participation was experienced as surprisingly easy by the patients. CONCLUSIONS: The telerehabilitation solution > C☺PD-Life≫ provides benefits for COPD patients who report improved illness-mastering, attendance and outcome of rehabilitation, as well as enhanced physical and social activity. As an assistive technology intervention, > C☺PD-Life≫ appears to be a valuable addition to existing rehabilitation programmes. However, more knowledge is required to further understand the full-range capacity and impact of tele-based pulmonary rehabilitation.Implications for RehabilitationNew models of rehabilitation to patients with Chronic Obstructive Pulmonary Disease (COPD) is imperative for the development of more suitable health care support to these patients. > C☺PD-Life≫ is a twenty-six-long telerehabilitation intervention program for COPD patients, delivered by an interdisciplinary team collaborating between hospital and the municipality health care service.This paper aims to explore COPD patients' experiences on the mastering of their illness while participating in > C☺PD-Life≫.Patients report improved illness-mastering, attendance, and outcome of rehabilitation, as well as enhanced physical and social activity by participating in the program.As an assistive technology solution, > C☺PD-Life≫ is shown to provide the potential to expand equally assessable support in improving independence, functioning, and well-being to COPD patients.

Understanding Existential Anxiety and the Soothing Nature of Nostalgia in Life With Incurable Esophageal Cancer: A Phenomenological Hermeneutical Investigation of Patient Narratives.

BACKGROUND: Research has identified how people living with incurable esophageal cancer experience existential concerns. OBJECTIVE: The aim of this study was to examine the phenomenon of existential anxiety when living with esophageal cancer in the context of receiving general palliative care in a hospital setting. METHODS: This qualitative study is inspired by phenomenological and hermeneutical aspects of the philosophies of Ricoeur and Heidegger. Applying Heidegger's theory of existential anxiety and nostalgia, we interpreted the narratives of 18 patients receiving palliative care due to incurable esophageal cancer. RESULTS: The patients experienced existential anxiety at the loss of a future and homeliness when receiving palliative care. Their existence was reduced to the present, with a break in temporal continuity. An anxious mood permeated their entire being-in-the-world in an unhomelike way. Despite this, patients initiated a restoration of home and meaning expressed as a soothing sense of nostalgia that served as an atmospheric, safe space allowing them to inhabit the borderline between past, present, and future. CONCLUSIONS: The study suggests an empirical interpretation of the existential anxiety patients experience when receiving palliation for incurable esophageal cancer. It sheds light on how these patients would benefit from healthcare professionals inviting them to narrate significant aspects of their life stories in which the soothing presence of nostalgia can be supported. IMPLICATION FOR PRACTICE: Providing care conditions for a life heading toward death, where the patient can live alongside anxiety, involves focusing on "being with" the patient and on incorporating a nostalgic dimension to facilitate soothing restoration of home for patients.

Wearables in real life: A qualitative study of experiences of people with epilepsy who use home seizure monitoring devices.

OBJECTIVE: To explore the experiences of people with epilepsy using wearables for home seizure monitoring. METHODS: Nine people with epilepsy participated in eighteen semistructured individual interviews before and after home monitoring with wearable seizure monitoring equipment. An open-ended interview guide was used to encourage the participants to elaborate on their thoughts and experiences. Interviews were analyzed using a three-level process inspired by the philosopher Max van Manen. RESULTS: The overall findings illustrate that patients experienced being placed in the spotlight when wearing wearables. The meaning of being in this spotlight is reflected in three themes: Becoming vulnerable through exposure, Standing alone while being with others, and Having a renewed life situation. The analysis and interpretation showed that although the participants expressed readiness to use the wearables, they were less willing to do so after a few days of monitoring. The visibility of the devices influenced how they experienced themselves and were perceived by others. CONCLUSION: For people with epilepsy, wearables are more than just technical tools; they have a significant existential impact on everyday life. Wearables spotlight the epilepsy condition, and this causes people with epilepsy to experience an existential disruption, as they experience being exposed and vulnerable. This results in a renewed way of perceiving oneself. Nevertheless, wearables also validate epilepsy symptoms, thereby reducing the uncertainty related to epilepsy.

Feasibility assessment of an occupational therapy lifestyle intervention added to multidisciplinary chronic pain treatment at a Danish pain centre: a qualitative evaluation from the perspectives of patients and clinicians.

Purpose: As part of intervention feasibility evaluation before conducting a clinical trial, this study aimed to investigate perspectives of patients and clinicians involved in the occupational therapy lifestyle-oriented programme REVEAL(OT) [Redesign your EVEveryday Activities and Lifestyle with Occupational Therapy] which was added to multidisciplinary chronic pain treatment.Methods: We conducted three focus group interviews, two with eight voluntarily selected patients and one with four clinicians. Data were analysed using Braun & Clarke's semantic data-driven analysis.Results: Patients reported satisfaction with the intervention and a greater acceptance of living with chronic pain through increased understanding of pain mechanisms, more effective daily planning and improved social interaction. Patients felt empowered to change lifestyle habits by restarting habitual interests, prioritizing joyful occupations for improved occupational balance, and lifestyle modifications. Contact to occupational therapists and peer support were important empowering factors for working with lifestyle goals. Patients and clinicians expressed their views on further improvement of the REVEAL(OT).Conclusions: Patients and clinicians found the lifestyle-oriented occupational therapy programme relevant as an add-on to the multidisciplinary chronic pain treatment. A need was expressed for a reduced information and treatment load and a higher degree of communication and cooperation among the clinicians involved in the intervention.

Can patients' narratives in nursing enhance the healing process?

Although there is a growing acknowledgement of the potential of a more nuanced healthcare paradigm and practice, the discourses of health promotion-and with that nursing and other healthcare professionals' practice-still tend to focus on the medical diagnosis, disease and the rationale of biomedicine. There is a need for shifting to a human practice that draws on a broader perspective related to illness. This requires a transformation of practices which can be constructed within a narrative understanding. A narrative approach appreciates the importance of emotion and intersubjective relation in the telling and listening that occur in the clinical encounter. The essence of nursing lies in the creative imagination, the sensitive spirit and the intelligent understanding of the individuals' possibilities of becoming empowered in his or her own life. This entails that the focus of the use of patients' narratives is, ultimately, not the story itself, but the nurses' and other healthcare professionals' ability to support the patients in finding useful meaning in their stories. Herein, it is of particular importance to let the patients narrate about what is sparkling moments or events in the lived life. Stories with such focus can open up for patients' hopes and dreams, which gives inspiration for finding meaningful ways to cope in life empowering personal recovery. It is, therefore, crucial to transform clinical settings into places that acknowledge the need for imagination and creativity, aiming at creating the opportunity for sensibility and vision essential to encouraging a narrative approach and thereby the ability to reflect upon and promote a healing process.