Involvement of patients in the research process.

Healthcare research emphasises involvement of patients in the research process, recognizing that this can enhance the relevance, quality, and implementation of research. This article highlights the need for more systematic planning to successfully involve patients in research projects and provides guidance on key aspects that researchers should consider in the planning of involving patients in research. The article accentuates the importance of establishing clear frameworks and guidelines to promote transparency and facilitate implementation.

Feasibility of early digital health rehabilitation after cardiac surgery in the elderly: a qualitative study.

BACKGROUND: Increasing numbers of elderly patients experience prolonged decreased functional capacity and impaired quality of life after seemingly successful cardiac surgery. After discharge from hospital, these patients experience a substantial gap in care until centre-based cardiac rehabilitation commences. They may benefit from immediate coaching by means of mobile health technology to overcome psychological and physiological barriers to physical activity. The aim of this study was to explore the usability, acceptability, and relevance of a mobile health application designed to support remote exercise-based cardiac rehabilitation of elderly patients early after cardiac surgery from the perspective of patients, their relatives, and physiotherapists. METHODS: We adapted a home-based mobile health application for use by elderly patients early after cardiac surgery. Semi-structured dyadic interviews were conducted with a purposive sample of patients (n = 9), their spouses (n = 5), and physiotherapists (n = 2) following two weeks of the intervention. The transcribed interviews were analysed thematically. RESULTS: Three themes were identified: 1) creating an individual fit by tailoring the intervention; 2) prioritizing communication and collaboration; and 3) interacting with the mobile health application. Overall, the findings indicate that the mobile health intervention has the potential to promote engagement, responsibility, and motivation among elderly patients to exercise early after surgery. However, the intervention can also be a burden on patients and their relatives when roles and responsibilities are unclear. CONCLUSION: The mobile health intervention showed potential to bridge the intervention gap after cardiac surgery, as well as in fostering engagement, responsibility, and motivation for physical activity among elderly individuals. Nevertheless, our findings emphasize the necessity of tailoring the intervention to accommodate individual vulnerabilities and capabilities. The intervention may be improved by addressing a number of organizational and communicational issues. Adaptions should be made according to the barriers and facilitators identified in this study prior to testing the effectiveness of the intervention on a larger scale. Future research should focus on the implementation of a hybrid design that supplements or complements face-to-face and centre-based cardiac rehabilitation. TRIAL REGISTRATION: Danish Data Protection Agency, Central Denmark Region (1-16-02-193-22, 11 August 2022).

Measures used to assess interventions for increasing patient involvement in Danish healthcare setting: a rapid review.

OBJECTIVE: To identify measures used within Denmark evaluating any type of intervention designed to facilitate patient involvement in healthcare. DESIGN: Environmental scan employing rapid review methods. DATA SOURCES: MEDLINE, PsycInfo and CINAHL were searched from 6-9 April 2021 from database inception up to the date of the search. ELIGIBILITY CRITERIA: Quantitative, observational and mixed methods studies with empirical data on outcomes used to assess any type of intervention aiming to increase patient involvement with their healthcare. Language limitations were Danish and English. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers extracted data from 10% of the included studies and, due to their agreement, the data from the rest were extracted by first author. Data were analysed with reference to existing categories of measuring person-centred care; findings were synthesised using narrative summaries. Adapted Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidelines were used to guide reporting. RESULTS: Among 3767 records, 43 studies met the inclusion criteria, including 74 different measures used to evaluate interventions aimed at increasing patient involvement within healthcare in Danish hospital and community settings. Generic measures assessed: patient engagement (n=3); supporting self-management (n=8); supporting shared decision-making (n=9); patient satisfaction and experiences of care (n=11); health-related patient-reported outcome (n=20). CONCLUSIONS: Across Denmark, complex interventions designed to improve patient involvement with healthcare vary in their goals and content. Some targeting healthcare professionals, some patient health literacy and some service infrastructure. A plethora of measures assess the impact of these interventions on patient, professional and service delivery outcomes. Few measures assessed patient involvement directly, and it is unclear which proxy measures capture indicators of perceived involvement. Lack of conceptual clarity between intervention goals, the components of change and measures makes it difficult to see what types of intervention can best support change in services to ensure patients are more effectively involved in their healthcare.

Developing and testing guidance to support researchers engaging patient partners in health-related research.

BACKGROUND: Although interest in Patient and Public Involvement in health-related research is growing, there seems to be a lack of guidance supporting researchers in deciding on methods and levels for Patient and Public Involvement in health-related research throughout the research process. Furthermore, the numerous definitions, methods, and frameworks make it challenging for researchers new to this field to decide on the most appropriate approach for their project. METHODS: This study aimed to develop and test guidance for researchers deciding on approaches, levels, and methods for engaging patient partners in health-related research. A group of 11 researchers in Patient and Public Involvement in health-related research participated in six workshops to develop the guidance. The feasibility and acceptability of the guidance were tested in a survey of 14 researchers using the System Usability Scale plus two elaborative questions. The guidance was also tested by five PhD students engaging patient partners in their projects. RESULTS: The guidance developed consisted of two resources: Resource I outlined five international approaches to Patient and Public Involvement in health-related research, and Resource II described the different levels and methods for engaging patient partners in research. The System Usability Scale score (at the 50th percentile) was 80, indicating excellent usability. Qualitative data showed that the two resources supported reflections regarding different approaches, levels, and methods. CONCLUSION: The researchers found the guidance to be supportive of their reflective thinking about engaging patient partners in their research. The testing provided knowledge about when and how to use the guidance but also raised questions about the usefulness of the guidance in communications with patients.

More and more patients are taking part in research as patient partners. However, researchers have little guidance on how to bring patient partners into research studies and at what levels. There are many ways to do this. It can be hard to choose the way most appropriate for a specific project, especially for newer researchers. We (11 researchers at different career levels) developed guidance through six workshops to help new researchers choosing the way to engage patient partners most appropriate for their project. The guidance resulted in two different resources. Resource I gives five international approaches for bringing patient partners into research. Resource II describes methods for engaging patient partners at different levels. Fourteen researchers and five PhD students tested the guidance and scored how usable it is. It had excellent usability. The two resources did help researchers to decide on the best ways to engage patient partners in research. We now need to test how the guidance can be used to talk to patients about taking part in specific research projects.

Being with others during physical activity: experiences of well-being among adults with severe obesity.

BACKGROUND: The experience of physical activity is influenced by social relations and gendered roles. Group-based lifestyle interventions are considered effective in promoting physical activity, yet the experiences of being active with others are unknown among individuals with severe obesity. PURPOSE: To explore how individuals with severe obesity experience being with others during physical activity. METHODS: A qualitative hermeneutic phenomenological study of repeated single-gender focus group interviews was conducted with adults living with severe obesity during group-based lifestyle intervention. RESULTS: Three themes were developed: 1) 'Enjoying safety, kinship and belonging among peers'; 2) 'Feeling like a failure is shameful: A sense of aversion'; and 3) 'Striving to feel at home in physical activity: Needing distance from others.' The themes were drawn into an overall meaning 'Achieving wellbeing may always be a challenge: not feeling at home in the group or in body.' CONCLUSION: Intersubjective and spatial dimensions of experiences are central and influence how individuals with severe obesity can feel wellbeing and 'at home' in physical activity. Physiotherapists should be aware of the individuals' vulnerability regarding feelings of failure, aversion, and shame as well as awareness of gendered norms and roles.

The ups and downs of lifestyle modification: An existential journey among persons with severe obesity.

BACKGROUND: Maintaining a healthy living after the end of a lifestyle intervention is a challenge for persons with severe obesity. Measurable outcomes are often emphasised, but there is a need for understanding the process of lifestyle change and the long-term perspectives among persons with severe obesity. AIM AND OBJECTIVE: To describe and deepen the understanding of how persons with severe obesity experience making and maintaining lifestyle changes in everyday life three years after lifestyle intervention. METHODOLOGY AND METHODS: The study used a hermeneutic phenomenological approach. A purposive sample of seven adults with BMI ≥ 40 was recruited from a lifestyle intervention programme. Data were generated through individual follow-up interviews. The analysis was based on theoretical framework on dwelling and mobility. Ethical approvals were received from the Danish Data Protection Agency and the ethical principles of the Declaration of Helsinki were followed. RESULTS: One overarching theme emerged: 'The journey of ups and downs'. Three sub-themes were: 'Living with and tackling the demands of life's hassles', 'Deliberating the fight for weight loss' and 'Needing a trusted person to feel met as a human being'. CONCLUSIONS: Everyday life among persons with severe obesity is experienced as a dynamic process of shifting experiences of dwelling and mobility. Sustained lifestyle changes require ongoing adjustments of action, which healthcare providers can influence in ways that either support or obstruct. Collaboration and a humanised approach across disciplines and sectors are suggested to promote sustained healthy living.

Balancing one's mood: experiences of physical activity in adults with severe obesity 18 months after lifestyle intervention.

BACKGROUND: Patients with severe obesity may have special challenges in regard to increasing health and well-being through physical activity (PA). The biggest challenge is maintaining the recommended PA level on a long-term basis. Yet, little focus has been put on the experiences of individuals with severe obesity during PA when physically active in everyday life after intervention has ended. OBJECTIVE: to explore the experiences of being physically active among individuals with severe obesity in everyday life 18 months after the start of a lifestyle intervention. DESIGN: a qualitative longitudinal study of individual follow-up interviews founded in hermeneutic phenomenology and an existential lifeworld theory of suffering and well-being. The study was approved by the Danish Data Protection Agency (J. no. 1-16-02-425-15). SETTING: Interviews were conducted by the same interviewer in the participants' home environment across three of five regions in Denmark. PATIENTS: Ten adults with severe obesity (BMI>40kg/m2) previously recruited from a public lifestyle intervention program. RESULTS: The analysis revealed that females and males emphasised different experiences of being active in everyday life. The females experienced 'Appreciation of process and vitality' and the males experienced 'The challenge of an active and joyful living'. One common main theme emerged: 'Fluctuating mood' was found to influence physical activity level. CONCLUSIONS: The study highlights the experiences of well-being in relation to staying physically active after lifestyle intervention. The fluctuations in mood were part of everyday life and it was an on-going challenge to balance mood in order to keep up the efforts. The ability to find settlement and modify PA expectations was part of feeling capable. Healthcare providers are suggested to address well-being in mood to help patients become and stay physically active in everyday life.

Being active when living within a large body: experiences during lifestyle intervention.

Background: In-depth understanding of the experiences of both well-being and suffering in relation to being severely obese and becoming active through lifestyle intervention is lacking.Aim: to explore and describe adults' existential experiences of being active, when living within a large body-before and during a lifestyle intervention.Methods: A longitudinal design of repeated individual interviews with 16 adults with BMI ≥40, based on hermeneutic phenomenology, existential philosophy and a theory of well-being was performed. The study was approved by the Danish health authorities.Results: Two dimensions of experiences were found; "Living within a downward spiral" and "Striving for enjoyment and settlement". The themes describing suffering were: 'Sense of being thwarted and defeated ' and "Tackling energy depletion and impact of sense of self". The themes describing well-being were: "Hoping for renewal and energised resoluteness" and "Enduring discomfort and feeling safe".Conclusions: Interacting existential experiences can be facilitators or barriers for physical activity. It seems relevant for health care providers to address the individual's lifeworld experiences of well-being, lack of well-being and suffering. Well-being as a sense of feeling "at home" when physically active may break down an inactivity spiral. Promoting well-being is a legitimate aim of lifestyle intervention.

The lived experiences of being physically active when morbidly obese: A qualitative systematic review.

The aim is to identify facilitators and barriers for physical activity (PA) experienced by morbidly obese adults in the Western world. Inactivity and a sedentary lifestyle have become a major challenge for health and well-being, particularly among persons with morbid obesity. Lifestyle changes may lead to long-term changes in activity level, if facilitators and barriers are approached in a holistic way by professionals. To develop lifestyle interventions, the perspective and experiences of this group of patients are essential for success. The methodology of the systematic review followed the seven-step procedure of the Joanna Briggs Institute and was published in a protocol. Six databases were searched using keywords and index terms. Manual searches were performed in reference lists and in cited citations up until March 2015. The selected studies underwent quality appraisal in the Joanna Briggs-Qualitative Assessment and Review Instrument. Data from primary studies were extracted and were subjected to a hermeneutic text interpretation and a data-driven coding in a five-step procedure focusing on meaning and constant targeted comparison through which they were categorized and subjected into a meta-synthesis. Eight papers were included for the systematic review, representing the experiences of PA among 212 participants. One main theme developed from the meta-data analysis: "Identity" with the three subthemes: "considering weight," "being able to," and "belonging with others." The theme and subthemes were merged into a meta-synthesis: "Homecoming: a change in identity." The experiences of either suffering or well-being during PA affected the identity of adults with morbid obesity either by challenging or motivating them. A change in identity may be needed to feel a sense of "homecoming" when active.