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BACKGROUND: Living with gout impacts most dimensions of life. However, there is a lack of studies exploring the trajectory of patients' experiences of living with and being treated for gout, beyond the experiences during a flare. This study aimed to explore how individuals with gout experience the disease, its effects on daily life and their encounters with healthcare.

METHODS: A constructivist grounded theory was used, involving simultaneous data collection and analysis. Semi-structured individual interviews were conducted with 12 individuals living with gout and aged between 40 and 87 in Central Sweden.

RESULTS: Navigating the uncertainty of living with gout was represented through two categories: 'a mismatch between individuals' needs and the provision of care' and 'a process of adaptation'. The mismatch involved unmet needs for pain relief, feeling dismissed as having a minor condition and a lack of personalised care. The adaptation process included seeking explanations, developing self-management strategies and adjusting to pain and functional limitations.

CONCLUSIONS: Living with gout entails a significant degree of uncertainty. The process of adaptation is affected by a mismatch between individuals' needs and the care provided, in addition to the disease's 'roller coaster' nature and its slow progression.

PATIENT AND PUBLIC CONTRIBUTION: This study is part of a research project aimed at gathering knowledge essential for developing an intervention in primary care. A patient, appointed by the Swedish Rheumatism Association, is actively participating in the project's research group. The results of this study have been discussed and analysed within the research group, including input from the patient participant.

INTRODUCTION: Participatory, emergent, and reflective approaches are needed in research on person-centred integrated care. This paper describes and explores the process of developing a complex care transition intervention for stroke survivors, along with the lessons learned.

DESCRIPTION: This study concerns the Missing Link project, which aimed to develop and evaluate a care transition intervention from hospital to home. The care transition was developed according to the Medical Research Council (MRC) Framework and included studies on context, co-design workshops, and prototype development.

DISCUSSION: The development process faced challenges relating to understanding the emergence within the studied context and the complex adaptive systems. We failed to have a continuous and sustained involvement of healthcare professionals, patients, and significant others during the different phases of the project. Hence, a lack of shared understanding is conceivable as the emergence might have been interpreted and understood differently by the actors.

CONCLUSION: Challenges in achieving shared understanding throughout the project underline the importance of investing in relationship building, meaningful interaction, and continuous feedback loops. While the MRC framework provides guidance for developing complex interventions, the phased approach may only partially capture the emergence and self-organisation within complex adaptive systems.

BACKGROUND: Stroke and other acquired brain injuries (ABIs) can present challenging experiences for individuals, both in recovery of functions affected by visible or invisible impairments and in learning to live with the new situation. Research has shown that sharing experiences face-to-face in peer groups can be beneficial during recovery. However, there is limited knowledge about the lived experiences of people with ABI who participate in online peer-to-peer groups.

OBJECTIVE: The aim of our study was to explore the lived experiences of participating in online peer-to-peer groups for people with ABI, where participants themselves set the agenda.

METHODS: Members of 2 Facebook groups (FBGs) for people with ABI were invited to participate in this study, and 20 individuals were included (14 women and 6 men; age range 24-74 years). One FBG focused on stroke and the other on fatigue caused by ABI. One group was private, and the other group was public. Data were collected through semistructured interviews, in which participants were encouraged to describe their experiences of engaging in FBGs in detail. The interviews were conducted over telephone or Zoom and digitally recorded. The audio recordings were then transcribed verbatim, resulting in 224 pages of text, and analyzed using the empirical phenomenological psychological method.

RESULTS: The analysis presented a common meaning structure with 1 main characteristic that is, "validating self," common for all 20 participants, and 3 subcharacteristics, that is, "learning-having one's own experiences confirmed," "adjusting self-building competence and self-compassion," and "supporting others-becoming a valued lived-experience expert/authority." Together, the subcharacteristics reflected a process of validating self from newcomer to lived-experience expert or authority. In this process, members of FBGs moved from being newcomers with pronounced needs for support and to learn and to have their experiences confirmed by others with similar experiences. Thus, participants were building competence and developing self-compassion. Gradually, they assumed the role of advisors, mentors, or coaches, acknowledging their experiences and competence as valuable to others, thereby validating themselves as compassionate lived-experience experts or authorities in supporting others.

CONCLUSIONS: Participation in online peer-to-peer groups can offer unique opportunities for individuals with ABI to validate self through processes that involve learning, developing self-compassion and compassion for others, and offering support to others with similar experiences. Given that rehabilitation after an ABI is often of limited duration and that positive experiences can be achieved over time through involvement in digital peer-to-peer support, health care professionals should assist patients by providing information and directing them to digital networks for people with ABI. However, when recommending the use of online peer-to-peer support, impairments and insufficient digital competence that may complicate or prevent the use of social media should be assessed and support provided when relevant.

INTRODUCTION: Care transitions following a stroke call for integrated care approaches to reduce death and disability. The proposed research described in this study protocol aims to evaluate the effectiveness of a person-centred multicomponent care transition support and the process in terms of contextual moderators, implementation aspects and mechanisms of impact.

METHODS: A non-randomized controlled trial design will be used. The intervention includes person-centred dialogue intended to permeate all patient-provider communication, various pedagogical modes of information, a person-centred care and rehabilitation plan, and a bridging e-meeting to prepare patients for homecoming. Patients with stroke or TIA who are to be discharged from the participating hospitals to home and referred to a neurorehabilitation team for continued rehabilitation will be included. Follow-ups will be conducted at one week, 3 months and 12 months. Data will be collected on the primary outcome of perceived quality of the care transition, and on the secondary outcomes of health literacy, medication adherence, and perceived person-centeredness. Data for process evaluation will be collected through semi-structured interviews, focus groups, participatory observations, and the Normalisation Measure Development Questionnaire.

DISCUSSION: The study will provide insights on implementation, mechanisms of impact, contextual moderators, and effectiveness of a care transition support, targeting a poorly functioning part of the care trajectory for people with stroke and TIA.

CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT05646589.

Introduction: Healthcare in Sweden is moving towards a more person-centred approach in which patients are respected as capable individuals with unique needs. Partnership, the co-creation of health plans, and documentation are core components of this approach. The ambulance service is medical- and task-oriented, possibly placing it in conflict with the goals of person-centred care (PCC).

Aim: To explore how nurses in the Swedish ambulance service describe PCC.

Method: A qualitative interview study with eight nurses who served as facilitators for implementing ambulance PCC. Data was analysed using content analysis.

Findings: The analysis resulted in the main category Ambulance PCC is diffuse but applicable and in the three categories: Do good based on an ethical approach, Assemble the patient's narrative from multiple sources and Create and agree on a plan.

Conclusion: Ambulance PCC is perceived as a diffuse concept, with unclear translation into practice. The findings highlight the need to determine appropriate levels of care, manage technical equipment without disrupting communication and embody attributes such as calmness and empathy. Despite its ambiguity, ambulance PCC was seen as applicable across all care stages, although requiring adjustments based on urgency, individual circumstances and care setting.

OBJECTIVES: Our aim was to describe the time and costs used during the implementation of a more person-centred care (PCC) approach as part of ordinary practice.

DESIGN: A case study with embedded units.

SETTING: Region Dalarna, Sweden.

PARTICIPANTS: The Department for Development (DD) staff who provided a central support function in the implementation and six healthcare units: nephrology, two geriatric care and rehabilitation units, two psychiatry units and primary care.

INTERVENTIONS: More PCC.

PRIMARY AND SECONDARY OUTCOME MEASURES: Working days and related salary costs reported by categories indicating costs for implementation strategies, service delivery, and research/development costs.

RESULTS: The healthcare units logged on average 5.5 working days per staff member. In the healthcare units, 6%-57% of the time reported was used for implementation strategies, 40%-90% for service delivery and 2%-12% for research/development. Of the time reported by the DD, 88% was assigned to implementation strategies. Costs associated with reported time indicated 23% of costs for this implementation occurred in the DD. Using the budgeted cost, this proportion increased to 48%. The budget for the DD corresponded to SEK 2.30 per citizen per year and 0.009% of the total healthcare budget of the region.

CONCLUSIONS: The study found that a large part of resources used for this implementation of more PCC occurred in the DD, although at least half of the costs occurred in the healthcare units. Moreover, the cost of providing a central support function corresponds to a tiny proportion of the total health budget.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is one of the most common and deadliest chronic diseases of the 21st century. eHealth tools are seen as a promising way of supporting health care professionals in providing evidence-based COPD care, for example, by reinforcing information and interventions provided to the patients and providing easier access and support to the health care professional themselves. Still, knowledge is scarce on the experience of using eHealth tools from the perspective of the health care professional involved in COPD management.

OBJECTIVE: The study explored the experiences of using an eHealth tool among health care professionals that worked with patients with COPD in their daily clinical practice.

METHODS: This exploratory qualitative study is part of a process evaluation in a parallel group, controlled, pragmatic pilot trial. Semistructured interviews were performed with 10 health care professionals 3 and 12 months after getting access to an eHealth tool, the COPD Web. The COPD Web, developed using cocreation, is an interactive web-based platform that aims to help health care professionals provide health-promoting strategies. Data from the interviews were analyzed using qualitative content analysis with an inductive approach.

RESULTS: The main results reflected health care professionals' experiences in 3 categories: receiving competence support and adjusting practice, improving quality of care, and efforts required for implementation. These categories highlighted that using an eHealth tool such as the COPD Web was experienced to provide knowledge support for health care professionals that led to adaptation and facilitation of working procedures and person-centered care. Taken together, these changes were perceived to improve the quality of care through enhanced patient contact and encouragement of interprofessional collaboration. In addition, health care professionals expressed that patients using the COPD Web were better equipped to tackle their disease and adhered better to provided treatment, increasing their self-management ability. However, structural and external barriers bar the successful implementation of an eHealth tool in daily praxis.

CONCLUSIONS: This study is among the first to explore experiences of using an eHealth tool among health care professionals involved in COPD management. Our novel findings highlight that using an eHealth tool such as the COPD Web may improve the quality of care for patients with COPD (eg, by providing knowledge support for health care professionals and adapting and facilitating working procedures). Our results also indicate that an eHealth tool fosters collaborative interactions between patients and health care professionals, which explains why eHealth is a valuable means of encouraging well-informed and autonomous patients. However, structural and external barriers requiring time, support, and education must be addressed to ensure that an eHealth tool can be successfully implemented in daily praxis.

TRIAL REGISTRATION: ClinicalTrials.gov NCT02696187; https://clinicaltrials.gov/ct2/show/NCT02696187.

Background. Involving people with acquired brain injury in service development has the potential to improve service and give experience-based knowledge legitimacy. The objective of this study was to explore experiences of sharing experience-based knowledge of living with acquired brain injury with others, with a particular focus on the conditions for sharing and learning, and the legitimacy of experience-based knowledge. Materials and Methods. Using a single case study design, the processes in two groups that were part of a Swedish supportive network for people with acquired brain injury were explored. One group consisted mainly of people with acquired brain injury who authored a blog and the other group consisted of healthcare staff who produced educational material with the involvement of a person with own experience of acquired brain injury. The data consisted of forty-one collective blogs, fifteen semistructured individual interviews, and ten observations from meetings. The data were analysed by utilizing the community of practice framework and the concepts of legitimate peripheral participation and epistemic injustice. Results. The findings showed that both groups developed learning processes with a focus on everyday rehabilitation as a joint enterprise. Mutual engagement developed from doing activities together and legitimacy in the groups came from engagement in these activities. In the education group, the ambition to involve people with own experience of acquired brain injury was never realized in practice. Hence, experience-based knowledge of living with acquired brain injury never got legitimacy in the group. Conclusions. We conclude that integrating experience-based knowledge from people with own experience of acquired brain injury demands careful and deliberate planning with specific consideration to existing power asymmetries between healthcare professionals and people with own experience. Mitigating epistemic injustice and gaining legitimacy for such knowledge require that people with experience of living with acquired brain injury are recognized as knowledge producers. © 2023 Lill Hultman et al.

BACKGROUND: Research shows that interventions to protect the sensitive physiological process of birth by improving the birthing room design may positively affect perinatal outcomes. It is, however, crucial to understand the mechanisms and contextual elements that influence the outcomes of such complex interventions. Hence, we aimed to explore care providers' experiences of the implementation of a new hospital birthing room designed to be more supportive of women's birth physiology.

METHODS: This qualitative study reports on the implementation of the new birthing room, which was evaluated in the Room4Birth randomised controlled trial in Sweden. Individual interviews were undertaken with care providers, including assistant nurses, midwives, obstetricians, and managers (n = 21). A content analysis of interview data was conducted and mapped into the three domains of the Normalisation Process Theory coding manual: implementation context, mechanism, and outcome.

RESULTS: The implementation of the new room challenged the prevailing biomedical paradigm within the labour ward context and raised the care providers' awareness about the complex interplay between birth physiology and the environment. This awareness had the potential to encourage care providers to be more emotionally present, rather than to focus on monitoring practices. The new room also evoked a sense of insecurity due to its unfamiliar design, which acted as a barrier to integrating the room as a well-functioning part of everyday care practice.

CONCLUSION: Our findings highlight the disparity that existed between what care providers considered valuable for women during childbirth and their own requirements from the built environment based on their professional responsibilities. This identified disparity emphasises the importance of hospital birthing rooms (i) supporting women's emotions and birth physiology and (ii) being standardised to meet care providers' requirements for a functional work environment.

TRIAL REGISTRATION: ClinicalTrials.gov: NCT03948815, 14/05/2019.

The study aimed to investigate whether a structured discharge letter and the use of the person-centred communication method Teach Back for sharing information at hospital discharge could support perceived understanding and knowledge of and adherence to prescribed medication for secondary prevention after stroke. Data from a feasibility study of a codesigned care transition support for people with stroke was used. Patients who at discharge received both a structured discharge letter and participated in the person-centred communication method Teach Back (n = 17) were compared with patients receiving standard discharge procedures (n = 21). Questionnaires were used to compare the groups regarding perceived understanding of information about medical treatment, knowledge of information about medical treatment and medication adherence at 1 week and 3 months. There was a statistically significant difference in perceived understanding of information about medical treatment (p > 0.01) between the groups in favour of those who participated in Teach Back at the discharge encounter. No differences between groups were found regarding understanding health information about medical treatment and medication adherence. The results indicate that the use of Teach Back at the discharge encounter positively impacts perceived understanding of information about medical treatment in people with stroke. However, considering the nonrandomised study design and the small sample size, a large-scale trial is needed.