BACKGROUND: Patient involvement occurs at multiple levels of the healthcare system, at micro (patient consultations), meso (team-based collaboration within hospital departments), and macro (shaping policies and governance structures) levels, but research has predominantly focused on the micro level. In Sweden, patient involvement is a core component of the Swedish National System for Knowledge-driven management (NSK), a macro-level initiative. However, little is known about how patient involvement is enacted in practice at this level. This study aimed to explore patient involvement within the Swedish NSK in terms of motives, intentions and suggested progressions. To support the interpretation, we applied a theoretical framework to identify “work” as characterized in four different varieties; work as imagined; work as prescribed; work as disclosed and work as done. METHODS: A qualitative research design was used. Data sources included: (1) steering documents outlining formal policies and strategic goals; (2) interviews with key stakeholders to gather individual experiences and reflections; and (3) non-participant observations from two national working group meetings. Each dataset was first analyzed separately using content analysis and then interpreted through the lens of the Shorrock and Williams framework to enable cross-source synthesis. RESULTS: Data from documents, interviews, and observations aligned with three of the four varieties of work; Steering documents primarily reflected Work as Imagined, describing formal intentions and governance structures for patient involvement. Stakeholder narratives were largely categorized as Work as Disclosed, capturing personal interpretations, challenges, and enacted experiences. Work-as prescribed was related to the process of collaboration with patient organizations, which also contributed to the recruitment of two patient representatives. Observational data offered limited but insightful examples of Work as Done, revealing how patient involvement was performed in practice during meetings. CONCLUSIONS: This study demonstrates the value of combining diverse data sources and applying structured theoretical lens for analyses to better understand how patient involvement is operationalized at the macro level, i.e. how policy intentions are turned into concrete actions, rules and structures. Analyzing observed activities provides essential insight into Work as Done, helping to bridge the gap between policy and practice and invites further exploration. Furthermore, the findings contribute to the refinement of the Shorrock and Williams framework by empirically illustrating its applicability in healthcare services research.

Background Patient involvement occurs at multiple levels of the healthcare system—micro, meso, and macro—but research has predominantly focused on the micro level. In Sweden, patient involvement is a core component of the national system for knowledge-driven management (KMS), a macro-level initiative. However, little is known about how patient involvement is enacted in practice at this level. This study aims to explore the manifestations of patient involvement within the Swedish KMS by analyzing policy documents, stakeholder narratives, and observations from national working groups. To support interpretation, we applied the theoretical framework developed by Shorrock and Williams (2016), which distinguishes between four varieties of work: Work as Imagined, Prescribed, Disclosed, and Done. Methods A qualitative research design was used to capture this complex, context-dependent phenomena. Data sources included: (1) steering documents outlining formal policies and strategic goals; (2) interviews with key stakeholders to gather individual experiences and reflections; and (3) non-participant observations from two national working group meetings. Each dataset was first analyzed separately using content analysis and then interpreted through the lens of the Shorrock and Williams framework to enable cross-source synthesis. Results Data from documents, interviews, and observations aligned with three of the four varieties of work in the framework. Steering documents primarily reflected Work as Imagined, describing formal intentions and governance structures for patient involvement. Stakeholder narratives were largely categorized as Work as Disclosed, capturing personal interpretations, challenges, and enacted experiences. Observational data offered limited but insightful examples of Work as Done, revealing how patient involvement was performed in practice during meetings. Conclusions Analyzing observed activities provides essential insight into Work as Done, helping to bridge the gap between policy and practice. The study demonstrates the value of combining multiple data sources and applying a structured theoretical lens to better understand how patient involvement is operationalized at the macro level. Furthermore, the findings contribute to the refinement of the Shorrock and Williams framework by empirically illustrating its applicability to health system research.

Abstract Background When the 21 Swedish county councils decided to collaborate in the creation of a national system for knowledge-based management, patient participation was mandatory. Patient and next-of-kin representatives (PR) co-produced person-centred and cohesive clinical pathways together with healthcare professionals (HPR). Research on co-production in healthcare at the national level is scarce. The aim of this study is to explore experiences of patient participation from the perspectives of both PRs and HPRs when co-producing clinical pathways within the Swedish nationwide healthcare system for knowledge-based management. Methods A qualitative study was conducted. A strategic sample of nine PRs and eight HPRs were interviewed individually between August 2022 and January 2023 using a semi-structured interview guide. We analysed data using an inductive content analysis. Results Three main categories were identified: (1) Finding appropriate patient representativeness; (2) Working methods that facilitate a patient perspective; and (3) Influence of the patient perspective in the clinical pathways. Conclusions The study demonstrates the importance of patient and next-of-kin participation in the construction of clinical pathways at the national level. The results provide a platform for further research on patient participation on the national level and add to studies on if and how patient participation on this level has an impact on how the clinical pathways are put into practice at the micro level, and the support provided at the meso level. The study contributes to the growing body of literature studying patient participation and co-production. Trial registration Region Örebro County ID 276,940. An advisory opinion was obtained from the Swedish Ethical Review Authority (2021-05899-01).

Although the implementation of person-centred care (PCC) has gained momentum in healthcare systems, it is not always obvious why it is an important objective in clinical settings and educational institutions that train future healthcare professionals. Various conceptions about PCC have flourished, such as that it only works in certain healthcare contexts, it is the same as the patient making all their own healthcare decisions, it is too demanding for most patients, the word 'patient' may no longer be used, the care provided is already person-centred, and that there is simply not enough time and resources to achieve it. This viewpoint paper aims to problematize these conceptions and may be used for didactical and reflective exercises that support the transition towards more person-centred healthcare. PATIENT OR PUBLIC CONTRIBUTION: The Person Council for patients and carers at the University of Gothenburg provided focus group input on and validated the occurrence of the conceptions discussed in the present paper. The person council consists of a group of persons with many years of personal experiences of health care, either as patients and/or relatives/carers. One member of the person council who is also a designer and artist created the illustration for the article.

Within community-engaged research, education and social care, peer models that partner with local "insiders" are increasingly common. Peer models are composed of insider "lay" community members who often share similarities or background with a project's target population. Peers are not academically trained, but work alongside researchers and professionals to carry out specific tasks within a project, or in the truest sense of partnership, peers collaborate throughout the project from start to finish as an equal member of the team. Although peer models are used widely, the literature lacks consistency and clarity. This systematic review of literature used a qualitative thematic synthesis to examine and report how, where and why peer models have been used in research, education and social care. We examined the language and titles used to describe the peers, details of their involvement in community-engaged projects, the setting, content/topic of study, level of engagement and related benefits/outcomes of such models. Focusing on the last 10 years, we conducted a comprehensive literature search twice between September 2016 and June 2017. The search resulted in 814 articles which were assessed for eligibility. Overall, 251 articles met our inclusion criteria and were categorised into three categories: empirical (n = 115); process/descriptive (n = 93); and "about" peers (n = 43). Findings suggest that there is a wide variety of peers, titles and terminology associated with peer models. There is inconsistency in how these models are used and implemented in research studies and projects. The majority of articles used an employment peer model, while only a handful involved peers in all phases of the project. The results of this literature review contribute to understanding the use, development and evolution of peer models. We highlight potential benefits of peer models for peers, their communities and community-engaged work, and we offer recommendations for future implementation of peer models.

BACKGROUND:Updated knowledge about survival after coronary artery bypass graft (CABG) surgery is needed. We examined 20-year trends in 4-year survival after a first isolated CABG procedure, compared with that of the general population. METHODS:We identified 94,328 patients surviving 30days after a first isolated CABG 1987-2006 from the Swedish Inpatient Register. RESULTS:Crude annual mortality rates remained stable at approximately 1% in patients aged 18-54years and at approximately 2% in those aged ≥55years. After adjustment for comorbidities, 4-year survival in men aged 18-54 and ≥55years improved by 37% (HR: 0.63, 95% CI, 0.46-0.88) and 31% (HR: 0.69, 95% CI, 0.63-0.76), respectively, (1987-1991 vs. 2002-2006). The corresponding estimate for women aged ≥55years was 38% (HR: 0.62, 95% CI, 0.52-0.75), with no significant change in survival in women aged <55years (HR: 1.02, 95% CI, 0.52-2.03). Men and women aged <55years had higher mortality than the general population, with standardized mortality ratios (SMR) of 1.76 (95% CI, 1.35-2.22) in men and 4.49 (95% CI, 2.74-6.68) in women during the last period (2002-2006). In contrast, patients aged ≥55years had better survival with a SMR of 0.74 (95% CI, 0.70-0.78) in men and 0.82 (95% CI, 0.74-0.91) in women during 2002-2006. CONCLUSION:During 1987-2006, there was a significant improvement in survival after CABG for all categories, except in women aged <55years. Men and women aged ≥55years who survived the first 30days after CABG had a lower mortality risk than the general population.

BACKGROUND:In light of the growing emphasis on individualization in healthcare, it is vital to take the diversity of inhabitants and users into consideration. Thus, identifying shared perceptions among group members may be important in improving healthcare that is relevant to the particular group, but also perceptions of the staff with whom interactions take place. This study investigates how motherhood is perceived among three groups: Somali-born mothers; Swedish-born mothers; and nurses at Swedish child health centers. Inequities in terms of access and satisfaction have previously been identified at the health centers.METHODS:Participants in all three groups were asked to finalize two statements about motherhood; one statement about perfect motherhood, another about everyday motherhood. The responses were analyzed using qualitative coding and categorization to identify differences and similarities among the three groups.RESULTS:The responses to both statements by the three groups included divergences as well as convergences. Overall, biological aspects of motherhood were absent, and respondents focused almost exclusively on social matters. Working life was embedded in motherhood, but only for the Somali-born mothers. The three groups put emphasis on different aspects of motherhood: Somali-born mothers on the community; the Swedish-born mothers on the child; and the nurses on the mother herself. The nurses - and to some extent the Swedish-born mothers - expected the mother to ask for help with the children when needed. However, the Somali-born mothers responded that the mother should be independent, not asking for such help. Nurses, more than both groups of mothers, largely described everyday motherhood in positively charged words or phrases.CONCLUSION:The findings of this paper suggest that convergences and divergences in perceptions of motherhood among three groups may be important in equitable access and utilization of healthcare. Individualized healthcare requires nuance and should avoid normative or stereotypical encounters by recognizing social context and needs that are relevant to specific groups of the population.

Over the last 20 years, a paternalistic view in health care has been losing ground. The question about less asymmetrical positions in the healthcare professional-patient relationship is, for example, being addressed by the increased emphasis on person-centred care, promoted in disciplines such as medicine and nursing. Partnership is considered as a key component in person-centred care. Although the previous studies have addressed the attributes inherent in partnership, there is still potential for further discussion on how the various interpretations of partnership influence their use in healthcare literature. A vague understanding might also affect education and evaluation. As we see it, the philosophical underpinnings of the idea of partnership have not been sufficiently explored and discussed. The study reveals that partnership originates in the term partener defined as a relationship between individuals or groups characterized by cooperation and responsibility. Etymologically speaking, partnership is hence bound by a contract, which in this study is discussed in the frame of Rawls' contract theory, which in turn intersects with Benhabib and her distinction between the abstract and the concrete Other. Further, the expression equal partnership, which often appears in the context of person-centredness, is explored in relation to the philosophies of Rawls and Benhabib. The opportunity for partnership, as well as the risk of partnership becoming a tempting magnet with a vague and imprecise meaning, is discussed. Without exploration, reflection and discussion of the philosophical underpinnings, partnership carries a substantial risk of becoming an indistinct idea used in health care.

Patient education materials have the potential to strengthen the health literacy of patients. Previous studies indicate that readability and suitability may be improved. The aim of this study was to explore and analyze discourses inherent in patient education materials since analysis of discourses could illuminate values and norms inherent in them. Clinics in Sweden that provided colorectal cancer surgery allowed access to written information and ‘welcome letters’ sent to patients. The material was analysed by means of discourse analysis, embedded in Derrida's approach of deconstruction. The analysis revealed a biomedical discourse and a hospitality discourse. In the biomedical discourse, the subject position of the personnel was interpreted as the messenger of medical information while that of the patients as the carrier of diagnoses and recipients of biomedical information. In the hospitality discourse, the subject position of the personnel was interpreted as hosts who invite and welcome the patients as guests. The study highlights the need to eliminate paternalism and fosters a critical reflective stance among professionals regarding power and paternalism inherent in health care communication.

Background: The connection between stress and disease has been part of folk wisdom for a long time and has even made its way into our language with phrases such as ‘scared to death’ and ‘a broken heart’. Takotsubo syndrome is a form of acute, reversible heart failure characterized by ballooning of the left ventricle. Post-menopausal women are primarily affected, but cases have been described in both sexes and at all ages. The complete pathophysiology is unknown, but the disease has been connected to psychological or physical stress and a surge in catecholamines. Despite the strong connection with stress, knowledge about the life of patients before the onset of Takotsubo syndrome is lacking. Aim: The aim of this study was to describe and interpret patients’ narratives about long-term stress experienced before the onset of Takotsubo syndrome. Method: Nineteen people diagnosed with Takotsubo syndrome were interviewed. The narrative interviews were recorded and transcribed verbatim. The resulting texts were analysed using phenomenological hermeneutics. Results: The analysis revealed that the interviewees lived under stressful circumstances, characterized by feeling burdened by responsibilities, injustice and uncertainty, long before the onset of Takotsubo syndrome. This long-term stress wore down the defences of the interviewees to the degree that their capacity was exhausted and the smallest stressor could ‘tip them over the edge’. The findings indicated that the social structure of gender possibly contributed to the interviewees’ condition. Conclusions: These findings indicated that long-term stressful circumstances may cause vulnerability to acute psychological or physical stressors and, subsequently, to the onset of Takotsubo syndrome.

Studies indicate that the time from onset of symptoms to medical treatment has decreased in acute myocardial infarction (AMI). However, there are still variations indicating that women wait longer than men before making the decision to seek medical care. Multidimensional factors hindering and facilitating the decision have been identified in previous studies, though few have fully explored how social context affects women's expectations, interpretations and actions and so influences the decision-making process. The aim of this study was therefore to identify how women's experiences interacted and influenced the decision to seek medical care at their first AMI. Seventeen women, aged 38-75 years, were interviewed, at home or in the hospital, between June 2011 and May 2012. Grounded theory was used as a method, and data collection and analysis were carried out simultaneously. The results showed that before deciding to seek medical care, these women went through three defined but interrelated processes that together hindered their normal activities and made them act according to existential needs. The women's experiences of the progression of the disease, in terms of both symptoms and time, were very different, so they sought medical care at different times, sometimes life-threateningly late and sometimes before developing an AMI. Three mechanisms had to coincide if the women were to receive medical care. First, the women had to acknowledge their symptoms as something more than common bodily changes. Second, the healthcare system had to be accessible when the women made their decision to seek care. Third, the women must have come into contact with healthcare providers when the heart muscle had taken enough damage to measure.

Background: Previous studies have shown that people hesitate to seek medical attention when experiencing the initial symptoms of acute myocardial infarction (AMI), but the reasons why and the events underpinning the decision-making process are unclear. The aim of this study was to describe the actions and experiences involved in the process of seeking medical attention in men with a first AMI.Methods: We studied 21 men, aged 39-73 years, hospitalized with a first AMI between May 2011 and March 2013. All were interviewed in the coronary unit before discharge, with one exception. Data collection and analysis were carried out simultaneously in accordance with grounded theory methodology.Results: Men diagnosed with a first AMI experienced a spectrum of insidious and vague symptoms, which they did not associate with an AMI. This caused uncertainty in how to interpret symptom severity and contributed to a reluctance to seek medical care. Participants also had difficulty interpreting online information when seeking to explain their symptoms. Weighing up and comparing the various experiences during the early stages of AMI proved to be the trigger that changed the men's perspectives and made them aware of the abnormality, the severity of their illness, and the need for action.Conclusion: Healthcare professionals should be aware that men experience a range of insidious and vague symptoms during their first AMI and must give greater emphasis to their narratives, particularly when objective clinical signs are limited or absent. Consideration should be given to the ways laypeople interpret online information when designing healthcare resources for the Internet.

As revealed in previous empirical research, nurses describe their position in home-based nursing care (HBNC) as that of 'guests' in the patient's home. Such a description is problematic as 'guests' might not be considered to belong to the realm of professionalism. As Jacques Derrida's work on hospitality has received wide publicity, sparking theoretical and philosophical discussion about host and guest, the aim of this study was to explore how the concept 'guests' can be understood in the light of Derrida's philosophy of hospitality. The study revealed that (a) guest must be considered a binary concept; and (b) hospitality should be regarded as an exchange of giving and receiving between a host and a guest. The present study demonstrated that it is important to reflect on the meaning of the concepts used by nurses in HBNC. Further theoretical and empirical exploration of the concept 'hospitality' would be fruitful, i.e. what is patients' understanding of 'hospitality' and 'hostility' related to nurses' descriptions of themselves as 'guests' in the patient's home.

BACKGROUNDTotal hip replacement is an operation that usually leads to pain relief and improved health related quality of life (HRQoL). Previous studies have demonstrated the importance of information about upcoming surgery. Therefore, it was of interest to study how both immigrants, whose first language was not Swedish, and Swedish patients described pre-operative information.MATERIAL AND METHODSIndividual interviews were conducted with 10 immigrants and 10 Swedish participants. The data were analysed using qualitative content analysis. The study was carried out in western Sweden from March to November 2010.RESULTSThe findings revealed that pre-operative information for all patients undergoing elective total hip replacement was limited. Patients from both groups expressed concern about inadequate preoperative information pertaining to the surgery, implant selection, pain relief, choice of anaesthesia, no or too short a time to put questions to the surgeon and an overall stressful situation.CONCLUSIONSAdequate preoperative information is important for optimising pain relief and shortening the hospital stay. The fact that the patients overwhelmingly rated the preoperative information as inadequate may be due to several reasons. Mental distress and the two-week interval between the time when the patient received the information and the operation might have contributed to the low degree of retention.

This study describes the care provided by a diabetes nurse specialist, and the care needs expressed by people with type 2 diabetes mellitus and an immigrant background. Clinical encounters between a diabetes nurse specialist and 10 people diagnosed with type 2 diabetes mellitus were observed and analyzed by means of qualitative content analysis. One theme, "the diabetes nurse specialist as the conductor of the visit", and four categories emerged from the findings, illustrating the power imbalance between the patients and the diabetes nurse specialist, as well as the lack of an individual perspective. Shifting from a medical perspective to one of openness towards the people's experiences provides a possibility for caregivers to empower patients suffering from type 2 diabetes mellitus. The medical perspective seemed to steer the visit towards curative activities. Thus, technique-centered care should be developed by including individualized care.

AIMSTo illuminate patients' experiences of being cared for and nurses' experiences of caring for patients in a multiple-bed hospital room.BACKGROUNDMany patients and healthcare personnel seem to prefer single-bed hospital rooms. However, certain advantages of multiple-bed hospital rooms (MBRs) have also been described.METHODEight men and eight women being cared for in a multiple-bedroom were interviewed, and two focus-group interviews (FGI) with 12 nurses were performed. A qualitative content analysis was used.RESULTSOne theme--Creating a sphere of privacy--and three categories were identified based on the patient interviews. The categories were: Being considerate, Having company and The patients' area. In the FGI, one theme--Integrating individual care with care for all--and two categories emerged: Experiencing a friendly atmosphere and Providing exigent care. Both patients and nurses described the advantages and disadvantages of multiple-bed rooms. The patient culture of taking care of one another and enjoying the company of room-mates were considered positive and gave a sense of security of both patients and nurses. The advantages were slight and could easily become disadvantages if, for example, room-mates were very ill or confused. The patients tried to maintain their privacy and dignity and claimed that there were small problems with room-mates listening to conversations. In contrast, the nurses stressed patient integrity as a main disadvantage and worked to protect the integrity of individual patients. Providing care for all patients simultaneously had the advantage of saving time.CONCLUSIONSThe insights gained in the present study could assist nurses in reducing the disadvantages and taking advantage of the positive elements of providing care in MBRs. Health professionals need to be aware of how attitudes towards male and female patients, respectively, could affect care provision.

The aim of this study was to explore metaphors for discovering values and norms held by nurses in home-based nursing care. Ten interviews were analysed and interpreted in accordance with a metaphor analytical method. In the analysis, metaphoric linguistic expressions and two entailments emerged, grounded in the conceptual metaphor ‘home-based nursing care is an endless journey’, which were created in a cross-domain mapping between the two conceptual domains of home-based nursing care and travel. The metaphor exposed home-based nursing care as being in constant motion, thereby requiring nurses to adjust to circumstances that demand ethical maturity. The study focuses on the importance of developing further theories supporting nurses’ expressions of their experiences of everyday ethical issues.