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: Diabetic foot ulcers (DFUs) are common and serious complications in diabetes. To avoid DFUs, identification of at-risk patients through a structured foot assessment leading to appropriate risk classification is essential. However, this is often lacking in clinical practice. This study aimed to identify barriers and facilitators to guideline adherence in diabetic care and to increase the proportion of diabetic patients who receive a foot risk classification. Methods: This quantitative evaluation of improvement interventions was conducted at a department of prosthetics and orthotics (DPO) in the south of Sweden. To identify barriers and facilitators to guideline adherence and identify potential interventions, the authors used the COM-B (Capability, Opportunity, Motivation, and Behaviour) framework and qualitative interviews designed as one pilot interview and two focus group sessions with practitioners at the DPO. To improve guideline adherence, the research team implemented several interventions targeting behaviour over multiple Plan-Do-Study-Act cycles where training, education, and easily accessible material were incorporated. Eligible patients at risk of DFUs were identified by means of their medical journal. The candidates were referred to the DPO to be provided with preventive offloading devices. Results: The frequency of patients receiving a foot examination and risk classification increased from 32.0% to 61.9%. Practitioners described the perception of increased patient safety as a facilitator of adherence to the clinical guidelines, while time limitation and insufficient knowledge were perceived as barriers. Conclusion: To ease implementation of evidence-based guidelines in diabetes, clinics must address behavioural mechanisms related to adherence. The result adds further knowledge about enablers and barriers in clinical practice. Future research should focus on the clinical outcomes of improvement efforts in diabetes care in DPOs to avoid DFUs.

Background/Objectives: One of the risk groups during the COVID-19 pandemic was people with predominantly antibody deficiencies (PADs) that have a compromised immune system. In the absence of evidence and clinical experience, there were challenges for patients in their daily life and for staff in counseling during this time. Therefore, the aim of this study was to explore the experiences of PAD patients and nurses during the COVID-19 pandemic.

Methods: Focus group interviews with patients (n = 12) and nurses (n = 12) were performed separately, which were then analyzed using content analysis.

Results: The daily life of PAD patients was affected during the pandemic, with concerns about becoming seriously ill. Social isolation and adherence to recommendations by the majority of the Swedish population resulted in patients feeling infectiously healthier during this period. The rapid transition of specialist care to telemedicine care encounters was an important measure taken to address patients' concerns and questions according to both patients and nurses. In addition, patients expressed a need for a coordinated care plan to facilitate access to integrated care.

Conclusions: The high level of trust for authorities in Sweden was related to the high compliance with the recommendations, which reduced the spread of the infection. The role of specialized care is an important support for PAD patients, which was particularly evident during the pandemic. Information transfer to a specific risk group, such as people with PADs, is important and can usefully be coordinated by their specialist clinic. Telemedicine meetings are an important complement for people with PADs and need to be further elaborated. Also, there is a need to clarify how to better coordinate primary and specialized care.

Objectives

The International Classification of Functioning, Disability and Health (ICF) offers a standardised language to inform goal setting, support interventions and follow-up on personal functioning outcomes. There is a lack of knowledge about how ICF can be used in practice in residences providing special services for children with intellectual disabilities. This study explores programme theory when ICF categories were integrated into a support development programme to facilitate systematic follow-up on child-individual support interventions in residences with special services.

Methods

The study employs a realist evaluation design, utilising data from individual child case studies, group interviews, and field notes.

Results

The findings show that ICF-based follow-up can enable staff to connect personal outcome measures to goals, facilitate infrastructure for measurement and follow-up, create learning and can promote action to improve the children′s support. Implementation challenges arose due to an unpredictable and demanding work environment, as well as difficulties in applying ICF categories across various aspects.

Conclusions

The findings can inform future research regarding working methods as well as disability care organisations striving to develop evidence-based practices. Program design should respect staff workload and minimize elements that add unnecessary complexity to daily tasks.

HUVUDBUDSKAP

• Det finns ett stort antal patientrapporterade utfallsmått (PROM). Trots att de behövs som komplement till medicinska mått för en personcentrerad vård används de alltför sällan.
• PROM kan användas för att identifiera vårdbehov, utvärdera behandlingseffekter samt följa förändring över tid.
• Användning av PROM kräver kunskap om varför de behövs, vad de mäter och hur data kan analyseras och användas.
• Integrering av PROM i journalsystemen är avgörande för deras användning i vårdens vardag.
• Det kräver prioritering av PROM vid automatiserad överföring från 1177.se till patientjournal vid insamling av hälsodata inom Nationell kunskapsstyrning samt lösning av juridiska och tekniska hinder för deras användning i kvalitetsregister.

PROMs provide valuable information from patients about their health and health-related problems. These measures complement medical measures and are critical for developing optimized, co-produced and person-centred healthcare, as they add important perspectives, offering a holistic view of health. Valid and reliable PROMs have been developed since a long time and are increasingly used in research. Digital PROMs are today available at 1177.se but seldom utilized in clinical practice. To utilize PROMs in clinical care, healthcare professionals need to understand their value and how to analyse data and use results. Therefore, to support the increased interest to implement PROMs, this knowledge needs to be disseminated among all professionals. In order to effectively use PROMs in improvement work, we also need to address significant technical and legal obstacles. Integrating PROM data into electronic medical records should be prioritized in the ongoing development of infrastructure for health data collection.

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).

Children with intellectual disability receiving residential support, according to the Swedish Disability Act, need substantial support to cope with everyday life. These children have cognitive and communicative limitations, entailing difficulties for staff in consulting the children regarding their support arrangements. In addition, due to lack of research there are knowledge gaps and uncertainties concerning how staff can provide the children's support. To deliver high qualitative support, research suggests that disability organisations should (1) continuously work with quality improvement, (2) adopt a multi-dimensional framework that explains human functioning and disability as a basis for understanding individual support needs, and (3) use person-centred approaches. Based on these principles, this study has applied a realist evaluation to identify enablers and barriers during the implementation of an improvement programme aimed at improving staff's ability to provide support to children living in special residences.

Introduction: Living with a chronic condition such as type 1 diabetes (T1D) affects everyday life and support from others experiencing a similar situation can be helpful. A way to receive such support is to use an online network where people can connect and share experiences. Research has described the benefits of using such tools for connecting patients. The aim of this study was to describe the co-design of a social network for young people with T1D and to describe their experiences when using this network.

Methods: A co-design approach was used, following three steps adapted from Sanders and Stappers (2008). In all, 36 adolescents with T1D participated. Data in the form of recordings and notes from telephone interviews, workshops and focus groups were collected and then analysed using content analysis. Numerical data from the digital platform were also used.

Findings: For the interpersonal values, supporting, learning and relating to emerge, the framework of the network must be appealing and user-friendly. The limits of time and place are eliminated, and there is a possibility for many more to join in.

Conclusion: Co-design ensures that what stakeholders think is important forms the basis for the design. The interpersonal values that are promoted are ones that only the exchange of lived knowledge and experience can generate. It is complementary to the support that healthcare professionals can offer; thus, this kind of social network is important for improved, coproduced care.

Patient or Public Contribution: The participants in the present study were persons living with T1D. They were active co-creators from the start to the end. An adult person with experience of living with T1D was involved as an advisor in the research team when drafting the manuscript.

BACKGROUND: Diabetes self-management education and support (DSMES) is a cornerstone in the treatment of type 2 diabetes mellitus (T2DM). It is unclear whether delivering DSMES as a digital health intervention (DHI) might meet the needs experienced by patients with T2DM and diabetes specialist nurses (DSN) of the primary health care system in Sweden. METHODS: Fourteen patients with T2DM and four DSN participated in three separate focus groups: two groups comprised patients and one group comprised DSN. The patients discussed the questions: "What needs did you experience after your T2DM diagnosis?" and "How might these needs be met with a DHI?" The DSN discussed the questions: "What needs do you experience when treating a patient with newly diagnosed T2DM?" and "How might these needs be met with a DHI?". Furthermore, data were collected in the form of field notes from group discussions at a meeting including 18 DSNs working with T2DM in PHCCs. The discussions from focus groups were transcribed verbatim and analyzed together with the field notes from the meeting using inductive content analysis. RESULTS: The analysis yielded the overall theme: "Overcoming the struggle of living with T2DM", which was summarized in two categories: "learning and being prepared" and "giving and receiving support". Important findings were that, for success, a DHI for DSMES must be integrated into routine care, provide structured, high-quality information, suggest tasks to stimulate behavioral changes, and provide feedback from the DSN to the patient. CONCLUSION: This study highlighted several important aspects, from the perspectives of both the patient with T2DM and the DSN, which should be taken into consideration for the successful development and use of a DHI for DSMES.