Children with intellectual disabilities placed in residential services face challenges in making their voices heard and expressing their support needs. It is important to understand how these children can be more involved in their support arrangements. This study utilises secondary data from group interviews and child case studies to investigate child involvement in the design and delivery of support, and staff actions concerning support development related to child involvement when a support development programme is realised. The analysis used the theoretical model of Doing to, Doing for, and Doing with to explore the level of involvement in supporting the children. The findings demonstrate that a person-centred support development programme can foster child involvement in residential services across different levels, despite children’s varying capacities. This includes staff understanding of those capacities, which pose challenges to involvement. Organisational support for working methods and competence increases the opportunity for residential staff to give children a voice in co-design and co-delivery, in line with children’s capacity.

This study aims to critically compare and analyze relevant frameworks used in improvement science in order to examine how they address complexity as well as the contextual, social, and relational mechanisms that shape healthcare improvement. The study adopts a qualitative approach and is based on a comparative analysis of ten frameworks: KTA, CAIMeR, SHIFT, CAF, CAMM, CFIR, HPCM, IMQSE, NASSS and LHS. These frameworks were examined through a conceptual lens informed by theories of complexity as well as contextual, social, and relational mechanisms that shape healthcare improvement in practice. The findings reveal a fragmented conceptual landscape within improvement science, demonstrating substantial variation in how the frameworks address complexity and the contextual, social and relational mechanisms. A key observation is that most frameworks only partially and implicitly capture the complexity of healthcare systems, without clearly articulating how complexity influences improvement processes. This pattern is reflected in the overall results. One possible explanation is that many of the frameworks originate from fields such as Implementation Science and Health Informatics. However, this origin has implications when viewed from a Quality 3.0 perspective. Notably, Co-production in healthcare is largely absent from the analyzed frameworks. In addition, limited attention is given to the interactions between micro-, meso- and macro perspectives, which challenges the fundamental system perspective in healthcare improvement. In conclusion, the analyzed frameworks do not fully reflect the complexity of healthcare systems. Although many frameworks acknowledge contextual factors, fewer explicitly address the relational and social mechanisms through which healthcare improvement is enacted in practice.

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.