Background

Early diagnosis and modern treatment have changed everyday life of patients with rheumatoid arthritis (RA). However, symptoms are still pronounced several years after diagnosis. The aim of this study is therefore to synthesise the perception of everyday life in men and women with contemporary treated RA over the course of the first decade after diagnosis. This will be achieved by comparing subjective experiences with quantitative measures of disability and disease activity.

Methods

A longitudinal convergent mixed method was used. Thirty-one patients, clinically diagnosed with RA and ≥ 18 years of age, were recruited from the TIRA-2 project in southeast Sweden. Patients were followed over a decade regarding disease activity (DAS28), grip force (Grippit), pain intensity (VAS mm) and activity limitations (HAQ). Participation in valued life activities (VLA-swe) was assessed 10 years after diagnosis. The patients took part in individual interviews three- and ten-years post-diagnosis. Quantitative data were analysed through descriptive analyses and linear mixed models. The interviews were analysed using directed content analyses. The results from the quantitative and qualitative analyses were integrated in accordance with the chosen design.

Results

Discrepancies between the quantitative and qualitative results were revealed, along with differences between sexes. Women expressed more problems related to disease activity and grip force, which did not coincide with the quantitative results. In fact, women experienced difficulties in activities despite decreased disease activity. Furthermore, their pain score changed quantitatively over time, which was not expressed in the interviews. These disconfirming results were not seen in men. Both women and men displayed confirming results regarding activity limitation. Some issues, such as with basic needs, were more visible quantitatively than through interviews.

Conclusions

Men and women with contemporary treated RA still experience disability a decade after diagnosis. Additionally, patients’ experiences and quantitatively measured outcomes do not always coincide. The qualitative data adds information and thereby complements the quantitative data on disability. Our results confirm the importance of person-centred rehabilitation in optimising patients’ possibilities for participation in everyday life.

Clinical trial number

Not applicable.

Background: Patients in old age often have complex care needs owing to multimorbidity and polypharmacy. This qualitative study is part of a larger ongoing Swedish intervention trial Secure And Focused primary care for older pEople (SAFE), including shorter care agreements based on person- centred patient goals.

Aim: To explore, in a primary care setting, the views of older and vulnerable patients on a more systematic, proactive approach to care planning, including establishing and documenting care agreements based on person- centred goals.

Design & setting: Individual semi- structured interviews with patients (n = 25) aged >75 years from 12 intervention primary healthcare centres in two counties in Sweden. Method: Interviews were conducted between June and October 2023. They were digitally recorded and transcribed verbatim. Latent qualitative content analysis was used.

Results: The following three categories, with 10 sub- categories, were found: I would like to live in the present, so why plan ahead? Let me decide versus they know best; and Care agreements usually went unnoticed. The latent theme — The ambivalence of care planning in the fourth age — was created to give a deeper meaning to the content of the categories. 

Conclusion: This study emphasises that older, vulnerable persons have varying attitudes towards participation in proactive care planning. This ambivalence may originate from the individual’s desire to have their autonomy respected and express future care preferences on the one hand, and to avoid or postpone end- of- life conversations and care planning on the other hand. Patients also expressed a desire to be more actively involved in care planning. Although care agreements have the potential to increase patient involvement in proactive care planning, they often went unnoticed. The conversation itself was essential.

Objective: When organising healthcare and planning for research to improve healthcare, it is important to include the patients' own perceptions. Therefore, the aim was to explore older patients' views on what is important concerning their current care and possible future interventions in a primary care setting. Design: A qualitative design with individual interviews was used. Analysis through latent content analysis. Setting: Seven Swedish primary care centres. Subjects: Patients (n 30) aged >75 years, connected to elder care teams in primary healthcare. Results: Three categories, consisting of 14 sub-categories in total, were found, namely: Care characterised by easy access, continuity and engaged staff builds security; Everyday life and Plans in late life. The overarching latent theme Person-centred care with easy access, continuity and engaged staff gave a deeper meaning to the content of the categories and sub-categories. Conclusion: It is important to organise primary care for older people through conditions which meet up with their specific needs. Our study highlights the importance of elder care teams facilitating the contact with healthcare, ensuring continuity and creating conditions for a person-centred care. There were variations regarding preferences about training and different views on conversations about end-of-life, which strengthens the need for individualisation and personal knowledge. This study also exemplifies qualitative individual interviews as an approach to reach older people to be part of a study design and give input to an upcoming research intervention, as the interviews contribute with important information of value in the planning of the Swedish intervention trial Secure and Focused Primary Care for Older pEople (SAFE).

Background Support from significant others is important for participation in everyday life for persons with rheumatoid arthritis (RA). Meanwhile, significant others also experience limitations. Aims To explore how support is expressed by persons with RA and significant others, and how support relates to participation in everyday life of persons with RA. Material and methods Sixteen persons with RA and their significant others participated in individual semi-structured interviews. The material was analyzed using dyadic analysis. Results Persons with RA and significant others reported that RA and support had become natural parts of everyday life, especially emotional support. The reciprocal dynamics of support were also expressed as imperative. Also, support from people outside of the dyads and well-functioning communication facilitated everyday life. Conclusions Significant others and the support they give are prominent factors and facilitators in everyday life of persons with RA. Concurrently, the support persons with RA provide is important, along with support from outside of the dyads. Significance The results indicate that the interaction between persons with RA and the social environment is central to gain insight into how support should be provided for optimal participation in everyday life. Significant others can preferably be more involved in the rehabilitation process.

Objective: To explore frail older persons’ perceptions of the future and the end of life.

Design: Qualitative content analysis of individual semi-structured interviews.

Setting: Nine primary health care centres in both small and middle-sized municipalities in Sweden that participated in the intervention project Proactive healthcare for frail elderly persons.

Subjects/Patients: The study includes 20 older persons (eight women and 12 men, aged 76–93 years).

Main outcome measures: Frail older persons’ perceptions of the future and end of life.

Results: The analysis uncovered two main categories: Dealing with the future and Approaching the end of life. Dealing with the future includes two subcategories: Plans and reflections and Distrust and delay. Approaching the end of life includes three subcategories: Practical issues, Worries and realism, and Keeping it away.

Conclusion: This study highlights the diverse ways older people perceive future and the end of life. The results make it possible to further understand the complex phenomenon of frail older persons’ perceptions on the future and the end of life.

Introduction: Despite evidence that older persons want to be involved in care, little is known about how older people with complex health problems living at home experience participation in care provided by different stakeholders. This study investigates the experiences of participation in care by older people, following their involvement in a proactive intervention based on a new health care model called Focused Primary Care. Material and methods: Individual semi-structured interviews were conducted with 20 older persons in five municipalities in Sweden. All the interviewees had participated in the intervention. Results: The older persons highlighted opportunities and limitations for participation on a personal level i.e. conditions for being involved in direct care and in relation to independence. Experiences of participation on an organisational level were reported to a lesser degree. In order to keep care contacts together and improve participation, a coordinating person (called “the spider in the net”) was requested who could safeguard the staff’s relationship with the older person. Conclusions: Primary care should to a greater extent involve older persons more directly in the planning and execution of care. There is considerable potential for developing the health and primary care sector to better target the needs of older persons with complex health problems, and to enhance their participation and independence. Interventions, like the one followed in this project, can play a critical role in realising the needs of older persons, where providing participation in care is recognised as a significant goal to assist them in navigating the care system. 

Purpose: Despite evidence that older persons want to be involved in care, little is known about how frail older people with significant care needs living at home experience participation in care provided by different stakeholders. This study investigates the experiences of participation in care by older people following their involvement in an intervention of a health care model called Focused Primary care (FPC).'Methods: Individual semi-structured interviews were conducted with 20 older persons in five municipalities in Sweden.Results: The results show that older persons highlighted opportunities and limitations for participation on a personal level i.e., conditions for being involved in direct care and in relation to independence. Experiences of participation on organizational levels were reported to a lesser degree. This included being able to understand the organizational system underpinning care. The relational dimensions of caregiving were emphasized by the older persons as the most central aspects of caregiving in relation to participation .Conclusions: Primary care should involve older persons more directly in planning and execution of care on all levels. An ongoing connection with one specialized elderly team and a coordinating person in Primary care who safeguards relationships is important fo rproviding participation in care for frail older persons with significant care needs living at home.

Background: Sexual health needs are insufficiently met for persons living with rheumatological diseases and it is necessary to create better ways to meet these needs.Objective: To co-create a working model to improve sexual health for persons living with rheumatological diseases, that can be used by rheumatological teams in regular rheumatology practice.Design: This study applied a co-creation design with three key features: 1) it took a systems perspective with emergent multiple interactive entities; 2) the research process was viewed as a creative endeavour with strong links to design, while human imagination and the individual experience of patient and staff were at the core of the creative design effort; 3) the process of the co-creative efforts was as important as the generated product.Results: A model defining the role of the patient, the professionals, and the team in optimizing sexual health for persons living with rheumatological diseases was co-created. The model can be seen as a practice guideline, which includes the support needed from and to each participant in the process of promoting sexual health, while being within the professional scope of the professionals’ knowledge and capacity, and in line with the needs of the persons living with rheumatological diseases.Discussion and Conclusions: The co-creative work process identified crucial factors in promoting sexual health, resulting in a useful model for patients, professionals and teams. Co-creation was experienced to be a useful research design to improve rheumatological care, through valuing and using the competence of all research members equally.

Background:Despite a growing body of knowledge about eHealth innovations, there is still limited understanding of the implementation of such tools in everyday primary care.

Objective:The objective of our study was to describe health care staff’s experience with a digital communication system intended for patient-staff encounters via a digital route in primary care.

Methods:In this qualitative study we conducted 21 individual interviews with staff at 5 primary care centers in Sweden that had used a digital communication system for 6 months. The interviews were guided by narrative queries, transcribed verbatim, and subjected to content analysis.

Results:While the digital communication system was easy to grasp, it was nevertheless complex to use, affecting both staffing and routines for communicating with patients, and documenting contacts. Templates strengthened equivalent procedures for patients but dictated a certain level of health and digital literacy for accuracy. Although patients expected a chat to be synchronous, asynchronous communication was extended over time. The system for digital communication benefited assessments and enabled more efficient use of resources, such as staff. On the other hand, telephone contact was faster and better for certain purposes, especially when the patient’s voice itself provided data. However, many primary care patients, particularly younger ones, expected digital routes for contact. To match preferences for communicating to a place and time that suited patients was significant; staff were willing to accept some nuisance from a suboptimal service—at least for a while—if it procured patient satisfaction. A team effort, including engaged managers, scaffolded the implementation process, whereas being subjected to a trial without likely success erected barriers.

Conclusions:A digital communication system introduced in regular primary care involved complexity beyond merely learning how to manage the tool. Rather, it affected routines and required that both the team and the context were addressed. Further knowledge is needed about what factors facilitate implementation, and how. This study suggested including ethical perspectives on eHealth tools, providing an important but novel aspect of implementation.

Purpose: The aim of was to identify and illustrate in what situations and with what qualities people with early RA experience participation in every day’s life.

Methods: 59 patients (age 18-63 years) were interviewed; 25 men and 34 women. Content analysis was used to identify meaning units which were sorted based on type of situations described and later on, categories based on quality aspects of participation were developed.

Results: Participation was described as: 1. being part of a group, where a sense of belonging arose. 2. In doing activities with others for example at work or in leisure. 3. When sharing everyday chores and responsibilities for example in domestic duties. 4. When experiencing influence on actions such as when being asked for opinions on how to conduct a specific task. 5. When having the possibility to give direction of goals in rehabilitation, or elsewhere. 6. When sharing decision making and experiencing a high degree of influence in the situation.

Conclusions: Participation from an individual’s perspective is about belonging and having influence that mediates a positive feeling of being included and that you matter as a person. The results are important when using participation as a goal in clinical care. It’s important to expand participation beyond the definitions in ICF and guidelines to include the patients’ socio-emotional participation in order to promote health.