Thanks for hearing me: key elements of primary care according to older patients.

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).

In this qualitative interview study, the three categories Care characterised by easy access, continuity and engaged staff builds security; Everyday life and Plans in late life with underlying sub-categories describe the older patients' views on what is important in their current care and possible future interventions in a Swedish primary care setting.The latent theme 'Person-centred care with easy access, continuity and engaged staff' was formed to give a deeper meaning to the content of the categories and sub-categories.Having a permanent care contact with a responsible nurse in an elder care team and a personal doctor (most often a general practitioner) over time seems important for vulnerable older patients with high risk of hospitalisation.The study suggests qualitative individual interviews as an approach to increase older peoples' participation in future clinical complex study designs.

'But there are so many referrals which are totally only generating work and irritation': a qualitative study of physicians' and nurses' experiences of work tasks in primary care in Sweden.

OBJECTIVE: This study explored the perceptions of physicians and nurses in Swedish primary care regarding the legitimacy of their work tasks and the use of their professional competence. DESIGN AND SETTING: This qualitative study was based on manifest content analysis. Data were collected with individual semi-structured interviews of physicians and nurses at publicly managed primary care centres in the Region Östergötland, Sweden. To include both large and small primary care centres, we applied strategic sampling. Among 15 primary care centres invited, nine agreed to participate, including four urban, two suburban, and three rural centres. SUBJECTS: The study included 11 physicians and 13 nurses from nine primary care centres. MAIN OUTCOME MEASURES AND RESULTS: The physicians and nurses perceived several of their work tasks as illegitimate. In addition, they experienced work-related difficulties, due to resource shortages, challenging electronic data systems, work inefficiencies, and that there were insufficient cooperation with, and problems drawing the line between, primary care and hospital care responsibilities. However, most found that their individual expertise was appropriately used, overall. CONCLUSIONS: Strained work situations and illegitimate work tasks may inflate discontentment and lead to negative work stress. Nevertheless, the staff felt that competence was used appropriately in the tasks considered legitimate.Key PointsPhysicians and nurses in primary care in Sweden described several work tasks as illegitimate.Physicians and nurses described problems with heavy workloads, resource shortages, electronic data-system challenges, inefficiencies and with cooperation and drawing the line between primary care and hospital care.Overall, physicians and nurses believed their individual expertise was used appropriately.To uphold sustainable working conditions and thoughtful use of staff competence, organisational measures, such as redistributing staff from hospital to primary care were proposed.

'Do you have a future when you are 93?' Frail older person's perceptions about the future and end of life - a qualitative interview study in primary care.

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.KEY POINTSThe study found that older persons described their future as contradictory- with a broad spectrum of approaches, where some wanted to deal with these subjects and others wanted to ignore them.•Older persons that consciously planned for the future had tactics that often were related to goals that functioned as motivators to live longer.•Those who adopted a more passive approach did not think about what the future might hold in terms of losing autonomy and deteriorating health.•Older persons that approached end of life in a more proactive way wanted to plan practical arrangements around death but often found it hard to address this issue with relatives.•Those older persons that had a more passive approach to end of life preferred not to think about those issues, and some explicitly stated that they did not want to address the final period of life.

A Human, Organization, and Technology Perspective on Patients' Experiences of a Chat-Based and Automated Medical History-Taking Service in Primary Health Care: Interview Study Among Primary Care Patients.

BACKGROUND: The use of e-visits in health care is progressing rapidly worldwide. To date, studies on the advantages and disadvantages of e-consultations in the form of chat services for all inquiries in primary care have focused on the perspective of health care professionals (HCPs) rather than those of end users (patients). OBJECTIVE: This study aims to explore patients' experiences using a chat-based and automated medical history-taking service in regular, tax-based, not-for-profit primary care in Sweden. METHODS: Overall, 25 individual interviews were conducted with patients in the catchment areas of 5 primary care centers (PCCs) in Sweden that tested a chat-based and automated medical history-taking service for all types of patient inquiries. The semistructured interviews were transcribed verbatim before content analysis using inductive and deductive strategies, the latter including an unconstrained matrix of human, organization, and technology perspectives. RESULTS: The service provided an easily managed way for patients to make written contact with HCPs, which was considered beneficial for some patients and issues but less suitable for others (acute or more complex cases). The automated medical history-taking service was perceived as having potential but still derived from what HCPs need to know and how they address and communicate health and health care issues. Technical skills were not considered as necessary for a mobile phone chat as for handling a computer; however, patients still expressed concern for people with less digital literacy. The opportunity to take one's time and reflect on one's situation before answering questions from the HCPs was found to reduce stress and prevent errors, and patients speculated that it might be the same for the HCPs on the other end of the system. Patients appreciated the ability to have a conversation from almost anywhere, even from places not suitable for telephone calls. The asynchronicity of the chat service allowed the patients to take more control of the conversation and initiate a chat at any time at their own convenience; however, it could also lead to lengthy conversations where a single issue in the worst cases could take days to close. The opportunity to upload photographs made some visits to the PCC redundant, which would otherwise have been necessary if the ordinary telephone service had been used, saving patients both time and money. CONCLUSIONS: Patients generally had a positive attitude toward e-visits in primary care and were generally pleased with the prospects of the digital tool tested, somewhat more with the actual chat than with the automated history-taking system preceding the chat. Although patients expect their PCC to offer a range of different means of communication, the human, organization, and technology analysis revealed a need for more extensive (end) user experience design in the further development of the chat service.

A dyadic exploration of support in everyday life of persons with RA and their significant others.

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.

Trustful conversations: a qualitative interview study on older patients' experiences of the intervention Proactive healthcare in a Swedish primary care setting.

AIM: To explore older patients' experiences of the intervention Proactive healthcare for frail elderly persons. BACKGROUND: Previous research has indicated that continuity and good access to primary care can improve satisfaction in older people seeking care. However, little is known about the older patients' experiences in taking part of interventions aiming to enhance the care. METHODS: Individual interviews were conducted with 24 older patients who participated in the intervention Proactive healthcare for frail elderly persons, selected from nine Swedish primary care centres. Interviews were analysed using qualitative content analysis. FINDINGS: Older patients' experiences of the intervention involved five manifest categories: Ways of naming the elder care team, covering the older patients' lack of understanding regarding their connection to the team, and the need for clarity on this and on how the specialised care provided differed from conventional care; Availability, indicating how older patients associated easy access and a direct telephone number with a team nurse available at certain times with a sense of security; The importance of relations, covering how patients appreciated continuity in their personal and professional conversations with staff; A feeling of safety and trust, stressing the value of older persons attach to being given enough time, to be listened to and being recognised as people; and Finiteness of life, which refers to the difficulty of having end-of-life conversations and the need for experienced staff with personal knowledge of the patients. The latent theme Trustful conversations was created to give a deeper meaning to the content of the categories.Trustful conversations, created through good personal knowledge of patients and continuity of contact, engender a feeling of safety in older patients. Using elder care teams could result in a better quality of care, with increased satisfaction and feelings of security among patients, and a reduction in healthcare needs.

Inflammatory Arthritis and the Effect of Physical Activity on Quality of Life and Self-Reported Function: A Systematic Review and Meta-Analysis.

OBJECTIVE: Although physical activity is an evidence-based intervention that reduces disease-related symptoms and comorbidity in rheumatoid arthritis (RA), the effect of physical activity on self-reported function and quality of life (QoL) has not yet been analyzed. The present study synthesizes the evidence for the effectiveness of physical activity on QoL and self-reported function in adults with RA, spondyloarthritis (SpA), and psoriatic arthritis (PsA). METHODS: The databases PubMed, Embase, CINAHL, and Cochrane Central Register of Controlled Trials (CENTRAL) were searched to identify relevant randomized controlled trials (RCTs). Screening, risk of bias assessment (using the RoB 2.0 tool), and data extraction were independently performed by 2 or more of the authors. Meta-analyses were conducted with a random-effects model. RESULTS: Systematic review included 55 RCTs, and meta-analysis included 37 RCTs. Of the 55 studies included, 76%, 20%, and 4% were designed to investigate RA, SpA, and PsA, respectively. In the RA studies, effects of physical activity on QoL and function were found compared to the group of inactive controls; no effects were found compared to the group of active controls. In the SpA studies, the effects of physical activity on QoL were in favor of the control group. Effects of physical activity on function were found compared to the group of inactive controls and sustained in fatigue and pain when compared to the group of active controls. In the PsA studies, no effects on QoL were found, but effects on function were noted when compared to the group of inactive controls. The effect size was below 0.30 in the majority of the comparisons. CONCLUSION: Physical activity may improve QoL and self-reported function in individuals with RA, SpA, and PsA. However, larger trials are needed, especially in SpA and PsA.

Maneuvering the care puzzle: Experiences of participation in care by frail older persons with significant care needs living at home.

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 for providing participation in care for frail older persons with significant care needs living at home.

Health Care Professionals' Experience of a Digital Tool for Patient Exchange, Anamnesis, and Triage in Primary Care: Qualitative Study.

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.

Time to update the ICF by including socioemotional qualities of participation? The development of a "patient ladder of participation" based on interview data of people with early rheumatoid arthritis (the Swedish TIRA study).

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: Fifty-nine patients (age 18-63 years) were interviewed; 25 men and 34 women. Content analysis was used to identify meaning units that were sorted based on the 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 is important to expand participation beyond the definitions in ICF and guidelines to include the patients' socio-emotional participation in order to promote health.Implications for rehabilitationFacilitation of participation in daily activities is an important part of rehabilitation.Participation is expressed as determined by a person's unique life circumstances often in engagement with others.It is important to expand participation beyond the definitions in ICF and guidelines to include the patients' socio-emotional participation in order to promote health.Collected information about socioemotional participation can serve as a starting point for interventions aimed at the patient's social environment and also provide support for health professions how to involve significant others in the rehabilitation.

Significant others' influence on participation in everyday life - the perspectives of persons with early diagnosed rheumatoid arthritis.

Purpose: To describe the meaning of significant others in relation to participation in everyday life of persons with early diagnosed rheumatoid arthritis (RA).Materials and methods: Fifty-nine persons participated in this interview study. Inclusion criteria were three years' experience of diagnosis and being of working age. Semi-structured interviews were conducted using critical incident technique (CIT), and the material was analysed using content analysis.Results: Four categories were revealed: (1) My early RA causes activity adaptations for us all, referring to the person and significant others modifying activities. (2) Making the significant others balance between shortfalls and participation, where the participants distinguished between needing help and feeling involved in activities. (3) Physical interactions with significant others, referring to both the problematic and manageable impact RA could have on body contact. (4) Emotions in relation to activities with others, where participants described feelings of failing others, and anxiety about future activities.Conclusions: For persons with early diagnosed RA, significant others can be both hindering and facilitating for participation in everyday life. As a clinical implication, it is valuable to identify how significant others can be involved in the rehabilitation process, to enhance participation in everyday life early in the disease process.Implications for rehabilitationSignificant others of persons with rheumatoid arthritis can facilitate as well as hinder participation in everyday life, even early in the disease process.It is important to include the significant others in the rehabilitation process of persons with early diagnosed rheumatoid arthritis.It is of great importance to identify when and how significant others can be facilitators of participation in everyday life for persons with early rheumatoid arthritis.To make it easier for significant others to facilitate participation, there is a need for the healthcare system to explore ways to support significant others with easily accessible information about early rheumatoid arthritis.

'I lose all these hours...'--exploring gender and consequences of dilemmas experienced in everyday life with coeliac disease.

Few studies have focused on gendered consequences of coeliac disease (CD), despite the fact that women with coeliac disease report lower health-related quality of life than men do. The aim of this study was to explore consequences of dilemmas in everyday lives for women and men, as personally affected by CD or as close relatives to someone affected by the disease and to put these experiences into context regarding household activities. This QUAL-quan study included 28 men and 38 women. A mix method design was used. The critical incident technique that captures, in a structured way, the qualities of experiences was used in interviews to identify dilemmas and their consequences. To describe the social context of these dilemmas, a quantitative questionnaire was developed on food preparations and purchase, as well as on cooking and meal behaviours. The study was approved by the Research Ethics Committee of the Faculty of Health Sciences. The consequences were found in cognitive, social, emotional and physical aspects of human life. The overall pattern of these consequences was similar in women and men irrespective of being personally affected or a close relative. The main consequences identified were: daily concerns about gluten, constant preparation, being different, emotional pressure and body sensations because of CD. Descriptive data extracted from the questionnaire showed that women and men reported having a different social situation in relation to preparing food, making decisions about purchases, buying food products and preparing meals. The clinical implications of these findings are that healthcare professionals need to develop family-oriented information in relation to CD. It is necessary to inform the close relatives irrespective of sex of the possible consequences of the disease and to take in to account the different social context that women and men report in relation to food preparations.

Proactive healthcare for frail elderly persons: study protocol for a prospective controlled primary care intervention in Sweden.

INTRODUCTION: The provision of healthcare services is not dedicated to promoting maintenance of function and does not target frail older persons at high risk of the main causes of morbidity and mortality. The aim of this study is to evaluate the effects of a proactive medical and social intervention in comparison with conventional care on a group of persons aged 75 and older selected by statistical prediction. METHODS AND ANALYSIS: In a pragmatic multicentre primary care setting (n=1600), a prediction model to find elderly (75+) persons at high risk of complex medical care or hospitalisation is used, followed by proactive medical and social care, in comparison with usual care. The study started in April 2017 with a run-in period until December 2017, followed by a 2-year continued intervention phase that will continue until the end of December 2019. The intervention includes several tools (multiprofessional team for rehabilitation, social support, medical care home visits and telephone support). Primary outcome measures are healthcare cost, number of hospital care episodes, hospital care days and mortality. Secondary outcome measures are number of outpatient visits, cost of social care and informal care, number of prescribed drugs, health-related quality of life, cost-effectiveness, sense of security, functional status and ability. We also study the care of elderly persons in a broader sense, by covering the perspectives of the patients, the professional staff and the management, and on a political level, by using semistructured interviews, qualitative methods and a questionnaire. ETHICS AND DISSEMINATION: Approved by the regional ethical review board in Linköping (Dnr 2016/347-31). The results will be presented in scientific journals and scientific meetings during 2019-2022 and are planned to be used for the development of future care models. TRIAL REGISTRATION NUMBER: NCT03180606.

Foot Barriers in Patients With Early Rheumatoid Arthritis: An Interview Study Among Swedish Women and Men.

OBJECTIVE: Foot impairments are related to reduced mobility and participation restrictions in daily activities in patients with established rheumatoid arthritis (RA). The new biologic medications are effective and reduce disease activity, but not disability to the same extent. Foot impairments are assumed to be related to participation restrictions also in patients with early RA, diagnosed after the introduction of biologic medications. Knowledge of foot impairments needs to be explored further after the introduction of biologic disease-modifying antirheumatic drugs (bDMARDs). The aim of this study was to explore the patients' perspective of foot impairments related to early RA. METHODS: The sample included 59 patients (ages 20-63 years) who were interviewed about participation dilemmas in daily life using the critical incident technique. The interviews were audio-recorded and transcribed. Data related to foot impairments were extracted and analyzed thematically. A research partner validated the analysis. RESULTS: Patients with early RA described a variety of participation restrictions related to foot impairments: foot hindrances in domestic life, foot impairments influencing work, leisure activities restricted by one's feet, struggling to be mobile, and foot impairments as an early sign of rheumatic disease. CONCLUSION: There is a need to focus on foot impairments related to early RA, and for health care professionals to understand these signs. A suggestion for future research is to conduct a longitudinal followup of foot impairment related to medication, disease activity, and disability in patients diagnosed after the introduction of bDMARDs.

Women's situation-specific strategies in managing participation restrictions due to early rheumatoid arthritis: A gender comparison.

INTRODUCTION: The present study explored how women describe their use of situation-specific strategies when managing rheumatoid arthritis (RA). The aim was also to compare women's strategies with those of men, and see the extent to which they used the same strategies. METHODS: The data were collected using semi-structured interviews based on the critical incident technique. The sample consisted of women with early rheumatic arthritis (n = 34), and the results were compared with data reported in a previous study on men (n = 25) from the same cohort. The patient-described participation restrictions due to RA were firstly linked to the domains of the International Classification of Functioning, Disability and Health (ICF). The different strategies used were then categorized. The study was approved by the Research Ethics Committee of the Faculty of Health Sciences, Linköping University, Sweden. RESULTS: The study found that women used four situation-specific strategies: adjustment, avoidance, interaction and acceptance. The same strategies had been found previously in interviews with men with RA. Women and men used these strategies to a similar extent in the ICF domains of mobility; major life arenas; domestic life; interpersonal interactions and relationships; and community, social and civic life. However, some differences were found, relating to the reported activities in self-care and domestic life, in which women reported using strategies to a greater extent than men. CONCLUSIONS: Women and men used four types of situation-specific strategies in managing RA; adjustment, avoidance, interaction and acceptance. These situation-specific strategies provide useful knowledge, in terms of multidisciplinary rehabilitation and for patients' significant others.

Lived Experiences of Sex Life Difficulties in Men and Women with Early RA - The Swedish TIRA Project.

BACKGROUND: Men and women with rheumatoid arthritis (RA) experience restrictions in everyday life, in spite of the development of new medications. Recent research has described in detail how participation limitations are experienced in everyday life from a patient perspective. However, knowledge of how sex and intimate relationships are affected is still scarce. OBJECTIVES: The aim of the present study was to explore sex life experiences in relation to sexual function and sexual relationships in men and women with early RA. METHODS: The study formed part of TIRA-2 (the Swedish acronym for the prospective multicentre early arthritis project). The data collection included 45 interviews with 21 men and 24 women, aged 20-63, which were recorded and transcribed verbatim. The critical incident technique was used to collect data, and content analysis to categorize the results. RESULTS: Half the participants stated that RA affected their sex life. The general descriptions formed five categories: sex life and tiredness; sex life and ageing; emotional consequences of impaired sexual function; facilitators of sexual function and sexual relationships; and strain on the sexual relationship. CONCLUSIONS: Sex life is affected in early RA, in spite of new effective treatment strategies. New strategies of communication, assessment and self-managing interventions concerning the sex lives of patients with RA need to be implemented by a multidisciplinary healthcare team. Copyright © 2015 John Wiley & Sons, Ltd.

Dilemmas of participation in everyday life in early rheumatoid arthritis: a qualitative interview study (The Swedish TIRA Project).

PURPOSE: To explore the experiences of today's patients with early rheumatoid arthritis (RA) with respect to dilemmas of everyday life, especially regarding patterns of participation restrictions in valued life activities. METHODS: A total of 48 patients, aged 20-63, three years post-RA diagnosis were interviewed using the Critical Incident Technique. Transcribed interviews were condensed into meaningful units describing actions/situations. These descriptions were linked to ICF participation codes according to the International Classification of Functioning, Disability and Health (ICF) linking rules. RESULTS: Dilemmas in everyday life were experienced in domestic life, interpersonal interactions and relationships, community, social and civic life. Most dilemmas were experienced in domestic life, including participation restrictions in, e.g. gardening, repairing houses, shovelling snow, watering pot plants, sewing or walking the dog. Also many dilemmas were experienced related to recreation and leisure within the domain community, social and civic life. The different dilemmas were often related to each other. For instance, dilemmas related to community life were combined with dilemmas within mobility, such as lifting and carrying objects. CONCLUSIONS: Participation restrictions in today's RA patients are complex. Our results underline that the health care needs to be aware of the patients' own preferences and goals to support the early multi-professional interventions in clinical practice. Implications of Rehabilitation Today's rheumatoid arthritis (RA) patients experience participation restrictions in activities not included in International Classification of Functioning, Disability and Health (ICF) core set for RA or in traditionally questionnaires with predefined activities. The health care need to be aware of the patients' own preferences and goals to meet the individual needs and optimize the rehabilitation in early RA in clinical practice.

Participation in work in early rheumatoid arthritis: a qualitative interview study interpreted in terms of the ICF.

PURPOSE: To explore what work-related dilemmas are experienced by patients with early rheumatoid arthritis (RA), according to their own descriptions, and to interpret this in terms of participation categories of the International Classification of Functioning, Disability and Health (ICF). METHOD: In 48 patients with early RA, qualitative interviews were analyzed, followed by linking of concepts to the activity/participation component of the ICF and interpretation of general themes. RESULTS: Work-related dilemmas represented different societal perspectives on work related to acquiring, keeping and terminating a job, self-employment, part-time, full-time and non-remunerative employment. Dilemmas also represented participation priorities in economic self-sufficiency, self-care such as health care, and avoiding social relationships and recreation in favor of work. Leisure time was influenced because efforts of working took energy and time of day-to-day procedures. Embedded actions in work-related dilemmas were carrying out daily routine, mobility including using transportation, self-care, domestic life and social interaction. CONCLUSION: The general themes societal perspectives, participation priorities and embedded actions, with the included ICF categories that are described in detail according to the experiences of the patients, can support clinical reasoning and research on quantitative relations to disease activity, body functions, ability and contextual factors.

Emotions related to participation restrictions as experienced by patients with early rheumatoid arthritis: a qualitative interview study (the Swedish TIRA project).

Psychological distress is a well-known complication in rheumatoid arthritis (RA), but knowledge regarding emotions and their relationship to participation restrictions is scarce. The objective of the study was to explore emotions related to participation restrictions by patients with early RA. In this study, 48 patients with early RA, aged 20-63 years, were interviewed about participation restrictions using the critical incident technique. Information from transcribed interviews was converted into dilemmas and linked to International Classification of Functioning, Disability, and Health (ICF) participation codes. The emotions described were condensed and categorized. Hopelessness and sadness were described when trying to perform daily activities such as getting up in the mornings and getting dressed, or not being able to perform duties at work. Sadness was experienced in relation to not being able to continue leisure activities or care for children. Examples of fear descriptions were found in relation to deteriorating health and fumble fear, which made the individual withdraw from activities as a result of mistrusting the body. Anger and irritation were described in relation to domestic and employed work but also in social relations where the individual felt unable to continue valued activities. Shame or embarrassment was described when participation restrictions became visible in public. Feelings of grief, aggressiveness, fear, and shame are emotions closely related to participation restrictions in everyday life in early RA. Emotions related to disability need to be addressed both in clinical settings in order to optimize rehabilitative multi-professional interventions and in research to achieve further knowledge.

Experienced dilemmas of everyday life in chronic neuropathic pain patients--results from a critical incident study.

Neuropathic pain is a disabling chronic condition with limited therapeutic options. Few studies have addressed patient's experience and strategies. The aim of this study was to explore dilemmas experienced in order to improve care and rehabilitation. An interview study with 39 patients suffering from neuropathic pain of different origin was performed. We used the critical incident technique to collect data. Questions on occasions when patients had been hindered by or reminded of their neuropathic pain were included, and the self-perceived consequences and management of such occasions. The interviews were transcribed verbatim and analysed qualitatively. A broad range of experiences categorised into dilemmas, disturbances, consequences and managements from most parts of everyday life was identified. The dilemmas were 'housework', 'sitting', 'physical activity', 'personal hygiene', 'sleeping difficulties', 'hypersensitivity to external stimuli', 'social relationships', 'transportation' and 'leisure time'. Disturbances were 'failures', 'inabilities' and 'restrictions'. Consequences were 'increased pain', 'psychological reactions' and 'physical symptoms'. The majority of the patients used activity-oriented strategies to manage their pain such as alternative ways of performing the task, a cognitive approach or simply ignoring the pain. This is one of the first studies presenting detailed data on everyday dilemmas, disturbances and consequences of patients with chronic neuropathic pain. Such information is important in clinical settings to improve care and rehabilitation.