Being a patient in the intensive care unit: a narrative approach to understanding patients' experiences of being awake and on mechanical ventilation.

PURPOSE: Intensive care patients often struggle to communicate due to the technical equipment used for mechanical ventilation and their critical illness. The aim of the study was to achieve a deeper understanding of how mechanically ventilated intensive care patients construct meaning in the unpredictable trajectory of critical illness. METHODS: The study was a part of a larger study in which ten patients were video recorded while being in the intensive care. Five patients engaged in interviews about their experiences from the intensive care stay after being discharged and were offered the possibility to see themselves in the video recordings. A narrative, thematic analysis was applied to categorize the patients' experiences from the intensive care. RESULTS: A pattern of shared experiences among intensive care patients were identified. Three main themes capture the patient's experiences: 1) perceiving the intensive care stay as a life-changing turning point, 2) being dependent on and cared for by others, and 3) living with negative and positive ICU experiences. CONCLUSION: The patients' narratives revealed how being critically ill affected them, and how they understood their experiences in relation to themselves and their surroundings. The results can be used to pose important questions about our current clinical practice.

Non-invasive ventilation in the care of patients with chronic obstructive pulmonary disease with palliative care needs: a scoping review.

BACKGROUND: Patients with severe chronic obstructive pulmonary disease (COPD) could have palliative care (PC) needs because of unmet needs such as dyspnoea. This may lead to anxiety and may have an impact on patients' ability to perform daily activities of living. PC can be started when patients with COPD have unmet needs and can be provided alongside disease-modifying therapies. Non-invasive ventilation (NIV) could be an important measure to manage dyspnoea in patients with COPD in need of PC. A scoping review was conducted to gain an overview of the existing research and to identify knowledge gaps. The aim of this scoping review was to systematically map published studies on the use of NIV in patients with COPD with PC needs, including the perspectives and experiences of patients, families, and healthcare professionals (HCPs). METHODS: This review was conducted following the framework of Arksey and O'Malley. The reporting of the review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The review protocol was published. AMED, CINAHL, Embase, MEDLINE, PEDro, and PsycInfo were searched from inception to November 14, 2022. The included studies had to report the perspectives and experiences of COPD patients, relatives, and HCPs regarding NIV in the care of patients with COPD with PC needs. In pairs, the authors independently assessed studies' eligibility and extracted data. The data were organised thematically. The results were discussed in a consultation exercise. RESULTS: This review included 33 papers from 32 studies. Four thematic groupings were identified: preferences and attitudes towards the use of NIV; patient participation in the decision-making process of NIV treatment; conflicting results on the perceived benefits and burdens of treatment; and heterogenous clinical outcomes in experimental studies. Patients perceived NIV as a 'life buoy' to keep them alive. Many patients wanted to take part in the decision-making process regarding NIV treatment but expressed varying degrees of inclusion by HCPs in such decision-making. Conflicting findings were identified regarding the perceived benefits and burdens of NIV treatment. Diversity in heterogeneous clinical outcomes were reported in experimental studies. CONCLUSIONS: There is a need for more studies designed to investigate the effectiveness of NIV as a palliative measure for patients with COPD with PC needs using comprehensive outcomes. It is especially important to gain more knowledge on the experiences of all stakeholders in the use of home-based NIV treatment to these patients.

Implementation of remote home care: assessment guided by the RE-AIM framework.

BACKGROUND: Welfare technology interventions have become increasingly important in home-based palliative care for facilitating safe, time-efficient, and cost-effective methods to support patients living independently. However, studies evaluating the implementation of welfare technology innovations are scarce, and the empirical evidence for sustainable models using technology in home-based palliative care remains low. This study aimed to report on the use of the Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) framework to assess the implementation of remote home care (RHC) a technology-mediated service for home-living patients in the palliative phase of cancer. Furthermore, it aimed to explore areas of particular importance determining the sustainability of technologies for remote palliative home-based care. METHODS: A secondary analysis of data collected by semi-structured interviews with patients with cancer in the palliative phase, focus groups, and semi-structured interviews with healthcare professionals (HCPs) experienced with RHC was performed. A deductive reflexive thematic analysis using RE-AIM dimensions was conducted. RESULTS: Five themes illustrating the five RE-AIM dimensions were identified: (1) Reach: protective actions in recruitment - gatekeeping, (2) Effectiveness: potential to offer person-centered care, (3) Adoption: balancing high touch with high tech, (4) Implementation: moving towards a common understanding, and (5) Maintenance: adjusting to what really matters. The RE-AIM framework highlighted that RHC implementation for patients in the palliative phase of cancer was influenced by HCP gatekeeping behavior, concerns regarding abandoning palliative care as a high-touch specialty, and a lack of competence in palliative care. Although RHC facilitated improved routines in patients' daily lives, it was perceived as a static service unable to keep pace with disease progression. CONCLUSIONS: A person-centered approach that prioritizes individual needs and preferences is necessary for providing optimal care. Although technologies such as RHC are not a panacea, they can be integrated as support for increasingly strained health services.

Patients' and Nurses' experiences of caring in nursing: An integrative literature review across clinical practices.

AIM: To summarise, interpret and synthesize research findings on patients' and nurses' experiences of caring in nursing across clinical practices. BACKGROUND: Caring is a universal element of nursing; however, economic restrictions often negatively impact health services, and time shortages and limited numbers of staff may characterize care encounters. It is unclear how these contextual conditions affect patients' and nurses' experiences of caring. DESIGN AND METHODS: This integrative literature review covers papers published between 2000 and 2022. Four databases-PubMed, PsycINFO (via Ovid), MEDLINE (via Ovid) and CINAHL (via EBSCO)-were systematically searched for eligible papers in May 2022. The included studies were critically appraised. Content analysis was performed to interpret and synthesize the findings. In accordance with the EQUATOR guidelines, the PRISMA 2020 and PRISMA-S checklists were used. An Integrative review methodology guided the process. FINDINGS: In total, 33 studies were included in the review. Three themes captured the experiences of caring in nursing: (1) the complexity of the nursing care context, (2) the professionalism of the nurse, and (3) the trusting patient-nurse relationship. CONCLUSION: The experience of caring in nursing depended on nurses' competence and discretion in the personal encounter framed by the nursing context. The caring relationship was based on reciprocity, but it remains asymmetrical, as the nurse had the power and responsibility to empower the patient. Barriers, such as increased demands for efficiency and resource scarcity, may hinder the experience of caring in nursing. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: By promoting an ongoing discussion of caring in nursing, nurse management can systematically support nurses in reflecting on their practice in diverse and complex clinical contexts. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution was made due to the study design.

Empowerment interventions designed for persons living with chronic disease - a systematic review and meta-analysis of the components and efficacy of format on patient-reported outcomes.

BACKGROUND: Empowerment approaches are essential for building the capacity of individuals with chronic disease to be in control of their health. Reviews of empowerment interventions have been focused on specific chronic diseases, thereby limiting the scope of findings. This study had three aims: 1) to describe the characteristics of empowerment interventions covering a broad range of chronic diseases, 2) to clarify consistency with the World Health Organization`s (WHO) definition of empowerment as a process composed of four fundamental components and 3) to summarize outcome measures and estimate the effects in group and individual intervention formats. METHODS: Systematic literature review and meta-analysis. CINAHL, Medline, Embase, PsycINFO, Web of Science, COCHRANE and Central Register of Controlled Trials were searched using Chronic Disease, NCD, Empowerment, as MeSH terms. Eligible randomized and quasi randomized controlled trials were included. Review Manager 5.4 was used to conduct the meta-analysis. Risk of bias was assessed with the Cochrane risk-of-bias tool (ROB 2). RESULTS: Thirty-nine articles representing 8,011 participants were included in the review. A majority (82%) of studies reported robust evidence for changes on study-defined outcome measures in favor of interventions. Intervention content was assessed against WHO's four fundamental components of empowerment, showing that all studies incorporated one component, but none targeted all components. Components reflecting knowledge acquisition, patient engagement with their health care providers and facilitating environment were scarcely reported. Meta-analyses found evidence for positive effects of group-format interventions measuring empowerment, HbA1c, and self-efficacy. Effects on empowerment were also found in some individual-format interventions. High levels of heterogeneity and variability among the conceptual frameworks were identified. CONCLUSION: Empowerment interventions in group-format were most efficient, however, considerable conceptual inconsistencies were identified. Future studies should consolidate conceptual understandings by using WHO's empowerment framework to ensure that fundamental components of empowerment are explicitly included in intervention design. Furthermore, there is a need to clarify the role of empowerment through pathways that include patient activation, self- management, and clinical outcomes. This systematic review will inform the clinicians and researchers who aim to develop novel empowerment interventions to assist patients in the process of gaining control of their health. TRIAL REGISTRATION: PROSPERO: International Prospective register of systematic reviews ID=CRD42020178286.

Health Care Professionals' Experiences of Facilitating Patient Activation and Empowerment in Chronic Illness using a Person-Centered and Strengths-Based Self-Management Program.

OBJECTIVE: Patients with chronic illness who are empowered and activated are more likely to engage in self-management in order to stabilise their condition and enhance their quality of life. This study aimed to explore Health Care Professional's (HCP) assessment of a person-centered intervention called 'The Bodyknowledging Program' (BKP) for the facilitation of empowerment and patient activation in the context of chronic illness. METHODS: This study employed a qualitative process evaluation after programme completion. Data was collected through focus-groups and individual interviews with HCPs and content analysis was used in the analysis. RESULTS: Four themes were identified: 1) Shifts towards the patient-perspective, 2) The value of a patient-centered conceptual framework, 3) Patient activation through dialogue based support and 4) Challenging competencies. Discussion: This study introduces 'The Bodyknowledging Program' as a useful tool to uncover patients' needs and to activate and empower them to take more responsibility for their health through self-care management. The usability of the new intervention depends on HCP's ability to develop their counselling skills and changing their approach towards utilising patients' individual resources in the promotion of their health.

Patients' experiences with a welfare technology application for remote home care: A longitudinal study.

AIMS AND OBJECTIVES: To explore the longitudinal experiences using an application named remote home care for remote palliative care among patients with cancer living at home. BACKGROUND: Introducing welfare technology in home-based care for patients with cancer in the palliative phase is internationally suggested as a measure to remotely support palliative care needs. However, little is known about the experiences of patients utilising welfare technology applications to receive home-based care from healthcare professionals in a community care context. Although living with cancer in the palliative phase often presents rapidly changing ailments, emotions and challenges with patients' needs changing accordingly, no studies exploring the longitudinal experiences of patients were found. DESIGN: A qualitative study with a longitudinal, exploratory design. METHODS: Data were collected through individual interviews with 11 patients over 16 weeks. The data were analysed using qualitative content analysis. The COREQ checklist guided the reporting of the study. RESULTS: Three themes were identified: (1) potential to facilitate self-governance of life-limiting illness in daily life, (2) need for interpersonal relationships and connections, and (3) experiences of increased responsibility and unclear utility of the Remote Home Care. CONCLUSION: The results showed that remote home care facilitated patients' daily routines, symptom control and improved illness-management at home. Interpersonal relationships with healthcare professionals were considered pivotal for satisfactory follow-up. Infrastructural glitches regarding data access, information sharing and lack of continuous adjustments of the application represented major challenges, with the potential to impose a burden on patients with cancer in the palliative phase. RELEVANCE TO CLINICAL PRACTICE: By exploring the experiences of patients in palliative care over time as the disease progresses, this study provides constructive insights for the design and development of welfare technology applications and optimal care strategies. PATIENT OR PUBLIC CONTRIBUTION: The remote home care was developed by interdisciplinary healthcare professionals.

Caught between ideals and reality: Phenomenological-hermeneutic study of healthcare providers' experiences while interacting with mechanically ventilated patients.

This study aimed to explore healthcare providers' experiences of their communication and interaction with conscious patients on mechanical ventilation in intensive care. Nurses, physicians, and physiotherapists were interviewed after they had been video recorded in naturally occurring interactions with patients. The interviews were analyzed using a phenomenological-hermeneutical approach. Three themes were identified: The willingness to engage and understand the mechanically ventilated patient, the potential risk of neglecting the patient in the encounters, and provider interdependence as the core of intensive care. The themes elicited how providers handled the dissonance between their own personal ideals of care and their real-world encounters with patients and other professionals. The healthcare providers were aware of how easily patients could be neglected while being non-vocal, and therefore invested time and effort communicating with the patients. Based on their personal ideals of patient participation and autonomy, it was difficult to perform procedures, such as weaning off the ventilator or mobilization, to which the patient was opposed. Interprofessional collaboration was valued by the providers in such situations. The study revealed that providers need to consider the communication barriers that exist on the individual and team levels when interacting with patients on mechanical ventilation.

Nursing interventions to cover patients' basic needs in the intensive care context - A systematic review.

AIM: To examine the content, theoretical frameworks and effectiveness of nursing interventions utilizing patient-reported outcome measures (PROMs) in the intensive care unit (ICU). DESIGN: A systematic review and narrative synthesis following the guidelines of the preferred reporting items for systematic reviews and meta-analysis checklist. METHODS: We searched the MEDLINE, CINAHL, PsycINFO, SweMed and Cochrane controlled trials register (CENTRAL) databases for studies evaluating interventions primarily delivered by nurses in the ICU. Two independent reviewers performed study selection, data extraction and risk of bias. RESULTS: Twenty-two studies were included, whereas only seven studies used a theoretical framework. The interventions were heterogeneous in content, duration and choice of PROMs. Outcomes were related to covering patients' and families' basic needs, described by Henderson as essential functions of nursing. Several studies reported positive intervention effects, and nurses' communication and psychosocial care were considered essential components of nursing interventions in the ICU.

Non-invasive ventilation in the palliative care of patients with chronic obstructive pulmonary disease: a scoping review protocol.

INTRODUCTION: Patients with advanced chronic obstructive pulmonary disease (COPD) experience a great symptom burden. Breathlessness is a very frequently reported symptom that negatively affects all aspects of daily life and could lead to fear of dying. Non-invasive ventilation (NIV) could be an important palliative measure to manage breathlessness in patients with advanced COPD. We decided to conduct a scoping review to attain an overview of the existing research and to identify knowledge gaps. This scoping review aims to systematically map published studies on the use of NIV in the palliative care of COPD patients, including the perspectives and experiences of patients, families and healthcare professionals. METHODS AND ANALYSIS: This scoping review will employ the framework of Arksey and O'Malley. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. A comprehensive and systematic search strategy will be developed in cooperation with an experienced librarian. Database searches will be conducted in AMED, PEDro, Embase, CINAHL, PsycInfo and MEDLINE in February 2021. Pairs of authors will independently assess studies' eligibility and extract data using a standardised data-charting form. The data will be inductively summarised and organised thematically. The results will be discussed with an advisory board consisting of nurses and physicians from respiratory and intensive care units. ETHICS AND DISSEMINATION: Approval for the workshop with the advisory board has been attained from the Norwegian Centre for Research Data (480222), and approval will be attained from the Personal Data Protection Officers of the participating hospitals. All advisory board participants will sign an informed written consent before participation. The results could contribute to developing the body of evidence on the use of NIV in the palliative care of COPD patients and serve to identify directions for future research.

Implementing welfare technology in palliative homecare for patients with cancer: a qualitative study of health-care professionals' experiences.

BACKGROUND: Introducing welfare technology in home-based palliative care has been suggested to be beneficial for improving access to health care at home and enhancing patients' feelings of security and safety. However, little is known about the experiences of municipal health-care professionals using welfare technology in palliative home care. The aim of this study was to explore municipal health-care professionals' experiences regarding the significant challenges, facilitators, and assessments associated with implementing a technological solution named "remote home care" in palliative home care for patients with cancer. METHODS: A qualitative, descriptive, exploratory design was used. Data were collected through focus-group interviews and individual semi-structured interviews with interdisciplinary health-care professionals who had experience using remote home care in clinical encounters with cancer patients who were in the palliative phase and living at home. Data were analyzed using qualitative content analysis. RESULTS: Three themes were identified: 1) shifting from objective measures to assessing priorities for patients, 2) lack of experience and personal distress regarding cancer inhibits professional care, and 3) prominent organizational challenges undermine the premise of remote home care. CONCLUSION: The results showed that shifting from a disease-focused to a person-centered approach enables health-care professionals to assess patients' personal priorities. However, health-care professionals' uncertainty and lack of knowledge and experience, along with organizational issues concerning information-sharing, represent great challenges that have the potential to inhibit professional care. The availability of networks through which difficult issues can be discussed was highlighted as being a fundamental resource for facilitating the provision of care.

Health-care professionals' assessment of a person-centred intervention to empower self-management and health across chronic illness: Qualitative findings from a process evaluation study.

BACKGROUND: Person-centred care (PCC) empowers patients to manage their chronic illness and promote their health in accordance with their own beliefs, values and preferences. Drawing on health-care professional's (HCP's) experiences implementing an empowerment-focused, person-centred intervention called the Bodyknowledging Program (BKP), we undertook a process evaluation that aimed to assess the impact on patient health and well-being. METHODS: We used individual in-depth interviews and semi-structured focus groups comprising n = 8 interprofessional HCP who facilitated intervention sessions with n = 58 patients situated in Norwegian specialist care sites. Content analysis was used to analyse the data and summarize major themes. RESULTS: Health-care professional interviews revealed four main ways in which the intervention operated in support of health-related patient outcomes: (i) addressing the whole person; (ii) hope and affirmation; (iii) expanding recovery; and (iv) social support and revitalized relationships. The intervention provided new tools for patients to understand the social, emotional and physical impact of their illness. Health-care professional reported new insights to facilitate patient engagement and to promote patients' health. CONCLUSIONS: The Bodyknowledging Program facilitated patient engagement through the promotion of patient-centred care while developing the patients' ability to exploit their own resources for effectively managing their health within illness. The process evaluation supported the underlying theoretical basis of the intervention and was suggestive of its potential transferability elsewhere.

Patient involvement in micro-decisions in intensive care.

OBJECTIVE: The objective of this study was to explore how bedside micro-decisions were made between conscious patients on mechanical ventilation in intensive care and their healthcare providers. METHODS: Using video recordings to collect data, we explored micro-decisions between 10 mechanically ventilated patients and 60 providers in interactions at the bedside. We first identified the types of micro-decisions before using an interpretative approach to analyze the decision-making processes and create prominent themes. RESULTS: We identified six types of bedside micro-decisions; non-invited, substituted, guided, invited, shared and self-determined decisions. Three themes were identified in the decision-making processes: 1) being an observer versus a participant in treatment and care, 2) negotiating decisions about individualized care (such as tracheal suctioning or medication),and 3) balancing empowering activities with the need for energy restoration. CONCLUSION: This study revealed that bedside decision-making processes in intensive care were characterized by a high degree of variability between and within patients. Communication barriers influenced patients' ability to express their preferences. An increased understanding of how micro-decisions occur with non-vocal patients is needed to strengthen patient participation. PRACTICE IMPLICATIONS: We advise providers to make an effort to solicit patients' preferences when caring for critically ill patients.

Elements in scenario-based simulation associated with nursing students' self-confidence and satisfaction: A cross-sectional study.

Aim: To identify elements in scenario-based simulation associated with nursing students' satisfaction with the simulation activity and self-confidence in managing the simulated patient situation. The study will provide insight to improve the use of simulation as a learning strategy. Design: A cross-sectional study. Method: The Student Satisfaction and Self-Confidence in Learning scale was used as the outcome measure to identify associations with elements of the Simulation Design Scale and the Educational Practices Questionnaire scale after scenario-based simulation using patient simulators. First-year nursing students at a university college in Norway (N = 202) were invited to participate and (N = 187) responded to the questionnaires. Results: The mean scores for self-confidence and satisfaction were 4.16 and 4.57, respectively. In the final multiple linear regression analysis, active learning was associated with satisfaction with the simulation activity, while clear objectives and active learning were associated with self-confidence in managing the simulated patient situation.

Attention-seeking actions by patients on mechanical ventilation in intensive care units: A phenomenological-hermeneutical study.

AIMS AND OBJECTIVES: The aim of this study was to explore the interaction between mechanically ventilated patients and healthcare personnel in intensive care units (ICUs), with a special emphasis on patients' initiative to communicate. BACKGROUND: Patients on mechanical ventilation in ICUs tend to be less sedated today compared to standard care in the past. Their experiences of being voiceless may cause emotional distress, and for many patients, communication is difficult. Healthcare personnel are reported to be the main initiators of the communication exchanges that occur. DESIGN: An observational study with a phenomenological-hermeneutical approach. METHODS: Video recording was used to collect data on the naturally occurring communication and interaction. Ten conscious and alert patients from two Norwegian ICUs were recruited. Two relatives and a total of sixty healthcare personnel participated. Content analysis was conducted, with focus on both the manifest and latent content meaning. RESULTS: We found a total of 66 situations in which patients attempted to attract the attention of others on their own initiative in order to express themselves. Attention-seeking actions, defined as the act of seeking attention and understanding without a voice, became an essential theme. Four patterns of interaction were identified: immediately responded to, delayed response or understanding, intensified attempts or giving up. Patients had a variety of reasons for seeking attention, which were classified into four domains: psychological expressions, physical expressions, social expressions and medical treatment. CONCLUSIONS: Patients' attention-seeking actions varied in content, form and the types of responses they elicited. The patients had to fight to first gain joint attention and then joint understanding. This was both energy-draining and time-consuming. RELEVANCE TO CLINICAL PRACTICE: Healthcare personnel need to spend more time for communication purposes, giving attention and being more alert to bodily or symbolic gestures to understand the patient's needs.

Health promotion in specialist and community care: how a broadly applicable health promotion intervention influences patient's sense of coherence.

BACKGROUND: Chronic illness health interventions aim to strengthen individuals' wellness resources, in addition to their ability to handle their condition. This presupposes a partnership between patients and professionals and flexibility in care organization. AIM: This study aims to investigate possible changes in individuals' sense of coherence while living with long-term illness as they engage in a broadly applicable health promotion intervention developed in specialist care settings that was later implemented in the community care context. METHOD: This study had a pre-postdesign. Sense of coherence was measured using the SOC-29 questionnaire at baseline and within 14 days of programme completion. The total baseline sample included 108 Norwegian adults (aged 21-89) with chronic illness. Data were analysed using paired samples t-tests. RESULTS: In both clinical sites, the total sample's mean SOC score changed positively from the baseline to the follow-up 4 months later. This change was larger for the participants in the community care context. Manageability increased significantly for women. Significant positive changes in SOC score and the manageability dimension were also identified among participants who had children. Similar findings were found for those who were living with a partner, as well as for public transfer payment recipients. CONCLUSION: The intervention contributed to a positive change in participants' SOC while living with illness. The findings revealed that the intervention is a flexible health promotion tool across age, diagnostic categories and clinical sites. The community participants' SOC changed the most, which indicates that the intervention is especially relevant in the follow-up of persons living with long-term illness within the community. The intervention contributes to a shift of perspectives in health care towards strenght-based care and health within illness.

Patients' experiences of health transitions in pulmonary rehabilitation.

People who live with chronic obstructive pulmonary disease (COPD) experience major changes in health. Coping with the illness and caring for themselves places extensive demands on them. Thus, pulmonary rehabilitation (PR) is recommended as a means to facilitate healthy transitions in everyday life with COPD. This study explores the experience of patients with COPD in terms of their transitions in health during and after PR. The research was inspired by interpretive phenomenology. Thirty-three individual qualitative interviews were conducted with eighteen patients recruited from Norwegian PR units. A thematic analysis of the interviews was performed. The interviewees described participation in PR as a time of increasing awareness of opportunities for health and well-being with strengthened hope. The year following PR was dominated by their ongoing challenge to acknowledge limitations and explore opportunities in everyday life. Continuation of healthy transitions was facilitated by peer and professional support. The study highlights the personal resources that patients with COPD have access to in order to promote their own health. The study also highlights their vulnerability during illness and rehabilitation. The findings critique time-limited PR and support the current trends towards patient-centred rehabilitation efforts that incorporate user involvement and self-management education.

Experiences of self-blame and stigmatisation for self-infliction among individuals living with COPD.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a major health problem estimated to become the third leading cause of death and the fifth leading cause of disability by 2020. Tobacco control is the most effective protective intervention, and it serves as a key element in patient counselling. However, a focus on tobacco control may cause unintended and adverse effects to individuals who already suffer from the disease. AIM: The current study aims to understand how patients with COPD experience daily life in a society with heavy emphasis on tobacco control. METHOD: The design was longitudinal and descriptive. The sample included thirteen men and five women with COPD, recruited from pulmonary rehabilitation units. Data were collected by means of qualitative interviews and analysed using qualitative content analysis with search for meanings. FINDINGS: The main theme was a feeling of being exiled in the world of the healthy, because of self-blame and society's stigmatisation of COPD as a self-inflicted disease. The participants experienced feelings of disgrace through subtle blame and a lack of support from their social network, health care encounters and larger society. This seemed to increase illness-related strain and a need for defensive actions. LIMITATIONS: A small convenience sample, local cultural influence, the study's wide scope and lack of health professionals' views must be considered. CONCLUSION: This study illuminates the challenge of how to combine health advice on smoking cessation with nonblaming psycho-social support throughout the course of COPD. An awareness of the potential for stigma, the nature of nicotine dependence and broadened causal explanations for the disease may improve the ability of caregivers to address patient strain and its negative association with coping and well-being. Dilemmas in health communication concerning COPD patients' experience of stigma and negative emotional response should be further explored.

'Belonging'. 'Patients' experiences of social relationships during pulmonary rehabilitation.

AIM: To unpack and interpret descriptions of experiences of social relationships during pulmonary rehabilitation (PR) for people living with chronic obstructive pulmonary disease (COPD). METHOD: Inspired by interpretive phenomenology, individual qualitative interviews were conducted twice with 18 persons from COPD rehabilitation units in two general hospitals. Qualitative content analysis was performed. RESULTS: Analysis of the interviews revealed the overarching theme of belonging. The participants emphasised social integration in rehabilitation groups as well as support from peers and health-care personnel as important dimensions of social relationships with regard to PR. Active participation in and engagement with the groups provided opportunities for patients to share their knowledge, encouraged mutual trust, and support and increased self-confidence, and motivation for self-care and further social participation. Integration in the groups and perceived support during PR made coping and adaptation easier and had a positive effect on quality of life. CONCLUSIONS: Patients' perspectives on PR were strongly influenced by certain facets of social relationships, such as social integration and social support. Patients', peers' and health-care professionals' strategies to promote social support and social integration should be further explored in the future, both in different contexts and for longer periods of time.