Raised illness mastering - a phenomenological hermeneutic study of chronic obstructive pulmonary disease patients' experiences while participating in a long-term telerehabilitation programme.

PURPOSE: To investigate COPD patients' experience on the mastering of their illness during participation in a long-term interprofessional and cross-sectoral telerehabilitation programme called > C☺PD-Life≫. MATERIALS AND METHODS: A phenomenological-hermeneutic study design with combined participant observations and individual interviews formed a continuous data generation among fifteen patients while they participated in the programme. Data underwent a three-levelled interpretation inspired by the theory of the French philosopher Paul Ricoeur. RESULTS: During participation in > C☺PD-Life≫ patients experienced an improvement in how to master their living with COPD. They felt invigorated by an interprofessional rehabilitation team to raise how to deal with physical, mental, social and relational challenges. Programme participation was experienced as surprisingly easy by the patients. CONCLUSIONS: The telerehabilitation solution > C☺PD-Life≫ provides benefits for COPD patients who report improved illness-mastering, attendance and outcome of rehabilitation, as well as enhanced physical and social activity. As an assistive technology intervention, > C☺PD-Life≫ appears to be a valuable addition to existing rehabilitation programmes. However, more knowledge is required to further understand the full-range capacity and impact of tele-based pulmonary rehabilitation.Implications for RehabilitationNew models of rehabilitation to patients with Chronic Obstructive Pulmonary Disease (COPD) is imperative for the development of more suitable health care support to these patients. > C☺PD-Life≫ is a twenty-six-long telerehabilitation intervention program for COPD patients, delivered by an interdisciplinary team collaborating between hospital and the municipality health care service.This paper aims to explore COPD patients' experiences on the mastering of their illness while participating in > C☺PD-Life≫.Patients report improved illness-mastering, attendance, and outcome of rehabilitation, as well as enhanced physical and social activity by participating in the program.As an assistive technology solution, > C☺PD-Life≫ is shown to provide the potential to expand equally assessable support in improving independence, functioning, and well-being to COPD patients.

Heterogeneity in Danish lung choirs and their singing leaders: delivery, approach, and experiences: a survey-based study.

OBJECTIVES: Singing is considered a beneficial leisure time intervention for people with respiratory diseases, and lung choirs have gained increasing attention. However, there is no available guideline on preferred methodology, and hence, outcomes, delivery, and benefits are unclear. The present study investigated for the first time ever emerged delivery, approach, and experiences in Danish lung choirs and their singing leaders, hypothesising the array to be heterogeneous, without disease-specific approach, and a challenging field to navigate for the singing leaders. SETTING: An online survey comprising 25 questions was performed individually, May 2017, in Denmark. PARTICIPANTS: Current singing leaders of Danish lung choirs, identified by hand searches on the internet. In total, 33 singing leaders in formal and informal settings were identified and 20 (67%) responded. PRIMARY AND SECONDARY OUTCOME MEASURES: Distribution in content, delivery, and approach; level of disease-specific knowledge and modification; experience of challenges and benefits. Quantitative variables were counted, and an inductive content analysis approach was used for the qualitative study component. RESULTS: The lung choirs were heterogeneous concerning setting, duration, and content. The approach was traditional without disease-specific content or physical activity. Most singing leaders held various academic degrees in music, but lacked skills in lung diseases. However, they experienced lung choirs as a highly meaningful activity, and reported that participants benefited both musically, psychosocially, and physically. Singing leaders were enthusiastic regarding potentials in the 'arts-and-health' cross-field and experienced an expansion of their role and overall purpose, professionally as well as personally. However, they also experienced insecurity, inadequacy, and isolation, and requested methodological guidelines, formal support, and peer network. CONCLUSION: Danish lung choirs are led without any disease-specific guideline or methodological approach. Further studies are needed to develop and distribute a preferred methodological approach. TRIAL REGISTRATION NUMBER: This study is linked to clinical trial number NCT03280355 and was performed prior to data collection and results of the clinical trial.

Accommodating to a troubled life - chronic obstructive pulmonary disease patients' experiences and perceptions of self-image during the course of rehabilitation.

Background: To tailor future rehabilitation programmes for patients with chronic pulmonary obstructive disease, there is a need for more in-depth knowledge about what is essential to these patients and how they perceive their self-image while participating in rehabilitation. Therefore, this study aims to explore patients' experiences and perception of self-image during pulmonary rehabilitation.Methods: Twenty-one patients were followed by participant observations during standard rehabilitation complicity supplemented with final individual interviews. Phenomenological-hermeneutic analysis and interpretation were applied.Results: Through a rewarding peer fellowship, patients became engaged in rehabilitation and improved their capacity to embrace and manage their illness. Through a humorous interplay, encouragement to live with the life-threating disease developed. While understanding themselves in a wider perspective, patients enhanced enablement to shape life according to personal satisfaction. Although participating in the group-based programme was mostly invigorating, it was, however, sometimes perceived as a stressful overload. More individualized support from healthcare professionals was warrented.Conclusions: Group-based pulmonary rehabilitation can support chronic pulmonary obstructive disease patients towards significant change in self-image and health behaviour, leading to improved illness management. Enlarged opportunities to benefit from peer-fellowship and enhanced focus on what is essential to the participants might expand the rehabilitation yields.

The impact of a personalised action plan delivered at discharge to patients with COPD on readmissions: a pilot study.

BACKGROUND: Self-management interventions in COPD, including action plans, have the potential to increase quality of life and to reduce respiratory-related hospitalisations. However, knowledge is still sparse of the effectiveness of a personally tailored action plan introduced at or right after discharge from hospital. AIM: This pilot study aimed to test whether a personalised, stepwise action plan supported with a short instruction provided at or postdischarge after an acute exacerbation in chronic obstructive pulmonary disease admission as an addition to usual care reduces readmissions and symptom burden, including anxiety and depression levels at 3-month follow-up. METHODS: The study was carried out in a randomised controlled design with follow-up after 3 months. In all, 75 participants were randomly assigned to either an intervention group that received an action plan, including the COPD Assessment Test (CAT), or to a control group that received usual care. The incidence of COPD-related readmissions was measured as the primary outcome. RESULTS: Compared to the control group, the action plan group significantly reduced the incidence of readmissions. The action plan group showed a trend towards a significant decrease in HADS-depression, but none in HADS-anxiety. Significant improvements in CAT scores were observed for the participants in the intervention group. Only inferior minor differences were found in use of inhalation therapy. CONCLUSIONS: A personally tailored action plan introduced at or postdischarge combined with follow-up support is an effective self-management tool to support recovery and to reduce unnecessary readmissions. In future follow-up care, the healthcare professional must initiate the action plan at discharge and immediately after having the opportunity to follow the patient at home. This might require healthcare professionals working across healthcare sectors, who support patients until they have the needed confidence and competence in using the plan.

Breathing through a troubled life - a phenomenological-hermeneutic study of chronic obstructive pulmonary disease patients' lived experiences during the course of pulmonary rehabilitation.

Purpose: Exploring real-life experiences of Chronic Obstructive Pulmonary Disease (COPD) patients during rehabilitation can contribute with new knowledge of what has significance for their participation and chance for improved health and well-being. Therefore, this study aims to gain in-depth knowledge of COPD patients' lived experiences while following standard pulmonary out-patient rehabilitation. Methods: Combined participant observations and interviews were conducted among 21 participants in pulmonary rehabilitation. A three-leveled phenomenological-hermeneutic interpretation was applied. Results: Living with COPD was challenging due to dyspnea and other physical troubles. This caused a lack of trust in the body and complicated rehabilitation participation. When improving management of breath during rehabilitation, the patients gained a new sense of trust in the body. This was accompanied by a nascent hope and increased well-being. However, not succeeding in this left patients with a persistent lack of hope. Conclusions: Comprehensive troubles in living with COPD paradoxically prevents patients' prospect of overcoming a perceived lack of trust in their body during standard pulmonary rehabilitation. Enhancing breath management has a significant impact on COPD patients' trust in own capabilities to improve well-being and health. Future rehabilitation must accommodate COPD patients' troubles by longer-lasting, well-coordinated, individually supportive and more easily accessible programmes.

A Ricoeur-Inspired Approach to Interpret Participant Observations and Interviews.

In-depth knowledge of what it means to patients to receive health care services is crucial to the development of adequate protocols for nursing. Qualitative research allows us to gain important insight into what is experienced by and meaningful to patients. The French philosopher Paul Ricoeur's thoughts have inspired qualitative researchers to conduct various forms of analysis and interpretation that increase our knowledge of ways of being-in-the-world. This article describes and discusses how a specific approach to derive in-depth knowledge of patients' lived experiences can be taken. A combination of participant observations and interviews was used to generate data. Field notes and transcribed interviews were gathered as one collective text and analyzed and interpreted with inspiration from Ricoeur's thoughts on narratives and interpretation. This approach is argued to be a significant way of developing in-depth knowledge of patients' lived experiences. Such knowledge is important within nursing science.

Between hope and hopelessness: COPD patients' and their family members' experiences of interacting with healthcare providers - a qualitative longitudinal study.

BACKGROUND: Patient-family-healthcare provider interaction seems important for patients with chronic obstructive pulmonary disease (COPD) and their family members' self-management practices. Because the need for support might be enhanced after a hospitalisation, it might be beneficial to explore this interaction further in follow-up health care. AIM: To explore the meaning of patients' and their family members' experiences of interacting with healthcare providers to their daily self-management over time. METHODS: Participant observations and in-depth interviews were conducted repeatedly with 10 patients and seven family members during follow-up visits at hospital and at the participants' homes between 2014 and 2016. A phenomenological-hermeneutical approach was used to interpret the data. RESULTS: 'Between hope and hopelessness' involved frustrations, concerns and doubts, all of which could relate to the interaction with healthcare providers. 'Seeking support from healthcare services', 'navigating between healthcare providers' and 'collaborating with healthcare providers at home' could entail opportunities to strengthen self-management and hope; however, it could also entail reduced faith in getting the right help and hopelessness. CONCLUSION: During a period of transition after hospitalisation, available and well-coordinated healthcare services, and alliances with healthcare professionals are crucial to COPD patients and their family members in terms of their self-management, hope and well-being.

The experience of being a participant in one's own care at discharge and at home, following a severe acute exacerbation in chronic obstructive pulmonary disease: a longitudinal study.

PURPOSE: In healthcare related to hospital discharge and follow-up, it is acknowledged that patient participation can strengthen self-management in patients with chronic obstructive pulmonary disease. However, the meaning of participation in care following a severe acute exacerbation is less described. Therefore, the aim of this part of a larger study was to explore patients' experiences of participating in their care around discharge and in their subsequent day-to-day care at home. METHOD: The study was designed as a qualitative, longitudinal study. Data were collected by repeated participant observations and in-depth interviews with 15 patients within a period of 18 months post-discharge. A phenomenological-hermeneutic approach was used to interpret the data. RESULTS: Before discharge, the patients struggled to regain a sense of control in their efforts to build up strength, and acquire sufficient clarity and confidence to face self-management at home. At home, the patients strived to comply with advice and encouragement in a struggle to stay motivated and confident, and to ask for help. CONCLUSIONS: With more knowledge about patients' participation in care, healthcare professionals can encounter patients in ways that are sensitive to their specific care and support needs and, thereby, contribute to the promotion of patients' health and well-being.

Patients' and their family members' experiences of participation in care following an acute exacerbation in chronic obstructive pulmonary disease: A phenomenological-hermeneutic study.

AIM AND OBJECTIVES: To explore the experiences of patients with chronic obstructive pulmonary disease and their family members relating both to participation in care during hospitalisation for an acute exacerbation in chronic obstructive pulmonary disease, and to the subsequent day-to-day care at home. BACKGROUND: When recovering from an exacerbation, the challenges associated with an unpredictable health condition dominate everyday life for patients and can involve their family members. Proper patient and family participation in care during discharge and follow-up can help patients to improve self-management. However, knowledge of the significance of patient and family participation for recovery and subsequent everyday life is still limited. DESIGN: This study adopted a longitudinal design informed by ethnographic fieldwork principles. METHODS: Participant observations and interviews with 15 patients and 12 family members were conducted on a Danish hospital ward and twice at the participants' homes. A phenomenological-hermeneutic approach inspired by Ricoeur's theory of interpretation guided the data analysis. RESULTS: Participation in care was perceived as valuable, but could be associated with tensions and increased uncertainty. While patients mostly demonstrated a reactive approach to care, family members strived to be more proactive. In hospital, preparing for discharge included an effort to find a balance between powerlessness and influence during interactions with healthcare professionals. At home, managing further recovery and self-management were characterised by navigating between mutual pressure and consideration within the family. CONCLUSION: Family members play an important role in ensuring that patients are seen, heard and understood, but want to be acknowledged more by healthcare professionals. Appropriate interactions with healthcare professionals are crucial in order to support discharge and daily self-management. RELEVANCE TO CLINICAL PRACTICE: Knowledge of the challenges that patients with chronic obstructive pulmonary disease and their family members face in participating in care activities could inform future development of family-centred care approaches tailored to individual needs.