Important, misunderstood, and challenging: a qualitative study of nurses' and allied health professionals' perceptions of implementing self-management for patients with COPD.

Hannah ML Young,1 Lindsay D Apps,1 Samantha L Harrison,1 Vicki L Johnson-Warrington,1 Nicky Hudson,2 Sally J Singh1,3 1National Institute of Health Research CLAHRC-LNR Pulmonary Rehabilitation Research Group, University Hospitals of Leicester NHS Trust, 2School of Applied Social Sciences, De Montfort University, Leicester, 3Applied Research Centre in Health and Lifestyle Interventions, Coventry University, Coventry, UK Background: In light of the growing burden of COPD, there is increasing focus on the role of self-management for this population. Currently, self-management varies widely. Little is known either about nurses’ and allied health professionals’ (AHPs’) understanding and provision of self-management in clinical practice. This study explores nurses’ and AHPs’ understanding and implementation of supported COPD self-management within routine clinical practice. Materials and methods: Nurses and AHPs participated in face-to-face semistructured interviews to explore their understanding and provision of COPD self-management, as well as their perceptions of the challenges to providing such care. Purposive sampling was used to select participants from a range of professions working within primary, community, and secondary care settings. Three researchers independently analyzed each transcript using a thematic approach. Results: A total of 14 participants were interviewed. Nurses and AHPs viewed self-management as an important aspect of COPD care, but often misunderstood what it involved, leading to variation in practice. A number of challenges to supporting self-management were identified, which related to lack of time, lack of insight regarding training needs, and assumptions regarding patients’ perceived self-management abilities. Conclusion: Nurses and AHPs delivering self-management require clear guidance, training in the use of effective self-management skills, and education that challenges their preconceptions regarding patients. The design of health care services also needs to consider the practical barriers to COPD self-management support for the implementation of such interventions to be successful. Keywords: self-management, COPD, qualitative, interviews, nurses, allied health professional

How do informal self-care strategies evolve among patients with chronic obstructive pulmonary disease managed in primary care? A qualitative study

Background: There is much description in the literature of how patients with chronic obstructive pulmonary disease (COPD) manage their breathlessness and engage in self-care activities; however, little of this is from the perspective of those with less severe disease, who are primarily managed in primary care. This study aimed to understand the self-care experiences of patients with COPD who are primarily managed in primary care, and to examine the challenges of engaging in such behaviors. Methods: Semistructured interviews were carried out with 15 patients with COPD as part of a larger project evaluating a self-management intervention. Thematic analysis was supported by NVivo software (version 8, QSR International, Melbourne, Australia). Results: Three main themes are described, ie, experiencing and understanding symptoms of COPD, current self-care activities, and the importance of family perceptions in managing COPD. Conclusion: Self-care activities evolved spontaneously as participants experienced symptoms of COPD. However, there was a lack of awareness about whether these strategies would impact upon symptoms. Perceptions of COPD by family members posed a challenge to self-care for some participants. Health care professionals should elicit patients' prior disease experiences and utilize spontaneous attempts at disease management in future self-management. These findings have implications for promoting self-management and enhancing quality of life

A comparison of a structured home-based rehabilitation programme with conventional supervised pulmonary rehabilitation:A randomised non-inferiority trial

Background: Standardised home-based pulmonary rehabilitation (PR) programmes offer an alternative model to centre-based supervised PR for which uptake is currently poor. We determined if a structured home-based unsupervised PR programme was non-inferior to supervised centre-based PR for participants with COPD. Methods: A total of 287 participants with COPD who were referred to PR (187 male, mean (SD) age 68 (8.86) years, FEV1% predicted 48.34 (17.92)) were recruited. They were randomised to either centre-based PR or a structured unsupervised home-based PR programme including a hospital visit with a healthcare professional trained in motivational interviewing, a self-management manual and two telephone calls. Fifty-eight (20%) withdrew from the centre-based group and 51 (18%) from the home group. The primary outcome was dyspnoea domain in the chronic respiratory disease questionnaire (Chronic Respiratory Questionnaire Self-Report; CRQ-SR) at 7 weeks. Measures were taken blinded. We undertook a modified intention-to-treat (mITT) complete case analysis, comparing groups according to original random allocation and with complete data at follow-up. The non-inferiority margin was 0.5 units. Results: There was evidence of significant gains in CRQ-dyspnoea at 7 weeks in both home and centre-based groups. There was inconclusive evidence that home-based PR was non-inferior to PR in dyspnoea (mean group difference, mITT: −0.24, 95% CI −0.61 to 0.12, p=0.18), favouring the centre group at 7 weeks. Conclusions: The standardised home-based programme provides benefits in dyspnoea. Further evidence is needed to definitively determine if the health benefits of the standardised home-based programme are non-inferior or equivalent to supervised centre-based rehabilitation

The development and pilot testing of the Self-management Programme of Activity, Coping and Education for Chronic Obstructive Pulmonary Disease (SPACE for COPD)

Purpose: There is no independent standardized self-management approach available for chronic obstructive pulmonary disease (COPD). The aim of this project was to develop and test a novel self-management manual for individuals with COPD. Patients: Participants with a confirmed diagnosis of COPD were recruited from primary care. Methods: A novel self-management manual was developed with health care professionals and patients. Five focus groups were conducted with individuals with COPD (N = 24) during development to confirm and enhance the content of the prototype manual. The Self-management Programme of Activity, Coping and Education for Chronic Obstructive Pulmonary Disease (SPACE for COPD) manual was developed as the focus of a comprehensive self-management approach facilitated by health care professionals. Preference for delivery was initial face-to-face consultation with telephone follow-up. The SPACE for COPD manual was piloted with 37 participants in primary care. Outcome measures included the Self-Report Chronic Respiratory Questionnaire, Incremental Shuttle Walk Test, and Endurance Shuttle Walking Test (ESWT); measurements were taken at baseline and 6 weeks. Results: The pilot study observed statistically significant improvements for the dyspnea domain of the Self-Report Chronic Respiratory Questionnaire and ESWT. Dyspnea showed a mean change of 0.67 (95% confidence interval 0.23–1.11, P = 0.005). ESWT score increased by 302.25 seconds (95% confidence interval 161.47–443.03, P < 0.001). Conclusion: This article describes the development and delivery of a novel self-management approach for COPD. The program, incorporating the SPACE for COPD manual, appears to provoke important changes in exercise capacity and breathlessness for individuals with COPD managed in primary care

A self-management programme for COPD: A randomised controlled trial

Studies of programmes of self-management support for chronic obstructive pulmonary disease (COPD) have been inconclusive. The Self-Management Programme of Activity, Coping and Education (SPACE) FOR COPD is a 6-week self-management intervention for COPD, and this study aimed to evaluate the effectiveness of this intervention in primary care. A single-blind randomised controlled trial recruited people with COPD from primary care and randomised participants to receive usual care or SPACE FOR COPD. Outcome measures were performed at baseline, 6 weeks and 6 months. The primary outcome was symptom burden, measured by the self-reported Chronic Respiratory Questionnaire (CRQ-SR) dyspnoea domain. Secondary outcomes included other domains of the CRQ-SR, shuttle walking tests, disease knowledge, anxiety, depression, self-efficacy, smoking status and healthcare utilisation. 184 people with COPD were recruited and randomised. At 6 weeks, there were significant differences between groups in CRQ-SR dyspnoea, fatigue and emotion scores, exercise performance, anxiety, and disease knowledge. At 6 months, there was no between-group difference in change in CRQ-SR dyspnoea. Exercise performance, anxiety and smoking status were significantly different between groups at 6 months, in favour of the intervention. This brief self-management intervention did not improve dyspnoea over and above usual care at 6 months; however, there were gains in anxiety, exercise performance, and disease knowledge

Patient perceptions of living with severe asthma: Challenges to effective management

The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link.Background: The management of severe asthma poses many challenges related to treatment, adherence and psychosocial morbidity. There is little direct data from the patient perspective to understand and negotiate the complexities of managing severe asthma Objective: To explore the patient perceptions of living with severe asthma and the experience of managing severe asthma, in order to better understand the support that might promote more effective self-management for severe asthma. Methods: Participants were recruited from a specialist Difficult Asthma Service. Semi-structured interviews were conducted by researchers independent of the patient’s care. Interviews were transcribed verbatim and inductive Thematic Analysis was performed. Results: Twenty-nine participants [13 male, mean (SD) age 49.5 (13.6) years, mean Asthma Control Questionnaire 2.2 (1.2)] participated in an interview. Analysis resulted in four major themes describing the experience and challenges to managing severe asthma: Understanding of severe asthma, emotional impact of living with severe asthma (sub-theme: fear of hospitalisation), public perceptions of asthma, and concerns about medications. Conclusion: Healthcare professionals need to consider and discuss with patients their perceptions of severe asthma and the relevant treatments; particular attention should focus around education of disease control and actively exploring thoughts around hospitalisation. Our data highlights the potential for psychological and social support to enhance self-management by directly addressing the wide-ranging individual challenges patients face. There is also a need for greater public awareness and education about severe asthma to minimise patient distress particularly in the work environment