Background Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable fibrotic lung disease in which patients and caregivers report a high symptom burden. Symptoms are often poorly managed and patients and caregivers struggle to alleviate their distress in the absence of self-management support.
Aim To explore perceptions of symptoms, symptom management strategies and self-efficacy for patients with IPF and caregivers who received self-management education and action plans created and provided in a Multidisciplinary Collaborative Interstitial Lung Disease (MDC-ILD) Clinic.
Design A qualitative study was conducted with participants recruited from the MDC-ILD Clinic. Participants received an early integrated palliative approach; most attended ILD pulmonary rehabilitation and some received home care support. Semistructured interviews were conducted. Patient participants completed Measure Yourself Medical Outcome Profile (MYMOP) for symptom assessment and Chronic Obstructive Pulmonary Disease Self-Efficacy Scale to assess self-management efficacy.
Results Thirteen patients and eight self-declared caregiver participants were interviewed. IPF severity ranged from mild to advanced disease. Participants integrated and personalised self-management strategies. They were intentional and confident, focused on living well and engaged in anticipatory planning. Twelve participants completed the MYMOP. Five reported dyspnoea. Four reported fatigue as an additional or only symptom. One reported cough. Five declared no dyspnoea, cough or fatigue. Participants reported 80% self-efficacy in symptom management.
Conclusions The approach to symptom self-management and education was beneficial to patients with IPF and caregiver participants. Participants personalised the strategies, focusing on living, and planned both in the moment and for the future. They were confident and expressed dignity and meaning in their lives.
- respiratory conditions
- quality of life
- symptoms and symptom management
- supportive care
Data availability statement
Data are available upon reasonable request. Deidentified participant data are available upon reasonable request from MK (https://orcid.org/0000-0003-4645-6292).
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MK and CP contributed equally.
Contributors CP, SY and MK contributed to the study design. CP contacted and interviewed the participants. CP, JRE and MK analysed the qualitative data. NA, MK and SY analysed the quantitative data. All authors contributed to data interpretation, and drafted, revised and approved the manuscript for publication.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.