A qualitative study of patient and carer experiences with home respiratory therapies: long-term oxygen therapy and home mechanical ventilation

Abstract

Studies exploring the experience of patients receiving home respiratory therapies (HRT), such as long-term oxygen therapy (LTOT) and home mechanical ventilation (HMV), are still limited. This study focused on patients' and carers' experience with LTOT and HMV. An exploratory, cross-sectional qualitative study, using semi-structured focus groups, was carried out with 18 patients receiving HRT (median 71y, 78% male, 56% on both LTOT and HMV) and 6 carers (median age 67y, 67% female). Three focus groups were conducted in three regions of Portugal. Thematic analysis was performed by two independent researchers. Patients' and carers' experience was reflected in seven major topics, linked to specific time points and settings of the treatment: Initial symptoms/circumstances (n = 41), Prescription (n = 232), Implementation (n = 184), Carer involvement (n = 34), Quality of life impact (n = 301), Health care support/navigability (n = 173) and Suggestions (n = 14). Our findings demonstrate a general good perception of the HRT by patients and carers recognizing a significative quality of life impact improvement, while identifying specific points where improvements in healthcare are needed, particularly about navigability issues, articulation between the hospital, primary care and homecare teams, especially regardingprescriptionrenewal. This knowledge is crucial to promote a long-term HRT adherence and to optimize HRT delivery in line with patients' experience, needs, and values. Moreover, these key points can inform the development of a specific patient-reported experience measure (PREM) for patients on HRT, which is not currently available, and foster a more integrated respiratory care model.