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

Cátia Caneiras, Cristina Jácome, Emília Moreira, Daniela Oliveira, Cláudia Camila Dias, Liliane Mendonça, Sagrario Mayoralas-Alises, João Almeida Fonseca, Salvador Diaz-Lobato, Joan Escarrabill, João Carlos Winck

Research output: Contribution to journalArticlepeer-review

14 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)268-275
Number of pages8
JournalPulmonology
Volume28
Issue number4
DOIs
Publication statusPublished - 1 Jul 2022
Externally publishedYes

Keywords

  • Chronic care model
  • Focus groups
  • Home mechanical ventilation
  • Long-term oxygen therapy
  • Patient experience
  • Quality of care

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