TY - JOUR
T1 - Remote pulmonary rehabilitation for interstitial lung disease
T2 - developing the model using experience-based codesign
AU - Brighton, Lisa Jane
AU - Spain, Nannette
AU - Gonzalez-Nieto, Jose
AU - Ingram, Karen A.
AU - Harvey, Jennifer
AU - Man, William D.C.
AU - Nolan, Claire M.
N1 - Funding Information:
NS, JG-N, KAI and JH report no competing interests. LJB was funded by an ESRC Post-doctoral fellowship ES/X005259/1 and was supported by the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. CMN reports funding from the Royal Brompton and Harefield Charity, National Institute for Health Research for Patient Benefit and Brunel University London BRIEF award. WD-CM reports grants from National Institute for Health Research, grants from British Lung Foundation, outside the submitted work.
Funding Information:
This study was funded by a Royal Brompton and Harefield Charity Research Management Fund.
Publisher Copyright:
© 2024 BMJ Publishing Group. All rights reserved.
PY - 2024/2/20
Y1 - 2024/2/20
N2 - Background Remote delivery may improve access to pulmonary rehabilitation (PR). Existing studies are largely limited to individuals with COPD, and the interventions have lacked codesign elements to reflect the needs and experiences of people with chronic respiratory disease, their carers/families and healthcare professionals. The aim of this study was, using experience-based codesign (EBCD), to collaborate with people with interstitial lung disease (ILD), their carers/families and healthcare professionals, to codesign a remote PR programme ready for testing in a future study. Methods EBCD comprises interviews, stakeholder workshops and codesign meetings. One-to-one videorecorded interviews with purposively selected people with ILD with experience of PR, their carers/ families and healthcare professionals, were edited into a 20 min film. The film was shown at three audiorecorded stakeholder feedback events to identify key themes and touchpoints, and short-list key programme components. The programme was finalised at two further codesign workshops. Results Ten people with ILD, four carers/families and seven healthcare professionals were interviewed. Participants in the codesign workshops included service-user group: n=14 and healthcare professional group: n=11; joint event: n=21. Final refinements were made with small codesign teams, one comprising three people with ILD and one carer/family member, one with five healthcare professionals. The final codesigned model is a group based, supervised programme delivered by videoconference. Key elements of programme specific to ILD include recommendations to ensure participant safety in the context of desaturation risk, dedicated time for peer support and adaption of the education programme for ILD needs, including signposting to palliative care. Conclusion In this EBCD project, a remote PR programm for people with ILD was codesigned by service-users, their carers/families and multidisciplinary healthcare professionals. Future research should explore the feasibili and acceptability of this intervention.
AB - Background Remote delivery may improve access to pulmonary rehabilitation (PR). Existing studies are largely limited to individuals with COPD, and the interventions have lacked codesign elements to reflect the needs and experiences of people with chronic respiratory disease, their carers/families and healthcare professionals. The aim of this study was, using experience-based codesign (EBCD), to collaborate with people with interstitial lung disease (ILD), their carers/families and healthcare professionals, to codesign a remote PR programme ready for testing in a future study. Methods EBCD comprises interviews, stakeholder workshops and codesign meetings. One-to-one videorecorded interviews with purposively selected people with ILD with experience of PR, their carers/ families and healthcare professionals, were edited into a 20 min film. The film was shown at three audiorecorded stakeholder feedback events to identify key themes and touchpoints, and short-list key programme components. The programme was finalised at two further codesign workshops. Results Ten people with ILD, four carers/families and seven healthcare professionals were interviewed. Participants in the codesign workshops included service-user group: n=14 and healthcare professional group: n=11; joint event: n=21. Final refinements were made with small codesign teams, one comprising three people with ILD and one carer/family member, one with five healthcare professionals. The final codesigned model is a group based, supervised programme delivered by videoconference. Key elements of programme specific to ILD include recommendations to ensure participant safety in the context of desaturation risk, dedicated time for peer support and adaption of the education programme for ILD needs, including signposting to palliative care. Conclusion In this EBCD project, a remote PR programm for people with ILD was codesigned by service-users, their carers/families and multidisciplinary healthcare professionals. Future research should explore the feasibili and acceptability of this intervention.
UR - http://www.scopus.com/inward/record.url?scp=85185623120&partnerID=8YFLogxK
U2 - 10.1136/bmjresp-2023-002061
DO - 10.1136/bmjresp-2023-002061
M3 - Article
C2 - 38378779
AN - SCOPUS:85185623120
SN - 2052-4439
VL - 11
JO - BMJ Open Respiratory Research
JF - BMJ Open Respiratory Research
IS - 1
M1 - e002061
ER -
