Remote pulmonary rehabilitation for interstitial lung disease: developing the model using experience-based codesign
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 an...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2024-07-01
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| Series: | BMJ Open Respiratory Research |
| Online Access: | https://bmjopenrespres.bmj.com/content/11/1/e002061.full |
| _version_ | 1827174689362935808 |
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| author | Lisa Jane Brighton William D-C Man Jennifer Harvey Claire M Nolan Nannette Spain Jose Gonzalez-Nieto Karen A Ingram |
| author_facet | Lisa Jane Brighton William D-C Man Jennifer Harvey Claire M Nolan Nannette Spain Jose Gonzalez-Nieto Karen A Ingram |
| author_sort | Lisa Jane Brighton |
| collection | DOAJ |
| description | 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 programme for people with ILD was codesigned by service-users, their carers/families and multidisciplinary healthcare professionals. Future research should explore the feasibility and acceptability of this intervention. |
| first_indexed | 2024-03-07T23:25:45Z |
| format | Article |
| id | doaj.art-7825c3b7a8a3440f8f3f778f63b3bea4 |
| institution | Directory Open Access Journal |
| issn | 2052-4439 |
| language | English |
| last_indexed | 2025-03-21T03:59:32Z |
| publishDate | 2024-07-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open Respiratory Research |
| spelling | doaj.art-7825c3b7a8a3440f8f3f778f63b3bea42024-07-29T18:05:10ZengBMJ Publishing GroupBMJ Open Respiratory Research2052-44392024-07-0111110.1136/bmjresp-2023-002061Remote pulmonary rehabilitation for interstitial lung disease: developing the model using experience-based codesignLisa Jane Brighton0William D-C Man1Jennifer Harvey2Claire M Nolan3Nannette Spain4Jose Gonzalez-Nieto5Karen A Ingram6Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King`s College London, London, UK1 National Heart and Lung Institute, Imperial College London, London, UKHarefield Pulmonary Rehabilitation Unit, Guy`s and St Thomas` Hospitals NHS Trust, London, UKHarefield Respiratory Research Group, Guy`s and St Thomas` Hospitals NHS Trust, London, UKCREATE-ILD Patient and Public Involvement Group, Guy`s and St Thomas` NHS Foundation Trust, London, UKCREATE-ILD Patient and Public Involvement Group, Guy`s and St Thomas` NHS Foundation Trust, London, UKHarefield Pulmonary Rehabilitation Unit, Guy`s and St Thomas` Hospitals NHS Trust, London, UKBackground 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 programme for people with ILD was codesigned by service-users, their carers/families and multidisciplinary healthcare professionals. Future research should explore the feasibility and acceptability of this intervention.https://bmjopenrespres.bmj.com/content/11/1/e002061.full |
| spellingShingle | Lisa Jane Brighton William D-C Man Jennifer Harvey Claire M Nolan Nannette Spain Jose Gonzalez-Nieto Karen A Ingram Remote pulmonary rehabilitation for interstitial lung disease: developing the model using experience-based codesign BMJ Open Respiratory Research |
| title | Remote pulmonary rehabilitation for interstitial lung disease: developing the model using experience-based codesign |
| title_full | Remote pulmonary rehabilitation for interstitial lung disease: developing the model using experience-based codesign |
| title_fullStr | Remote pulmonary rehabilitation for interstitial lung disease: developing the model using experience-based codesign |
| title_full_unstemmed | Remote pulmonary rehabilitation for interstitial lung disease: developing the model using experience-based codesign |
| title_short | Remote pulmonary rehabilitation for interstitial lung disease: developing the model using experience-based codesign |
| title_sort | remote pulmonary rehabilitation for interstitial lung disease developing the model using experience based codesign |
| url | https://bmjopenrespres.bmj.com/content/11/1/e002061.full |
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