Ways Ahead: developing a supported self-management programme for people living with low- and intermediate-grade gliomas - a protocol for a multi-method study
Introduction Living with and beyond a diagnosis of a low- and intermediate-grade glioma (LIGG) can adversely impact many aspects of people’s lives and their quality of life (QoL). In people with chronic conditions, self-management can improve QoL. This is especially true if people are supported to s...
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| Format: | Article |
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BMJ Publishing Group
2020-07-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/10/7/e041465.full |
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| author | Joanne Lewis Vera Araujo-Soares Pamela Gallagher Sophie Williams Tracy Finch Ben Rimmer Lizzie Dutton Richéal Burns |
| author_facet | Joanne Lewis Vera Araujo-Soares Pamela Gallagher Sophie Williams Tracy Finch Ben Rimmer Lizzie Dutton Richéal Burns |
| author_sort | Joanne Lewis |
| collection | DOAJ |
| description | Introduction Living with and beyond a diagnosis of a low- and intermediate-grade glioma (LIGG) can adversely impact many aspects of people’s lives and their quality of life (QoL). In people with chronic conditions, self-management can improve QoL. This is especially true if people are supported to self-manage. Supported self-management programmes have been developed for several cancers, but the unique challenges experienced by LIGG survivors mean these programmes may not be readily transferable to this group. The Ways Ahead study aims to address this gap by exploring the needs of LIGG survivors to develop a prototype for a supported self-management programme tailored to this group.Methods and analysis Ways Ahead will follow three sequential phases, underpinned by a systematic review of self-management interventions in cancer. In phase 1, qualitative methods will be used to explore and understand the issues faced by LIGG survivors, as well as the barriers and facilitators to self-management. Three sets of interviews will be conducted with LIGG survivors, their informal carers and professionals. Thematic analysis will be conducted with reference to the Theoretical Domains Framework and Normalisation Process Theory. Phase 2 will involve co-production workshops to generate ideas for the design of a supported self-management programme. Workshop outputs will be translated into a design specification for a prototype programme. Finally, phase 3 will involve a health economic assessment to examine the feasibility and benefits of incorporating the proposed programme into the current survivorship care pathway. This prototype will then be ready for testing in a subsequent trial.Ethics and dissemination The study has been reviewed and approved by an National Health Service Research Ethics Committee (REC ref: 20/WA/0118). The findings will be disseminated through peer-reviewed journals, conference presentations, broadcast media, the study website, The Brain Tumour Charity and stakeholder engagement activities. |
| format | Article |
| id | doaj-art-f32c3370d14646208e6a265b3e21ff33 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2020-07-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-f32c3370d14646208e6a265b3e21ff332024-12-04T17:40:10ZengBMJ Publishing GroupBMJ Open2044-60552020-07-0110710.1136/bmjopen-2020-041465Ways Ahead: developing a supported self-management programme for people living with low- and intermediate-grade gliomas - a protocol for a multi-method studyJoanne Lewis0Vera Araujo-Soares1Pamela Gallagher2Sophie Williams3Tracy Finch4Ben Rimmer5Lizzie Dutton6Richéal Burns7Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK1 Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UKSchool of Psychology, Dublin City University, Dublin, IrelandNewcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK1 Nursing, Midwifery and Health, Faculty of Health and Life Sciences, Northumbria University, Newcastle-upon-Tyne, UKPopulation Health Sciences Institute, Newcastle University Centre for Cancer, Newcastle University, Newcastle upon Tyne, UKPopulation Health Sciences Institute, Newcastle University Centre for Cancer, Newcastle University, Newcastle upon Tyne, UKInstitute of Technology Sligo, Sligo, IrelandIntroduction Living with and beyond a diagnosis of a low- and intermediate-grade glioma (LIGG) can adversely impact many aspects of people’s lives and their quality of life (QoL). In people with chronic conditions, self-management can improve QoL. This is especially true if people are supported to self-manage. Supported self-management programmes have been developed for several cancers, but the unique challenges experienced by LIGG survivors mean these programmes may not be readily transferable to this group. The Ways Ahead study aims to address this gap by exploring the needs of LIGG survivors to develop a prototype for a supported self-management programme tailored to this group.Methods and analysis Ways Ahead will follow three sequential phases, underpinned by a systematic review of self-management interventions in cancer. In phase 1, qualitative methods will be used to explore and understand the issues faced by LIGG survivors, as well as the barriers and facilitators to self-management. Three sets of interviews will be conducted with LIGG survivors, their informal carers and professionals. Thematic analysis will be conducted with reference to the Theoretical Domains Framework and Normalisation Process Theory. Phase 2 will involve co-production workshops to generate ideas for the design of a supported self-management programme. Workshop outputs will be translated into a design specification for a prototype programme. Finally, phase 3 will involve a health economic assessment to examine the feasibility and benefits of incorporating the proposed programme into the current survivorship care pathway. This prototype will then be ready for testing in a subsequent trial.Ethics and dissemination The study has been reviewed and approved by an National Health Service Research Ethics Committee (REC ref: 20/WA/0118). The findings will be disseminated through peer-reviewed journals, conference presentations, broadcast media, the study website, The Brain Tumour Charity and stakeholder engagement activities.https://bmjopen.bmj.com/content/10/7/e041465.full |
| spellingShingle | Joanne Lewis Vera Araujo-Soares Pamela Gallagher Sophie Williams Tracy Finch Ben Rimmer Lizzie Dutton Richéal Burns Ways Ahead: developing a supported self-management programme for people living with low- and intermediate-grade gliomas - a protocol for a multi-method study BMJ Open |
| title | Ways Ahead: developing a supported self-management programme for people living with low- and intermediate-grade gliomas - a protocol for a multi-method study |
| title_full | Ways Ahead: developing a supported self-management programme for people living with low- and intermediate-grade gliomas - a protocol for a multi-method study |
| title_fullStr | Ways Ahead: developing a supported self-management programme for people living with low- and intermediate-grade gliomas - a protocol for a multi-method study |
| title_full_unstemmed | Ways Ahead: developing a supported self-management programme for people living with low- and intermediate-grade gliomas - a protocol for a multi-method study |
| title_short | Ways Ahead: developing a supported self-management programme for people living with low- and intermediate-grade gliomas - a protocol for a multi-method study |
| title_sort | ways ahead developing a supported self management programme for people living with low and intermediate grade gliomas a protocol for a multi method study |
| url | https://bmjopen.bmj.com/content/10/7/e041465.full |
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