Contributions
Abstract: EP1685
Type: Poster Sessions
Abstract Category: Therapy - Symptomatic treatment
Introduction: People with severe multiple sclerosis (MS) often find it difficult to stand independently, spending most of their day sitting down. Disabling complications resulting from immobility can be minimised if physical activity is increased.
Aims and objectives: The aim was to explore the impact of engaging in a self-managed, home-based standing programme, from the perspective of people with severe MS and their carers.
Methods: This qualitative study was embedded within a multi-centred randomised controlled trial (RCT) evaluating the clinical and cost effectiveness of a home-based standing programme. We explored the experiences of 12 people with progressive MS (six female, aged 35 - 71 years) and eight carers (four female), who used an audio diary to record their thoughts and feelings about using a standing frame over 36 weeks. Recordings were transcribed verbatim and data analysed thematically. Data was triangulated with informal exit interviews from 126 persons participating in the RCT.
Results: Four themes emerged: (1) 'Feeling like the old me' encompasses the sense of normality gained from standing, and the physical, psychological and social benefits experienced; (2) 'Noticing a difference' captures the variety of changes people reported in their function as well as wide ranging symptoms such as spasms, strength, bladder and bowel function; (3) “I want to do it right” reflects the value placed on having guidance and support in establishing a standing programme that worked for them; (4) “You have a good day, you have a bad day” highlights the issues faced by people living with a progressive and fluctuating condition in implementing a self-management programme.
Conclusions: The use of a standing frame enabled people to incorporate regular standing within their lives, which was an activity many had not achieved for some time. In addition to the objective physical benefits demonstrated from the RCT, the qualitative data highlighted wide ranging physical, psychological and social benefits. It underlined the importance of providing people with support and guidance in sustaining this over the longer term.
Disclosure: This study was funded by the NIHR RfPB programme (project number PB-PG-1013-32047). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
Disclosures: None of the authors have anything to disclose.
Abstract: EP1685
Type: Poster Sessions
Abstract Category: Therapy - Symptomatic treatment
Introduction: People with severe multiple sclerosis (MS) often find it difficult to stand independently, spending most of their day sitting down. Disabling complications resulting from immobility can be minimised if physical activity is increased.
Aims and objectives: The aim was to explore the impact of engaging in a self-managed, home-based standing programme, from the perspective of people with severe MS and their carers.
Methods: This qualitative study was embedded within a multi-centred randomised controlled trial (RCT) evaluating the clinical and cost effectiveness of a home-based standing programme. We explored the experiences of 12 people with progressive MS (six female, aged 35 - 71 years) and eight carers (four female), who used an audio diary to record their thoughts and feelings about using a standing frame over 36 weeks. Recordings were transcribed verbatim and data analysed thematically. Data was triangulated with informal exit interviews from 126 persons participating in the RCT.
Results: Four themes emerged: (1) 'Feeling like the old me' encompasses the sense of normality gained from standing, and the physical, psychological and social benefits experienced; (2) 'Noticing a difference' captures the variety of changes people reported in their function as well as wide ranging symptoms such as spasms, strength, bladder and bowel function; (3) “I want to do it right” reflects the value placed on having guidance and support in establishing a standing programme that worked for them; (4) “You have a good day, you have a bad day” highlights the issues faced by people living with a progressive and fluctuating condition in implementing a self-management programme.
Conclusions: The use of a standing frame enabled people to incorporate regular standing within their lives, which was an activity many had not achieved for some time. In addition to the objective physical benefits demonstrated from the RCT, the qualitative data highlighted wide ranging physical, psychological and social benefits. It underlined the importance of providing people with support and guidance in sustaining this over the longer term.
Disclosure: This study was funded by the NIHR RfPB programme (project number PB-PG-1013-32047). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
Disclosures: None of the authors have anything to disclose.