Identifying priorities for balance interventions through a participatory co-design approach with end-users

Abstract Background Most individuals living with spinal cord injuries/diseases (SCI/D) or stroke experience at least one fall each year; hence, the development of interventions and technologies that target balance control is needed. The purpose of this study was to identify and explore the prioritie...

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Main Authors: Natasha L. Benn, Hope Jervis-Rademeyer, Kayla Benson, Katherine Chan, Jae W. Lee, Elizabeth L. Inness, Dalton L. Wolfe, Milad Alizadeh-Meghrazi, Kei Masani, Kristin E. Musselman
Format: Article
Language:English
Published: BMC 2023-07-01
Series:BMC Neurology
Subjects:
Online Access:https://doi.org/10.1186/s12883-023-03312-5
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author Natasha L. Benn
Hope Jervis-Rademeyer
Kayla Benson
Katherine Chan
Jae W. Lee
Elizabeth L. Inness
Dalton L. Wolfe
Milad Alizadeh-Meghrazi
Kei Masani
Kristin E. Musselman
author_facet Natasha L. Benn
Hope Jervis-Rademeyer
Kayla Benson
Katherine Chan
Jae W. Lee
Elizabeth L. Inness
Dalton L. Wolfe
Milad Alizadeh-Meghrazi
Kei Masani
Kristin E. Musselman
author_sort Natasha L. Benn
collection DOAJ
description Abstract Background Most individuals living with spinal cord injuries/diseases (SCI/D) or stroke experience at least one fall each year; hence, the development of interventions and technologies that target balance control is needed. The purpose of this study was to identify and explore the priorities for balance-focused interventions and technologies from the perspectives of end-users to assist with the design of an intervention that combines functional electrical stimulation (FES) with visual feedback training for standing balance. Methods Two individuals with SCI/D, one individual with stroke, two physical therapists (PT) and one hospital administrator were recruited. Participants attended three focus group meetings that followed a participatory co-design approach. A semi-structured interview guide, developed from the FAME (Feasibility, Appropriateness, Meaningfulness, Effectiveness, Economic Evidence) framework, was used to lead the discussion, querying participants’ experiences with balance deficits and interventions, and FES. Meetings were audio-recorded and transcribed verbatim. An iterative and reflexive inductive thematic analysis was applied to the transcripts by three researchers. Results Four themes were identified: (1) Balance is meaningful for daily life and rehabilitation. Participants acknowledged various factors influencing balance control and how balance deficits interfered with participation in activities. End-users stressed the importance of continuing to work on one’s balance after discharge from hospital-based rehabilitation. (2) Desired characteristics of balance interventions. Participants explained that balance interventions should be tailored to an individual’s unique needs and goals, relevant to their lives, balance their safety and risk, and be engaging. (3) Prior experiences with FES to inform future therapeutic use. Participants with stroke or SCI/D described initial apprehension with FES, but experienced numerous benefits that motivated them to continue with FES. Challenges with FES were mentioned, including wires, cost, and time of set up. (4) Potential role of FES in balance interventions. Participants felt that FES would complement balance interventions; however, they had not experienced this combination of therapies previously. Conclusions End-users described how their experiences with balance deficits, rehabilitation, and FES informed their priorities for balance interventions. The findings inform the design and implementation of future balance interventions for individuals with SCI/D or stroke, including an intervention involving FES and visual feedback training.
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spelling doaj.art-bdf18fd8cc234e1db0a43c9230aadf812023-07-16T11:20:11ZengBMCBMC Neurology1471-23772023-07-0123111210.1186/s12883-023-03312-5Identifying priorities for balance interventions through a participatory co-design approach with end-usersNatasha L. Benn0Hope Jervis-Rademeyer1Kayla Benson2Katherine Chan3Jae W. Lee4Elizabeth L. Inness5Dalton L. Wolfe6Milad Alizadeh-Meghrazi7Kei Masani8Kristin E. Musselman9Rehabilitation Sciences Institute, University of TorontoRehabilitation Sciences Institute, University of TorontoKITE Research Institute-Toronto Rehabilitation Institute, University Health NetworkKITE Research Institute-Toronto Rehabilitation Institute, University Health NetworkKITE Research Institute-Toronto Rehabilitation Institute, University Health NetworkRehabilitation Sciences Institute, University of TorontoParkwood Institute, Lawson Health Research InstituteMyant IncKITE Research Institute-Toronto Rehabilitation Institute, University Health NetworkRehabilitation Sciences Institute, University of TorontoAbstract Background Most individuals living with spinal cord injuries/diseases (SCI/D) or stroke experience at least one fall each year; hence, the development of interventions and technologies that target balance control is needed. The purpose of this study was to identify and explore the priorities for balance-focused interventions and technologies from the perspectives of end-users to assist with the design of an intervention that combines functional electrical stimulation (FES) with visual feedback training for standing balance. Methods Two individuals with SCI/D, one individual with stroke, two physical therapists (PT) and one hospital administrator were recruited. Participants attended three focus group meetings that followed a participatory co-design approach. A semi-structured interview guide, developed from the FAME (Feasibility, Appropriateness, Meaningfulness, Effectiveness, Economic Evidence) framework, was used to lead the discussion, querying participants’ experiences with balance deficits and interventions, and FES. Meetings were audio-recorded and transcribed verbatim. An iterative and reflexive inductive thematic analysis was applied to the transcripts by three researchers. Results Four themes were identified: (1) Balance is meaningful for daily life and rehabilitation. Participants acknowledged various factors influencing balance control and how balance deficits interfered with participation in activities. End-users stressed the importance of continuing to work on one’s balance after discharge from hospital-based rehabilitation. (2) Desired characteristics of balance interventions. Participants explained that balance interventions should be tailored to an individual’s unique needs and goals, relevant to their lives, balance their safety and risk, and be engaging. (3) Prior experiences with FES to inform future therapeutic use. Participants with stroke or SCI/D described initial apprehension with FES, but experienced numerous benefits that motivated them to continue with FES. Challenges with FES were mentioned, including wires, cost, and time of set up. (4) Potential role of FES in balance interventions. Participants felt that FES would complement balance interventions; however, they had not experienced this combination of therapies previously. Conclusions End-users described how their experiences with balance deficits, rehabilitation, and FES informed their priorities for balance interventions. The findings inform the design and implementation of future balance interventions for individuals with SCI/D or stroke, including an intervention involving FES and visual feedback training.https://doi.org/10.1186/s12883-023-03312-5Functional electrical stimulationBalance controlRehabilitationStrokeSpinal cord injuryHealthcare professionals
spellingShingle Natasha L. Benn
Hope Jervis-Rademeyer
Kayla Benson
Katherine Chan
Jae W. Lee
Elizabeth L. Inness
Dalton L. Wolfe
Milad Alizadeh-Meghrazi
Kei Masani
Kristin E. Musselman
Identifying priorities for balance interventions through a participatory co-design approach with end-users
BMC Neurology
Functional electrical stimulation
Balance control
Rehabilitation
Stroke
Spinal cord injury
Healthcare professionals
title Identifying priorities for balance interventions through a participatory co-design approach with end-users
title_full Identifying priorities for balance interventions through a participatory co-design approach with end-users
title_fullStr Identifying priorities for balance interventions through a participatory co-design approach with end-users
title_full_unstemmed Identifying priorities for balance interventions through a participatory co-design approach with end-users
title_short Identifying priorities for balance interventions through a participatory co-design approach with end-users
title_sort identifying priorities for balance interventions through a participatory co design approach with end users
topic Functional electrical stimulation
Balance control
Rehabilitation
Stroke
Spinal cord injury
Healthcare professionals
url https://doi.org/10.1186/s12883-023-03312-5
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