Stakeholders’ Perspectives, Needs, and Barriers to Self-Management for People With Physical Disabilities Experiencing Chronic Conditions: Focus Group Study
BackgroundWhile self-management programs have had significant improvements for individuals with chronic conditions, less is known about the impact of self-management programs for individuals with physical disabilities who experience chronic conditions, as no holistic self-man...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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JMIR Publications
2023-12-01
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| Series: | JMIR Rehabilitation and Assistive Technologies |
| Online Access: | https://rehab.jmir.org/2023/1/e43309 |
| _version_ | 1797387114166353920 |
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| author | Eric Evans Ayse Zengul Amy Knight Amanda Willig Andrea Cherrington Tapan Mehta Mohanraj Thirumalai |
| author_facet | Eric Evans Ayse Zengul Amy Knight Amanda Willig Andrea Cherrington Tapan Mehta Mohanraj Thirumalai |
| author_sort | Eric Evans |
| collection | DOAJ |
| description |
BackgroundWhile self-management programs have had significant improvements for individuals with chronic conditions, less is known about the impact of self-management programs for individuals with physical disabilities who experience chronic conditions, as no holistic self-management programs exist for this population. Similarly, there is limited knowledge of how other stakeholders, such as caregivers, health experts, and researchers, view self-management programs in the context of disability, chronic health conditions, and assistive technologies.
ObjectiveThis study aimed to obtain insight into how stakeholders perceive self-management relating to physical disability, chronic conditions, and assistive technologies.
MethodsNine focus groups were conducted by 2 trained facilitators using semistructured interview guides. Each guide contained questions relating to stakeholders’ experiences, challenges with self-management programs, and perceptions of assistive technologies. Focus groups were audio recorded and transcribed. Thematic analysis was conducted on the focus group data.
ResultsA total of 47 individuals participated in the focus groups. By using a constructivist grounded approach and inductive data collection, three main themes emerged from the focus groups: (1) perspectives, (2) needs, and (3) barriers of stakeholders. Stakeholders emphasized the importance of physical activity, mental health, symptom management, medication management, participant centeredness, and chronic disease and disability education. Participants viewed technology as a beneficial aide to their daily self-management and expressed their desire to have peer-to-peer support in web-based self-management programs. Additional views of technology included the ability to access individualized, educational content and connect with other individuals who experience similar health conditions or struggle with caregiving duties.
ConclusionsThe findings suggest that the development of any web-based self-management program should include mental health education and resources in addition to physical activity content and symptom management and be cost-effective. Beyond the inclusion of educational resources, stakeholders desired customization or patient centeredness in the program to meet the overall needs of individuals with physical disabilities and caregivers. The development of web-based self-management programs should be holistic in meeting the needs of all stakeholders.
Trial RegistrationClinicalTrials.gov NCT05481593; https://clinicaltrials.gov/study/NCT05481593 |
| first_indexed | 2024-03-08T22:19:13Z |
| format | Article |
| id | doaj.art-546b221f25694d678c9fe75d7a957e9d |
| institution | Directory Open Access Journal |
| issn | 2369-2529 |
| language | English |
| last_indexed | 2024-03-08T22:19:13Z |
| publishDate | 2023-12-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Rehabilitation and Assistive Technologies |
| spelling | doaj.art-546b221f25694d678c9fe75d7a957e9d2023-12-18T14:15:39ZengJMIR PublicationsJMIR Rehabilitation and Assistive Technologies2369-25292023-12-0110e4330910.2196/43309Stakeholders’ Perspectives, Needs, and Barriers to Self-Management for People With Physical Disabilities Experiencing Chronic Conditions: Focus Group StudyEric Evanshttps://orcid.org/0000-0003-3751-0269Ayse Zengulhttps://orcid.org/0000-0002-2820-7076Amy Knighthttps://orcid.org/0000-0002-5069-1845Amanda Willighttps://orcid.org/0000-0001-8802-4311Andrea Cherringtonhttps://orcid.org/0000-0002-8321-3567Tapan Mehtahttps://orcid.org/0000-0002-2016-2344Mohanraj Thirumalaihttps://orcid.org/0000-0001-9768-3829 BackgroundWhile self-management programs have had significant improvements for individuals with chronic conditions, less is known about the impact of self-management programs for individuals with physical disabilities who experience chronic conditions, as no holistic self-management programs exist for this population. Similarly, there is limited knowledge of how other stakeholders, such as caregivers, health experts, and researchers, view self-management programs in the context of disability, chronic health conditions, and assistive technologies. ObjectiveThis study aimed to obtain insight into how stakeholders perceive self-management relating to physical disability, chronic conditions, and assistive technologies. MethodsNine focus groups were conducted by 2 trained facilitators using semistructured interview guides. Each guide contained questions relating to stakeholders’ experiences, challenges with self-management programs, and perceptions of assistive technologies. Focus groups were audio recorded and transcribed. Thematic analysis was conducted on the focus group data. ResultsA total of 47 individuals participated in the focus groups. By using a constructivist grounded approach and inductive data collection, three main themes emerged from the focus groups: (1) perspectives, (2) needs, and (3) barriers of stakeholders. Stakeholders emphasized the importance of physical activity, mental health, symptom management, medication management, participant centeredness, and chronic disease and disability education. Participants viewed technology as a beneficial aide to their daily self-management and expressed their desire to have peer-to-peer support in web-based self-management programs. Additional views of technology included the ability to access individualized, educational content and connect with other individuals who experience similar health conditions or struggle with caregiving duties. ConclusionsThe findings suggest that the development of any web-based self-management program should include mental health education and resources in addition to physical activity content and symptom management and be cost-effective. Beyond the inclusion of educational resources, stakeholders desired customization or patient centeredness in the program to meet the overall needs of individuals with physical disabilities and caregivers. The development of web-based self-management programs should be holistic in meeting the needs of all stakeholders. Trial RegistrationClinicalTrials.gov NCT05481593; https://clinicaltrials.gov/study/NCT05481593https://rehab.jmir.org/2023/1/e43309 |
| spellingShingle | Eric Evans Ayse Zengul Amy Knight Amanda Willig Andrea Cherrington Tapan Mehta Mohanraj Thirumalai Stakeholders’ Perspectives, Needs, and Barriers to Self-Management for People With Physical Disabilities Experiencing Chronic Conditions: Focus Group Study JMIR Rehabilitation and Assistive Technologies |
| title | Stakeholders’ Perspectives, Needs, and Barriers to Self-Management for People With Physical Disabilities Experiencing Chronic Conditions: Focus Group Study |
| title_full | Stakeholders’ Perspectives, Needs, and Barriers to Self-Management for People With Physical Disabilities Experiencing Chronic Conditions: Focus Group Study |
| title_fullStr | Stakeholders’ Perspectives, Needs, and Barriers to Self-Management for People With Physical Disabilities Experiencing Chronic Conditions: Focus Group Study |
| title_full_unstemmed | Stakeholders’ Perspectives, Needs, and Barriers to Self-Management for People With Physical Disabilities Experiencing Chronic Conditions: Focus Group Study |
| title_short | Stakeholders’ Perspectives, Needs, and Barriers to Self-Management for People With Physical Disabilities Experiencing Chronic Conditions: Focus Group Study |
| title_sort | stakeholders perspectives needs and barriers to self management for people with physical disabilities experiencing chronic conditions focus group study |
| url | https://rehab.jmir.org/2023/1/e43309 |
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