{"title":"情境因素对多发性硬化症和步态障碍患者使用移动辅助设备的参与感的影响:定性分析","authors":"Elise-Marie Dilger, Nadja Reeck, Dyon Hoekstra, Annett Thiele, Anna Levke Brütt","doi":"10.1111/hex.70033","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Introduction</h3>\n \n <p>People with multiple sclerosis and gait impairment are particularly susceptible to facing restrictions in their participation. This study aims to investigate (a) which contextual factors within the framework of the International Classification of Functioning, Disability and Health (ICF) are relevant for participation from the perspective of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices, and (b) how these contextual factors shape the subjective facets of participation, including a sense of connection, efficacy and meaning, based on the social identity approach to health and well-being.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>We conducted a qualitative analysis on data gathered from four online focus group interviews, each involving four to six people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices (totalling <i>N</i> = 19), and 12 individual online interviews conducted with participants from the focus group interviews. The analysis followed the qualitative content analysis according to Kuckartz.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>Mobility assistive devices such as walkers, manual wheelchairs and electric wheelchairs/scooters were seen as facilitators that enabled participation in various life situations and enhanced a sense of efficacy by promoting independence. Challenges were encountered in relation to architectural barriers, pathways, weather conditions, public transportation and the lack of integral accessibility to services and systems. Although instrumental support could ease participation, it was also associated with an impaired sense of efficacy. Attitudes, particularly developing an understanding of the experiences of people with multiple sclerosis and gait impairment from others' perspectives, were considered important but often lacking, and discriminatory attitudes were experienced. On the level of personal factors, acceptance of both the mobility assistive devices and the disease itself were seen as facilitators for maintaining involvement in life situations.</p>\n </section>\n \n <section>\n \n <h3> Conclusions</h3>\n \n <p>This study extends the existing literature by shedding light on the interconnectedness of contextual factors within the ICF and various facets of perceived participation, including a sense of connection, efficacy and meaning. These findings provide valuable insights for stakeholders such as urban planners and policymakers in developing inclusive environments that enhance the overall quality of participation for people with multiple sclerosis and gait impairment.</p>\n </section>\n \n <section>\n \n <h3> Patient or Public Contribution</h3>\n \n <p>This study reports on the lived experiences of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices. The research team stood in close exchange with project members of the German Multiple Sclerosis Society Lower Saxony, a group representing the interests of people with multiple sclerosis, to design and conduct the focus group interviews. The results from the focus group interviews were the basis for the design of a participatory future workshop in which people with multiple sclerosis and stakeholders involved in the healthcare process collaboratively developed recommendations for improving the provision of mobility assistive devices.</p>\n </section>\n \n <section>\n \n <h3> Trial Registration</h3>\n \n <p>German Clinical Trials Register number: DRKS00025532.</p>\n </section>\n </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0000,"publicationDate":"2024-09-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11437357/pdf/","citationCount":"0","resultStr":"{\"title\":\"Impact of Contextual Factors on the Perceived Participation of People With Multiple Sclerosis and Gait Impairment Using Mobility Assistive Devices: A Qualitative Analysis\",\"authors\":\"Elise-Marie Dilger, Nadja Reeck, Dyon Hoekstra, Annett Thiele, Anna Levke Brütt\",\"doi\":\"10.1111/hex.70033\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Introduction</h3>\\n \\n <p>People with multiple sclerosis and gait impairment are particularly susceptible to facing restrictions in their participation. This study aims to investigate (a) which contextual factors within the framework of the International Classification of Functioning, Disability and Health (ICF) are relevant for participation from the perspective of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices, and (b) how these contextual factors shape the subjective facets of participation, including a sense of connection, efficacy and meaning, based on the social identity approach to health and well-being.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>We conducted a qualitative analysis on data gathered from four online focus group interviews, each involving four to six people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices (totalling <i>N</i> = 19), and 12 individual online interviews conducted with participants from the focus group interviews. The analysis followed the qualitative content analysis according to Kuckartz.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>Mobility assistive devices such as walkers, manual wheelchairs and electric wheelchairs/scooters were seen as facilitators that enabled participation in various life situations and enhanced a sense of efficacy by promoting independence. Challenges were encountered in relation to architectural barriers, pathways, weather conditions, public transportation and the lack of integral accessibility to services and systems. Although instrumental support could ease participation, it was also associated with an impaired sense of efficacy. Attitudes, particularly developing an understanding of the experiences of people with multiple sclerosis and gait impairment from others' perspectives, were considered important but often lacking, and discriminatory attitudes were experienced. On the level of personal factors, acceptance of both the mobility assistive devices and the disease itself were seen as facilitators for maintaining involvement in life situations.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusions</h3>\\n \\n <p>This study extends the existing literature by shedding light on the interconnectedness of contextual factors within the ICF and various facets of perceived participation, including a sense of connection, efficacy and meaning. These findings provide valuable insights for stakeholders such as urban planners and policymakers in developing inclusive environments that enhance the overall quality of participation for people with multiple sclerosis and gait impairment.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Patient or Public Contribution</h3>\\n \\n <p>This study reports on the lived experiences of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices. The research team stood in close exchange with project members of the German Multiple Sclerosis Society Lower Saxony, a group representing the interests of people with multiple sclerosis, to design and conduct the focus group interviews. The results from the focus group interviews were the basis for the design of a participatory future workshop in which people with multiple sclerosis and stakeholders involved in the healthcare process collaboratively developed recommendations for improving the provision of mobility assistive devices.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Trial Registration</h3>\\n \\n <p>German Clinical Trials Register number: DRKS00025532.</p>\\n </section>\\n </div>\",\"PeriodicalId\":55070,\"journal\":{\"name\":\"Health Expectations\",\"volume\":\"27 5\",\"pages\":\"\"},\"PeriodicalIF\":3.0000,\"publicationDate\":\"2024-09-28\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11437357/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Health Expectations\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1111/hex.70033\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Health Expectations","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/hex.70033","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
Impact of Contextual Factors on the Perceived Participation of People With Multiple Sclerosis and Gait Impairment Using Mobility Assistive Devices: A Qualitative Analysis
Introduction
People with multiple sclerosis and gait impairment are particularly susceptible to facing restrictions in their participation. This study aims to investigate (a) which contextual factors within the framework of the International Classification of Functioning, Disability and Health (ICF) are relevant for participation from the perspective of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices, and (b) how these contextual factors shape the subjective facets of participation, including a sense of connection, efficacy and meaning, based on the social identity approach to health and well-being.
Methods
We conducted a qualitative analysis on data gathered from four online focus group interviews, each involving four to six people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices (totalling N = 19), and 12 individual online interviews conducted with participants from the focus group interviews. The analysis followed the qualitative content analysis according to Kuckartz.
Results
Mobility assistive devices such as walkers, manual wheelchairs and electric wheelchairs/scooters were seen as facilitators that enabled participation in various life situations and enhanced a sense of efficacy by promoting independence. Challenges were encountered in relation to architectural barriers, pathways, weather conditions, public transportation and the lack of integral accessibility to services and systems. Although instrumental support could ease participation, it was also associated with an impaired sense of efficacy. Attitudes, particularly developing an understanding of the experiences of people with multiple sclerosis and gait impairment from others' perspectives, were considered important but often lacking, and discriminatory attitudes were experienced. On the level of personal factors, acceptance of both the mobility assistive devices and the disease itself were seen as facilitators for maintaining involvement in life situations.
Conclusions
This study extends the existing literature by shedding light on the interconnectedness of contextual factors within the ICF and various facets of perceived participation, including a sense of connection, efficacy and meaning. These findings provide valuable insights for stakeholders such as urban planners and policymakers in developing inclusive environments that enhance the overall quality of participation for people with multiple sclerosis and gait impairment.
Patient or Public Contribution
This study reports on the lived experiences of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices. The research team stood in close exchange with project members of the German Multiple Sclerosis Society Lower Saxony, a group representing the interests of people with multiple sclerosis, to design and conduct the focus group interviews. The results from the focus group interviews were the basis for the design of a participatory future workshop in which people with multiple sclerosis and stakeholders involved in the healthcare process collaboratively developed recommendations for improving the provision of mobility assistive devices.
Trial Registration
German Clinical Trials Register number: DRKS00025532.
期刊介绍:
Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including:
• Person-centred care and quality improvement
• Patients'' participation in decisions about disease prevention and management
• Public perceptions of health services
• Citizen involvement in health care policy making and priority-setting
• Methods for monitoring and evaluating participation
• Empowerment and consumerism
• Patients'' role in safety and quality
• Patient and public role in health services research
• Co-production (researchers working with patients and the public) of research, health care and policy
Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.