{"title":"对影响新诊断为多发性硬化症患者的诊断经历和自我管理方法的社会生态影响因素的定性研究。","authors":"Olivia Wills, Sarah Manche, Yasmine Probst","doi":"10.1111/hex.70091","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Background</h3>\n \n <p>People newly diagnosed with multiple sclerosis (MS) often pursue ‘health-related’ behaviour changes to feel in control of their diagnosis. However, little is known about the specific factors that may influence behaviour change during this crucial time. Therefore, we conducted an in-depth exploration of the socioecological influences impacting the diagnostic experience and self-management practices following an MS diagnosis.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>We followed a qualitative study design using a phenomenological approach to explore the lived experiences of people newly diagnosed with MS. Analysis was conducted via an iterative process, starting with deductive open coding to map onto the socioecological model, followed by inductive focused coding to extract key themes from participants' reported experiences.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>Eight participants diagnosed with MS within the past 12 months were interviewed. Four themes were reported across the MS journey, reflecting the different levels of the socioecological model: (1) taking control of a new diagnosis to retain a sense of personal identity—individual level; (2) grief and acceptance guided by community—social connection, community and social environment; (3) practical management of MS in the wider society—policy and government regulation; and (4) global events that greatly upheave the MS journey—natural disasters and societal conflicts, such as a pandemic. These themes highlighted the complex interrelationship between socioecological factors and self-management abilities in people living with MS.</p>\n </section>\n \n <section>\n \n <h3> Conclusions</h3>\n \n <p>The diagnostic experience of those with MS is highly complex. Although it varies for each person living with MS, there are shared experiences that often reflect a common cycle of grief. An MS diagnosis provides an opportunity for self-rediscovery, which can both influence and be influenced by socioecological factors. The social and technical nature of self-managing MS strongly shapes the diagnostic experience, underpinning many aspects of daily living, social interaction and physical and psychological well-being.</p>\n </section>\n \n <section>\n \n <h3> Patient or Public Contribution</h3>\n \n <p>The research team worked closely with an MS-specific consumer panel for the study design. This project was raised with this group, and preliminary results were shared at a national conference for MS during a lived-experience consumer stream to gain additional insights.</p>\n </section>\n </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0000,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11540932/pdf/","citationCount":"0","resultStr":"{\"title\":\"A Qualitative Exploration of the Socioecological Influences Shaping the Diagnostic Experience and Self-Management Practices Among People Newly Diagnosed With Multiple Sclerosis\",\"authors\":\"Olivia Wills, Sarah Manche, Yasmine Probst\",\"doi\":\"10.1111/hex.70091\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Background</h3>\\n \\n <p>People newly diagnosed with multiple sclerosis (MS) often pursue ‘health-related’ behaviour changes to feel in control of their diagnosis. However, little is known about the specific factors that may influence behaviour change during this crucial time. Therefore, we conducted an in-depth exploration of the socioecological influences impacting the diagnostic experience and self-management practices following an MS diagnosis.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>We followed a qualitative study design using a phenomenological approach to explore the lived experiences of people newly diagnosed with MS. Analysis was conducted via an iterative process, starting with deductive open coding to map onto the socioecological model, followed by inductive focused coding to extract key themes from participants' reported experiences.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>Eight participants diagnosed with MS within the past 12 months were interviewed. Four themes were reported across the MS journey, reflecting the different levels of the socioecological model: (1) taking control of a new diagnosis to retain a sense of personal identity—individual level; (2) grief and acceptance guided by community—social connection, community and social environment; (3) practical management of MS in the wider society—policy and government regulation; and (4) global events that greatly upheave the MS journey—natural disasters and societal conflicts, such as a pandemic. These themes highlighted the complex interrelationship between socioecological factors and self-management abilities in people living with MS.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusions</h3>\\n \\n <p>The diagnostic experience of those with MS is highly complex. Although it varies for each person living with MS, there are shared experiences that often reflect a common cycle of grief. An MS diagnosis provides an opportunity for self-rediscovery, which can both influence and be influenced by socioecological factors. The social and technical nature of self-managing MS strongly shapes the diagnostic experience, underpinning many aspects of daily living, social interaction and physical and psychological well-being.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Patient or Public Contribution</h3>\\n \\n <p>The research team worked closely with an MS-specific consumer panel for the study design. This project was raised with this group, and preliminary results were shared at a national conference for MS during a lived-experience consumer stream to gain additional insights.</p>\\n </section>\\n </div>\",\"PeriodicalId\":55070,\"journal\":{\"name\":\"Health Expectations\",\"volume\":\"27 6\",\"pages\":\"\"},\"PeriodicalIF\":3.0000,\"publicationDate\":\"2024-11-06\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11540932/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Health Expectations\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1111/hex.70091\",\"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.70091","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}
A Qualitative Exploration of the Socioecological Influences Shaping the Diagnostic Experience and Self-Management Practices Among People Newly Diagnosed With Multiple Sclerosis
Background
People newly diagnosed with multiple sclerosis (MS) often pursue ‘health-related’ behaviour changes to feel in control of their diagnosis. However, little is known about the specific factors that may influence behaviour change during this crucial time. Therefore, we conducted an in-depth exploration of the socioecological influences impacting the diagnostic experience and self-management practices following an MS diagnosis.
Methods
We followed a qualitative study design using a phenomenological approach to explore the lived experiences of people newly diagnosed with MS. Analysis was conducted via an iterative process, starting with deductive open coding to map onto the socioecological model, followed by inductive focused coding to extract key themes from participants' reported experiences.
Results
Eight participants diagnosed with MS within the past 12 months were interviewed. Four themes were reported across the MS journey, reflecting the different levels of the socioecological model: (1) taking control of a new diagnosis to retain a sense of personal identity—individual level; (2) grief and acceptance guided by community—social connection, community and social environment; (3) practical management of MS in the wider society—policy and government regulation; and (4) global events that greatly upheave the MS journey—natural disasters and societal conflicts, such as a pandemic. These themes highlighted the complex interrelationship between socioecological factors and self-management abilities in people living with MS.
Conclusions
The diagnostic experience of those with MS is highly complex. Although it varies for each person living with MS, there are shared experiences that often reflect a common cycle of grief. An MS diagnosis provides an opportunity for self-rediscovery, which can both influence and be influenced by socioecological factors. The social and technical nature of self-managing MS strongly shapes the diagnostic experience, underpinning many aspects of daily living, social interaction and physical and psychological well-being.
Patient or Public Contribution
The research team worked closely with an MS-specific consumer panel for the study design. This project was raised with this group, and preliminary results were shared at a national conference for MS during a lived-experience consumer stream to gain additional insights.
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.