Bita Sadeghi, F. Estebsari, A. Ebadi, M. Rassouli, Elahe Sadeghi
{"title":"伊朗多发性硬化症患者家庭照顾者的社会支持需求:一项定性研究","authors":"Bita Sadeghi, F. Estebsari, A. Ebadi, M. Rassouli, Elahe Sadeghi","doi":"10.32598/rj.23.1.3330.1","DOIUrl":null,"url":null,"abstract":"Aim: Multiple sclerosis (MS) is one of the most common chronic progressive neurological diseases and is regarded as the non-traumatic cause of neurological disability in youth. The Multiple sclerosis patients need for family caregiver increasingly grows due to the progressive course of the disease, which worsens the symptoms over time. Family caregivers of this group of patients are subject to various challenges and needs in the area of patient care. Therefore, the present study was conducted to explain the social supportive needs of family caregivers of Multiple sclerosis patients. Methods and materials: This qualitative study was conducted in MS Society of Isfahan, Iran, through a conventional content analysis approach in 2019-2020. The participants were selected using a purposeful sampling method. The data was gathered using semi-structured interviews about care-related social supportive needs of Multiple sclerosis patient. After obtaining informed consent, interviews were conducted with 8 patients, 13 family caregivers, and 4 medical staff for approximately 30 to 60 minutes at the place agreed upon by the participants. All interviews were recorded using a recorder. After the interviews were reviewed several times, they were simultaneously transcripted, coded, and analyzed. Finally, Graneheim and Lundman (2004) conventional content analysis approach was used to analyze the data. Results: Findings of this study with regard to social supportive needs of family caregivers of multiple sclerosis patients were classified into 4 main categories, including \"providing interaction opportunities to reduce isolation\", \"empathetic interaction with peers and treatment team members\", \"financial aids and attracting support from charities\", and \"family support\", and 14 subcategories. conclusion: Findings of this study showed that among fundamental needs of these caregivers to be considered by health providers are providing interaction opportunities to reduce isolation, empathetic interaction with peers and treatment team members, financial aids and attracting support from charities, and support from family. Findings also showed that most of the family caregivers of multiple sclerosis patients do not receive adequate social and systemic support from health care providers and do not have access to support resources. In addition to providing access to proper support and social and systemic resources, the policy makers, health care providers, and nurses can, according to the findings of the present study, provide the required support programs to prepare these caregivers to play a more desirable role in caring for their patients, especially at home environment.","PeriodicalId":46374,"journal":{"name":"JOURNAL OF REHABILITATION","volume":null,"pages":null},"PeriodicalIF":0.0000,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"1","resultStr":"{\"title\":\"Social Support Needs of Iranian Family Caregivers of Multiple Sclerosis Patients: A Qualitative Study\",\"authors\":\"Bita Sadeghi, F. Estebsari, A. Ebadi, M. Rassouli, Elahe Sadeghi\",\"doi\":\"10.32598/rj.23.1.3330.1\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Aim: Multiple sclerosis (MS) is one of the most common chronic progressive neurological diseases and is regarded as the non-traumatic cause of neurological disability in youth. The Multiple sclerosis patients need for family caregiver increasingly grows due to the progressive course of the disease, which worsens the symptoms over time. Family caregivers of this group of patients are subject to various challenges and needs in the area of patient care. Therefore, the present study was conducted to explain the social supportive needs of family caregivers of Multiple sclerosis patients. Methods and materials: This qualitative study was conducted in MS Society of Isfahan, Iran, through a conventional content analysis approach in 2019-2020. The participants were selected using a purposeful sampling method. The data was gathered using semi-structured interviews about care-related social supportive needs of Multiple sclerosis patient. After obtaining informed consent, interviews were conducted with 8 patients, 13 family caregivers, and 4 medical staff for approximately 30 to 60 minutes at the place agreed upon by the participants. All interviews were recorded using a recorder. After the interviews were reviewed several times, they were simultaneously transcripted, coded, and analyzed. Finally, Graneheim and Lundman (2004) conventional content analysis approach was used to analyze the data. Results: Findings of this study with regard to social supportive needs of family caregivers of multiple sclerosis patients were classified into 4 main categories, including \\\"providing interaction opportunities to reduce isolation\\\", \\\"empathetic interaction with peers and treatment team members\\\", \\\"financial aids and attracting support from charities\\\", and \\\"family support\\\", and 14 subcategories. conclusion: Findings of this study showed that among fundamental needs of these caregivers to be considered by health providers are providing interaction opportunities to reduce isolation, empathetic interaction with peers and treatment team members, financial aids and attracting support from charities, and support from family. Findings also showed that most of the family caregivers of multiple sclerosis patients do not receive adequate social and systemic support from health care providers and do not have access to support resources. In addition to providing access to proper support and social and systemic resources, the policy makers, health care providers, and nurses can, according to the findings of the present study, provide the required support programs to prepare these caregivers to play a more desirable role in caring for their patients, especially at home environment.\",\"PeriodicalId\":46374,\"journal\":{\"name\":\"JOURNAL OF REHABILITATION\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2022-04-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"1\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"JOURNAL OF REHABILITATION\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.32598/rj.23.1.3330.1\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"Medicine\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"JOURNAL OF REHABILITATION","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.32598/rj.23.1.3330.1","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"Medicine","Score":null,"Total":0}
引用次数: 1
摘要
目的:多发性硬化症(MS)是最常见的慢性进行性神经系统疾病之一,被认为是青少年神经系统残疾的非创伤性原因。多发性硬化症患者需要的家庭照顾越来越多,由于疾病的进展过程,随着时间的推移,恶化的症状。这组患者的家庭照顾者在患者护理领域面临各种挑战和需求。因此,本研究旨在解释多发性硬化症患者家庭照顾者的社会支持需求。方法与材料:本定性研究于2019-2020年在伊朗伊斯法罕MS Society进行,采用常规含量分析方法。参与者是通过有目的的抽样方法选择的。数据采用半结构化访谈法收集多发性硬化症患者护理相关社会支持需求。在获得知情同意后,在参与者同意的地点与8名患者、13名家庭护理人员和4名医务人员进行了约30至60分钟的访谈。所有的访谈都用录音机记录下来。在对访谈进行多次回顾之后,同时对其进行转录、编码和分析。最后,采用Graneheim and Lundman(2004)传统的内容分析法对数据进行分析。结果:本研究将多发性硬化症患者家庭照顾者的社会支持需求分为“提供互动机会以减少孤立”、“与同伴和治疗团队成员的共情互动”、“经济援助和吸引慈善机构的支持”和“家庭支持”4大类,共14个小类。结论:本研究结果表明,卫生服务提供者应考虑的基本需求包括提供互动机会以减少孤立,与同伴和治疗团队成员进行移情互动,经济援助和吸引慈善机构的支持,以及家庭的支持。研究结果还表明,大多数多发性硬化症患者的家庭照顾者没有从卫生保健提供者那里得到足够的社会和系统支持,也没有获得支持资源的途径。根据本研究的发现,除了提供适当的支持以及社会和系统资源之外,政策制定者、卫生保健提供者和护士还可以提供所需的支持计划,使这些护理人员在照顾病人方面发挥更理想的作用,特别是在家庭环境中。
Social Support Needs of Iranian Family Caregivers of Multiple Sclerosis Patients: A Qualitative Study
Aim: Multiple sclerosis (MS) is one of the most common chronic progressive neurological diseases and is regarded as the non-traumatic cause of neurological disability in youth. The Multiple sclerosis patients need for family caregiver increasingly grows due to the progressive course of the disease, which worsens the symptoms over time. Family caregivers of this group of patients are subject to various challenges and needs in the area of patient care. Therefore, the present study was conducted to explain the social supportive needs of family caregivers of Multiple sclerosis patients. Methods and materials: This qualitative study was conducted in MS Society of Isfahan, Iran, through a conventional content analysis approach in 2019-2020. The participants were selected using a purposeful sampling method. The data was gathered using semi-structured interviews about care-related social supportive needs of Multiple sclerosis patient. After obtaining informed consent, interviews were conducted with 8 patients, 13 family caregivers, and 4 medical staff for approximately 30 to 60 minutes at the place agreed upon by the participants. All interviews were recorded using a recorder. After the interviews were reviewed several times, they were simultaneously transcripted, coded, and analyzed. Finally, Graneheim and Lundman (2004) conventional content analysis approach was used to analyze the data. Results: Findings of this study with regard to social supportive needs of family caregivers of multiple sclerosis patients were classified into 4 main categories, including "providing interaction opportunities to reduce isolation", "empathetic interaction with peers and treatment team members", "financial aids and attracting support from charities", and "family support", and 14 subcategories. conclusion: Findings of this study showed that among fundamental needs of these caregivers to be considered by health providers are providing interaction opportunities to reduce isolation, empathetic interaction with peers and treatment team members, financial aids and attracting support from charities, and support from family. Findings also showed that most of the family caregivers of multiple sclerosis patients do not receive adequate social and systemic support from health care providers and do not have access to support resources. In addition to providing access to proper support and social and systemic resources, the policy makers, health care providers, and nurses can, according to the findings of the present study, provide the required support programs to prepare these caregivers to play a more desirable role in caring for their patients, especially at home environment.