‘All I Do Is Sit in a Chair Until the Pain Fades’—Experiences of Living With Gout

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2025-05-21 DOI:10.1111/hex.70302

Helene Sedelius, Renée Flacking, Mats Dehlin, Anna Svärd, Malin Tistad

{"title":"‘All I Do Is Sit in a Chair Until the Pain Fades’—Experiences of Living With Gout","authors":"Helene Sedelius, Renée Flacking, Mats Dehlin, Anna Svärd, Malin Tistad","doi":"10.1111/hex.70302","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Background</h3>\n \n <p>Living with gout impacts most dimensions of life. However, there is a lack of studies exploring the trajectory of patients' experiences of living with and being treated for gout, beyond the experiences during a flare. This study aimed to explore how individuals with gout experience the disease, its effects on daily life and their encounters with healthcare.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>A constructivist grounded theory was used, involving simultaneous data collection and analysis. Semi-structured individual interviews were conducted with 12 individuals living with gout and aged between 40 and 87 in Central Sweden.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>Navigating the uncertainty of living with gout was represented through two categories: ‘a mismatch between individuals' needs and the provision of care’ and ‘a process of adaptation’. The mismatch involved unmet needs for pain relief, feeling dismissed as having a minor condition and a lack of personalised care. The adaptation process included seeking explanations, developing self-management strategies and adjusting to pain and functional limitations.</p>\n </section>\n \n <section>\n \n <h3> Conclusions</h3>\n \n <p>Living with gout entails a significant degree of uncertainty. The process of adaptation is affected by a mismatch between individuals' needs and the care provided, in addition to the disease's ‘roller coaster’ nature and its slow progression.</p>\n </section>\n \n <section>\n \n <h3> Patient and Public Contribution</h3>\n \n <p>This study is part of a research project aimed at gathering knowledge essential for developing an intervention in primary care. A patient, appointed by the Swedish Rheumatism Association, is actively participating in the project's research group. The results of this study have been discussed and analysed within the research group, including input from the patient participant.</p>\n </section>\n </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0000,"publicationDate":"2025-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70302","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Health Expectations","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/hex.70302","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}

引用次数: 0

Abstract

Background

Living with gout impacts most dimensions of life. However, there is a lack of studies exploring the trajectory of patients' experiences of living with and being treated for gout, beyond the experiences during a flare. This study aimed to explore how individuals with gout experience the disease, its effects on daily life and their encounters with healthcare.

Methods

A constructivist grounded theory was used, involving simultaneous data collection and analysis. Semi-structured individual interviews were conducted with 12 individuals living with gout and aged between 40 and 87 in Central Sweden.

Results

Navigating the uncertainty of living with gout was represented through two categories: ‘a mismatch between individuals' needs and the provision of care’ and ‘a process of adaptation’. The mismatch involved unmet needs for pain relief, feeling dismissed as having a minor condition and a lack of personalised care. The adaptation process included seeking explanations, developing self-management strategies and adjusting to pain and functional limitations.

Conclusions

Living with gout entails a significant degree of uncertainty. The process of adaptation is affected by a mismatch between individuals' needs and the care provided, in addition to the disease's ‘roller coaster’ nature and its slow progression.

Patient and Public Contribution

This study is part of a research project aimed at gathering knowledge essential for developing an intervention in primary care. A patient, appointed by the Swedish Rheumatism Association, is actively participating in the project's research group. The results of this study have been discussed and analysed within the research group, including input from the patient participant.

查看原文本刊更多论文

“我所做的就是坐在椅子上，直到疼痛消失”——痛风患者的生活经历

痛风对生活的大多数方面都有影响。然而，除了发作期间的经历外，缺乏探索患者与痛风一起生活和接受治疗的经历轨迹的研究。本研究旨在探讨痛风患者如何经历这种疾病，其对日常生活的影响以及他们与医疗保健的接触。方法采用建构主义扎根理论，同时收集和分析数据。对瑞典中部年龄在40岁至87岁之间的12名痛风患者进行了半结构化的个人访谈。结果：痛风患者生活的不确定性表现为两类：“个人需求与护理提供之间的不匹配”和“适应过程”。这种不匹配包括对缓解疼痛的需求未得到满足，感觉自己得了小病而被忽视，以及缺乏个性化护理。适应过程包括寻求解释、制定自我管理策略、适应疼痛和功能限制。结论：痛风患者的生活具有很大程度的不确定性。除了这种疾病的“过山车”性质及其缓慢进展之外，个人需求与所提供的护理之间的不匹配也会影响适应过程。本研究是一项研究项目的一部分，旨在收集发展初级保健干预措施所必需的知识。由瑞典风湿病协会指定的一名患者正在积极参与该项目的研究小组。本研究的结果已在研究小组内进行了讨论和分析，包括患者参与者的意见。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

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.