Natalie St Clair-Sullivan, Jaime H Vera, Matthew Maddocks, Richard Harding, Thomas Levett, Jonathan Roberts, Zoe Adler, Stephen Bremner, Gary Pargeter, Katherine Bristowe
{"title":"我们很脆弱,但我们很坚强\":关于艾滋病毒感染者和体弱者的观点、经历和优先成果的定性研究。","authors":"Natalie St Clair-Sullivan, Jaime H Vera, Matthew Maddocks, Richard Harding, Thomas Levett, Jonathan Roberts, Zoe Adler, Stephen Bremner, Gary Pargeter, Katherine Bristowe","doi":"10.1111/hiv.13722","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>Advances in antiretroviral therapy have meant that the focus of HIV care has shifted to chronic disease management. The HIV population is ageing, and the prevalence of frailty is increasing. This study aimed to explore the perspectives and experiences of the impact of living with HIV and frailty and priority outcomes in relation to wellbeing and ageing.</p><p><strong>Methods: </strong>In-depth qualitative interviews were undertaken with older people living with HIV who screened positive for frailty using the FRAIL scale. Participants were recruited from a UK outpatient HIV clinic. Interviews were analysed using reflexive thematic analysis.</p><p><strong>Results: </strong>In total, 24 people living with HIV were interviewed. Frailty was described as not being able to do the things you could and living with limitations that impacted physical, psychological and social wellbeing. Being identified as frail was not always surprising, but acceptance of this diagnosis required an understanding of what frailty means and what they can do to address it. For people living with HIV, the word 'frail' was largely acceptable when its clinical meaning was explained. However, participants questioned whether a different term is needed if this is a new 'HIV-associated frailty'. Priority outcomes were slowing the progression of frailty, retaining independence and being treated holistically.</p><p><strong>Conclusion: </strong>When talking about frailty with people living with HIV, professionals need to balance honesty and sensitivity and provide clear information about the meaning and impact for the person. Holistic management plans must recognize the physical and psycho-social impact of frailty and prioritize slowing its progression and reducing its impact on independence.</p>","PeriodicalId":13176,"journal":{"name":"HIV Medicine","volume":null,"pages":null},"PeriodicalIF":2.8000,"publicationDate":"2024-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"'We are fragile, but we are strong': A qualitative study of perspectives, experiences and priority outcomes for people living with HIV and frailty.\",\"authors\":\"Natalie St Clair-Sullivan, Jaime H Vera, Matthew Maddocks, Richard Harding, Thomas Levett, Jonathan Roberts, Zoe Adler, Stephen Bremner, Gary Pargeter, Katherine Bristowe\",\"doi\":\"10.1111/hiv.13722\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objectives: </strong>Advances in antiretroviral therapy have meant that the focus of HIV care has shifted to chronic disease management. The HIV population is ageing, and the prevalence of frailty is increasing. This study aimed to explore the perspectives and experiences of the impact of living with HIV and frailty and priority outcomes in relation to wellbeing and ageing.</p><p><strong>Methods: </strong>In-depth qualitative interviews were undertaken with older people living with HIV who screened positive for frailty using the FRAIL scale. Participants were recruited from a UK outpatient HIV clinic. Interviews were analysed using reflexive thematic analysis.</p><p><strong>Results: </strong>In total, 24 people living with HIV were interviewed. Frailty was described as not being able to do the things you could and living with limitations that impacted physical, psychological and social wellbeing. Being identified as frail was not always surprising, but acceptance of this diagnosis required an understanding of what frailty means and what they can do to address it. For people living with HIV, the word 'frail' was largely acceptable when its clinical meaning was explained. However, participants questioned whether a different term is needed if this is a new 'HIV-associated frailty'. Priority outcomes were slowing the progression of frailty, retaining independence and being treated holistically.</p><p><strong>Conclusion: </strong>When talking about frailty with people living with HIV, professionals need to balance honesty and sensitivity and provide clear information about the meaning and impact for the person. Holistic management plans must recognize the physical and psycho-social impact of frailty and prioritize slowing its progression and reducing its impact on independence.</p>\",\"PeriodicalId\":13176,\"journal\":{\"name\":\"HIV Medicine\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.8000,\"publicationDate\":\"2024-10-13\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"HIV Medicine\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1111/hiv.13722\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"INFECTIOUS DISEASES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"HIV Medicine","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1111/hiv.13722","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"INFECTIOUS DISEASES","Score":null,"Total":0}
'We are fragile, but we are strong': A qualitative study of perspectives, experiences and priority outcomes for people living with HIV and frailty.
Objectives: Advances in antiretroviral therapy have meant that the focus of HIV care has shifted to chronic disease management. The HIV population is ageing, and the prevalence of frailty is increasing. This study aimed to explore the perspectives and experiences of the impact of living with HIV and frailty and priority outcomes in relation to wellbeing and ageing.
Methods: In-depth qualitative interviews were undertaken with older people living with HIV who screened positive for frailty using the FRAIL scale. Participants were recruited from a UK outpatient HIV clinic. Interviews were analysed using reflexive thematic analysis.
Results: In total, 24 people living with HIV were interviewed. Frailty was described as not being able to do the things you could and living with limitations that impacted physical, psychological and social wellbeing. Being identified as frail was not always surprising, but acceptance of this diagnosis required an understanding of what frailty means and what they can do to address it. For people living with HIV, the word 'frail' was largely acceptable when its clinical meaning was explained. However, participants questioned whether a different term is needed if this is a new 'HIV-associated frailty'. Priority outcomes were slowing the progression of frailty, retaining independence and being treated holistically.
Conclusion: When talking about frailty with people living with HIV, professionals need to balance honesty and sensitivity and provide clear information about the meaning and impact for the person. Holistic management plans must recognize the physical and psycho-social impact of frailty and prioritize slowing its progression and reducing its impact on independence.
期刊介绍:
HIV Medicine aims to provide an alternative outlet for publication of international research papers in the field of HIV Medicine, embracing clinical, pharmocological, epidemiological, ethical, preclinical and in vitro studies. In addition, the journal will commission reviews and other feature articles. It will focus on evidence-based medicine as the mainstay of successful management of HIV and AIDS. The journal is specifically aimed at researchers and clinicians with responsibility for treating HIV seropositive patients.