Shared care planning in people with cognitive disorders and dementia: a survey among patients and caregivers in Italy.

IF 3 1区 哲学 Q1 ETHICS BMC Medical Ethics Pub Date : 2024-12-20 DOI:10.1186/s12910-024-01150-9
Corinna Porteri, Giulia Ienco, Edda Mariaelisa Turla, Mariassunta Piccinni, Patrizio Pasqualetti
{"title":"Shared care planning in people with cognitive disorders and dementia: a survey among patients and caregivers in Italy.","authors":"Corinna Porteri, Giulia Ienco, Edda Mariaelisa Turla, Mariassunta Piccinni, Patrizio Pasqualetti","doi":"10.1186/s12910-024-01150-9","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>There is wide convergence in the positions of scientific societies, patient associations and public bodies regarding the advisability of advance care planning (ACP) in cognitive disorders and dementia to respect the specificity of the person. Nevertheless, planning in advance for dementia represents a unique challenge. In Italy, law n. 219/2017 introduced ACP for the first time at the regulatory level, under the name of shared care planning (SCP). Few surveys on the law implementation have been conducted in Italy, but none have specifically involved patients with cognitive disorders and their caregivers. To contribute filling the gap, we conducted a survey among patients and caregivers attending a memory clinic to investigate what their knowledge, attitudes and experiences were regarding SCP.</p><p><strong>Methods: </strong>We developed two semi-structured questionnaires for patients and caregivers organized into the following sections: (i) knowledge of the law; (ii) general attitude on SCP; (iii) experience about SCP; (iv) attitude about realizing a SCP; (v) advance directives. Participation in the survey was offered to consecutive patients discharged from the memory clinic during 26 target weeks and to their caregivers. The interviews were conducted on the occasion of the last scheduled visit to the facility; telephone interview was also provided. Information was collected by means of an online platform (Google Forms). Descriptive and basic inferential analysis was performed by means of SPSS (IBM). The analysis of the open-ended questions was also conducted with the support of the Voyant Tools.</p><p><strong>Results: </strong>Sixty-six patient and 65 caregiver interviews were collected. No participant reported that a doctor has ever talked to the patient about SCP. The large majority of patients (85%) and almost all caregivers (95%) agree/absolutely agree with the opportunity for patients to realize SCP. Almost all participants agree/absolutely agree with the usefulness for the patients of indicating a trusted person to act on their behalf (91% patients and 95% caregivers). Forty-three (65%) patients and 48 (74%) caregivers believe it would be good to start SCP with the patient when the time is right. Among them, 20 caregivers and 12 patients believe it is already time to talk about SCP.</p><p><strong>Conclusions: </strong>Study results showed patients' and caregivers' interest in the SCP process and, at the same time, their mixed attitude when SCP is referred specifically to themselves or their loved ones. This indicates the need to introduce the discourse on SCP into clinical practice while remaining very sensitive to the individual patient's pace and wishes, including his/her possible refusal to talk about SCP.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"145"},"PeriodicalIF":3.0000,"publicationDate":"2024-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11660457/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"BMC Medical Ethics","FirstCategoryId":"98","ListUrlMain":"https://doi.org/10.1186/s12910-024-01150-9","RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"ETHICS","Score":null,"Total":0}
引用次数: 0

Abstract

Background: There is wide convergence in the positions of scientific societies, patient associations and public bodies regarding the advisability of advance care planning (ACP) in cognitive disorders and dementia to respect the specificity of the person. Nevertheless, planning in advance for dementia represents a unique challenge. In Italy, law n. 219/2017 introduced ACP for the first time at the regulatory level, under the name of shared care planning (SCP). Few surveys on the law implementation have been conducted in Italy, but none have specifically involved patients with cognitive disorders and their caregivers. To contribute filling the gap, we conducted a survey among patients and caregivers attending a memory clinic to investigate what their knowledge, attitudes and experiences were regarding SCP.

Methods: We developed two semi-structured questionnaires for patients and caregivers organized into the following sections: (i) knowledge of the law; (ii) general attitude on SCP; (iii) experience about SCP; (iv) attitude about realizing a SCP; (v) advance directives. Participation in the survey was offered to consecutive patients discharged from the memory clinic during 26 target weeks and to their caregivers. The interviews were conducted on the occasion of the last scheduled visit to the facility; telephone interview was also provided. Information was collected by means of an online platform (Google Forms). Descriptive and basic inferential analysis was performed by means of SPSS (IBM). The analysis of the open-ended questions was also conducted with the support of the Voyant Tools.

Results: Sixty-six patient and 65 caregiver interviews were collected. No participant reported that a doctor has ever talked to the patient about SCP. The large majority of patients (85%) and almost all caregivers (95%) agree/absolutely agree with the opportunity for patients to realize SCP. Almost all participants agree/absolutely agree with the usefulness for the patients of indicating a trusted person to act on their behalf (91% patients and 95% caregivers). Forty-three (65%) patients and 48 (74%) caregivers believe it would be good to start SCP with the patient when the time is right. Among them, 20 caregivers and 12 patients believe it is already time to talk about SCP.

Conclusions: Study results showed patients' and caregivers' interest in the SCP process and, at the same time, their mixed attitude when SCP is referred specifically to themselves or their loved ones. This indicates the need to introduce the discourse on SCP into clinical practice while remaining very sensitive to the individual patient's pace and wishes, including his/her possible refusal to talk about SCP.

查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
认知障碍和痴呆症患者的共享护理计划:意大利患者和护理人员的一项调查。
背景:科学学会、患者协会和公共机构对于提前护理计划(ACP)在认知障碍和痴呆中是否可取,尊重患者的特殊性的立场广泛趋同。然而,提前规划痴呆症是一项独特的挑战。在意大利,第219/2017号法律首次在监管层面以共享护理计划(SCP)的名义引入了ACP。意大利很少对法律实施情况进行调查,但没有一项调查专门涉及认知障碍患者及其护理人员。为了填补这一空白,我们对参加记忆诊所的患者和护理人员进行了一项调查,调查他们对SCP的知识、态度和经历。方法:我们为患者和护理人员开发了两份半结构化问卷,分为以下部分:(i)法律知识;(ii)对SCP的一般态度;(iii) SCP经验;(iv)对SCP实现的态度;(v)预先指示。在26个目标周内连续从记忆诊所出院的病人和他们的护理人员都可以参与这项调查。采访是在最后一次预定访问该设施的时候进行的;还提供了电话采访。信息是通过在线平台(谷歌表格)收集的。采用SPSS (IBM)软件进行描述性分析和基本推理分析。对开放式问题的分析也在Voyant工具的支持下进行。结果:收集了66名患者和65名护理人员的访谈。没有参与者报告说医生曾与患者谈论过SCP。绝大多数患者(85%)和几乎所有护理人员(95%)同意/绝对同意患者有机会实现SCP。几乎所有的参与者(91%的患者和95%的护理人员)都同意/绝对同意指定一个值得信赖的人代表他们行事对患者是有用的。43名(65%)患者和48名(74%)护理人员认为,在合适的时间与患者一起开始SCP是件好事。其中,20名护理人员和12名患者认为已经到了谈论SCP的时候了。结论:研究结果显示患者和照顾者对SCP过程的兴趣,同时,当SCP被专门提及自己或其亲人时,他们的态度不一。这表明需要将关于SCP的论述引入临床实践,同时对个体患者的节奏和愿望保持高度敏感,包括他/她可能拒绝谈论SCP。
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 去求助
来源期刊
BMC Medical Ethics
BMC Medical Ethics MEDICAL ETHICS-
CiteScore
5.20
自引率
7.40%
发文量
108
审稿时长
>12 weeks
期刊介绍: BMC Medical Ethics is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies.
期刊最新文献
Aesthetic dentistry and ethics: a systematic review of marketing practices and overtreatment in cosmetic dental procedures. Shared decision-making between patients and healthcare providers at rural health facilities in Eastern Uganda: an exploratory qualitative study. Ethical issues raised in the care of the elderly during the SARS-CoV-2 pandemic and possible solutions for the future: a systematic review of qualitative scientific literature. Lay views in Southern France of the acceptability of refusing to provide treatment because of alleged futility. Students' attitudes toward euthanasia and abortion: a cross-cultural study in three Mediterranean countries.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1