Dataset Information

Advanced directives' knowledge among Portuguese palliative patients and caregivers: do the sociodemographic factors influence it? A cross-sectional survey.

ABSTRACT:

Background

The influence of demographic factors on the completion and knowledge of the Portuguese Advance Directives (PAD) and the Health Care Proxy's (HCP) role is still not clear.

Objectives

To identify sociodemographic features associated with knowledge and adherence to PAD and HCP in palliative care.

Design

Cross-Sectional analysis of the sociodemographic data, PAD and HCP role knowledge, and PAD Register from a group of Portuguese palliative patients and their caregivers enrolled on the DAVPAL trial to test the PAD efficacy in promoting better concordance between patients and caregivers.

Participants

One hundred twenty participants (60 palliative patients and 60 caregivers).

Methods

After enrollment, the participants' sociodemographic data was acquired, their knowledge of PAD and the role of an HCP was questioned, and their prior register of the PAD was asked.

Results

60 patients and 60 caregivers were included (n=120), with differences among them regarding age (p<.001), gender (p=.003), education (p<.001), job (p<.001), marital status (p=.043), and access to the internet (p=.003), but not regarding religion (p=.21). Only 13.3% of the participants were aware of PAD, 15.0% were aware of the HCP role, and 5.0% had previously filled a PAD. Religious beliefs (Non-Catholic) were the only sociodemographic factor significantly related to these three topics.

Conclusions

There is low awareness of PAD and the HCP's role in palliative care, and there is higher knowledge on these topics among non-Catholic individuals. End-of-life decisions seem to be influenced by similarities in religious beliefs between patients and HCP. Improving education is necessary, namely in palliative care.

Trial registration

ClinicalTrials.gov ID NCT05090072 . Retrospectively registered on 22/10/2021.

SUBMITTER: Martins CS

PROVIDER: S-EPMC10315046 | biostudies-literature | 2023 Jul

REPOSITORIES: biostudies-literature

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Publications

Advanced directives' knowledge among Portuguese palliative patients and caregivers: do the sociodemographic factors influence it? A cross-sectional survey.

Martins Catarina Sampaio CS Nunes Rui R

BMC palliative care 20230701 1

<h4>Background</h4>The influence of demographic factors on the completion and knowledge of the Portuguese Advance Directives (PAD) and the Health Care Proxy's (HCP) role is still not clear.<h4>Objectives</h4>To identify sociodemographic features associated with knowledge and adherence to PAD and HCP in palliative care.<h4>Design</h4>Cross-Sectional analysis of the sociodemographic data, PAD and HCP role knowledge, and PAD Register from a group of Portuguese palliative patients and their caregive ...[more]

PMID: 37393243

Similar Datasets

Project description:BackgroundAdvance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people's attitudes towards ADs.MethodsAn online cross-sectional analytical study was conducted using a convenience sample. For this purpose, a request (email) that publicized the link to a -form-which included sociodemographic data and the General Public Attitudes Toward Advance Care Directives (GPATACD) scale-was sent to 28 higher education institutions and 30 senior universities, covering all of mainland Portugal and the islands (Azores and Madeira). The data were collected between January and February 2023.ResultsA total of 950 adults from completed the online form. The lower scores (mean 1 and 2) obtained in most responses by applying the GPATACD scale show that the sample of the Portuguese population has a very positive attitude towards ADs. The data showed that women, agnostics/atheists, health professionals and those who had already made a living will had more positive attitudes (p < 0.001) towards ADs. There were no statistically significant differences in the attitudes of the Portuguese population sample towards ADs in relation to marital status, education level, and residence.ConclusionThe results obtained enable us to confirm that this sample of the Portuguese population has a positive attitude towards ADs. We verify that there are certain fringes of this sample with certain sociodemographic characteristics (women, agnostics/atheists, health professionals and those who had already made a living will) that have a more positive attitude towards ADs. This data could facilitate the implementation and adjustment of relevant measures, particularly in the field of health education and aimed at groups with less favourable attitudes, to increase the effectiveness of voluntary exercise of citizens' autonomy in end-of-life care planning.

Project description:BackgroundRespiratory medicine (RM) and palliative care (PC) physicians' management of chronic breathlessness in advanced chronic obstructive pulmonary disease (COPD), fibrotic interstitial lung disease (fILD) and lung cancer (LC), and the influence of practice guidelines was explored via an online survey.MethodsA voluntary, online survey was distributed to RM and PC physicians via society newsletter mailing lists.Results450 evaluable questionnaires (348 (77%) RM and 102 (23%) PC) were analysed. Significantly more PC physicians indicated routine use (often/always) of opioids across conditions (COPD: 92% vs. 39%, fILD: 83% vs. 36%, LC: 95% vs. 76%; all p < 0.001) and significantly more PC physicians indicated routine use of benzodiazepines for COPD (33% vs. 10%) and fILD (25% vs. 12%) (both p < 0.001). Significantly more RM physicians reported routine use of a breathlessness score (62% vs. 13%, p < 0.001) and prioritised exercise training/rehabilitation for COPD (49% vs. 7%) and fILD (30% vs. 18%) (both p < 0.001). Overall, 40% of all respondents reported reading non-cancer palliative care guidelines (either carefully or looked at them briefly). Respondents who reported reading these guidelines were more likely to: routinely use a breathlessness score (χ2 = 13.8; p < 0.001), use opioids (χ2 = 12.58, p < 0.001) and refer to pulmonary rehabilitation (χ2 = 6.41, p = 0.011) in COPD; use antidepressants (χ2 = 6.25; p = 0.044) and refer to PC (χ2 = 5.83; p = 0.016) in fILD; and use a handheld fan in COPD (χ2 = 8.75, p = 0.003), fILD (χ2 = 4.85, p = 0.028) and LC (χ2 = 5.63; p = 0.018).ConclusionsThese findings suggest a need for improved dissemination and uptake of jointly developed breathlessness management guidelines in order to encourage appropriate use of existing, evidence-based therapies. The lack of opioid use by RM, and continued benzodiazepine use in PC, suggest that a wider range of acceptable therapies need to be developed and trialled.

Dataset Information

Advanced directives' knowledge among Portuguese palliative patients and caregivers: do the sociodemographic factors influence it? A cross-sectional survey.

Background

Objectives

Design

Participants

Methods

Results

Conclusions

Trial registration

Publications

Advanced directives' knowledge among Portuguese palliative patients and caregivers: do the sociodemographic factors influence it? A cross-sectional survey.

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