Background: The SARS-Cov-2 (COVID-19) pandemic affected the delivery of health and social care services globally. However, little is known about how palliative care social work services were impacted. Aim: The aim of this study was to... more
Background: The SARS-Cov-2 (COVID-19) pandemic affected the delivery of health and social care services globally. However, little is known about how palliative care social work services were impacted. Aim: The aim of this study was to capture and analyse data from palliative care social workers who provided professional support in a range of settings across 21 countries during the COVID-19 pandemic. Design: A cross-sectional survey-based design was used for this empirical study and this paper primarily focuses on the quantitative responses. Setting/participants: Participants, palliative care social workers, were drawn internationally via members of the EAPC Social Work Task Force and the World Hospice Palliative Care Social Work network. Results: We received 362 survey responses from 21 countries. Most (79%) respondents worked with adults in in-patient units or hospitals. The number of referrals during COVID-19 increased more in non-European countries, compared to European countries...
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This is a prospective, observational and analytic study developed in oncologic disease with the objective to value the importance of detecting social necessities, in palliative patients and his or her families. Material and method: A... more
This is a prospective, observational and analytic study developed in oncologic disease with the objective to value the importance of detecting social necessities, in palliative patients and his or her families. Material and method: A directive interview was used, based on social indicators applied to 200 consecutive patients and his caregivers, at the Palliative Care Service of the Portuguese Oncology Institute of Porto, E.P.E. Results: With ages between 23 and 92 years old, the majority of the sample it was residing in Porto and 45.5% were presenting an elevated degree of dependence. The study detected socials indicators of risk in 173 patients: 34.8% «with out social support», 21.7% «Lives alone with a old familiar», 11.6% «Without social and economic support»), and the principal indicator of risk was detected by the social worker (65% of the cases). Conclusion: Many of palliative patients (87.2%) presented social risk indicators, that justify an anticipated intervention plan. Thi...
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Introduction: The message of palliative care can be promoted using creative thinking and gamification. It can be an innovative strategy to promote changes in behaviour, promote thinking, and work on skills such as empathy. Aim: Design,... more
Introduction: The message of palliative care can be promoted using creative thinking and gamification. It can be an innovative strategy to promote changes in behaviour, promote thinking, and work on skills such as empathy. Aim: Design, test and evaluate a gamified social intervention to enhance palliative care awareness. Methods: Participatory action research study with mixed methods, Design Thinking and using the Public Engagement strategy. Forty-three undergraduate students participated in a Palliative CareStay Room and completed the Test of Cognitive and Affective Empathy (TECA) before and after the game. At the end of the game, a ten-minute debriefing was held with the participants and an open-ended questionnaire was handed out. The content analysis was done independently and the sum of the scores of each dimension was compared before and after the activity. Findings: Older participants (N=43: female=23; male=20; x̄ 19.6 years old) presented higher values in perspective adoption...
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Introduction: Palliative care continues to be misunderstood within the world of healthcare. Palliative care professionals are key agents for promoting a greater understanding of their field. This study aims to examine the messages, both... more
Introduction: Palliative care continues to be misunderstood within the world of healthcare. Palliative care professionals are key agents for promoting a greater understanding of their field. This study aims to examine the messages, both implicit and explicit, that palliative care professionals transmit about themselves and their work within their teams and to other health professionals. Methods: Focused ethnographic secondary analysis, exploring the interactions of palliative care professionals as it happens at everyday work. An inductive thematic analysis was developed from 242 h of observation of the daily work practices of palliative care professionals, focusing on their interactions with others. The data was coded without predefined categories, and the analysis was performed independently by two researchers. Results: Palliative professionals communicate that they are part of an active team working in an organized manner. They value and feel proud of their work. Despite the inten...
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Appendix C Potentially Relevant but Excluded Studies. (DOCX 12 kb)
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Appendix A Full search strategy â Medicine search strategy. (DOCX 14 kb)
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Background Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings... more
Background Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as “places of death” as opposed to “places of life” meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC. Methods A qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently con...
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The inter-rater/test-retest reliability and construct validity of a palliative care needs assessment tool in interstitial lung disease (NAT:PD-ILD) were tested using NAT:PD-ILD-guided video-recorded consultations, and NAT:PD-ILD-guided... more
The inter-rater/test-retest reliability and construct validity of a palliative care needs assessment tool in interstitial lung disease (NAT:PD-ILD) were tested using NAT:PD-ILD-guided video-recorded consultations, and NAT:PD-ILD-guided consultations, and patient and carer-report outcomes (St George's Respiratory Questionnaire (SGRQ)-ILD, Carer Strain Index (CSI)/Carer Support Needs Assessment Tool (CSNAT)). 11/16 items reached at least fair inter-rater agreement; 5 items reached at least moderate test-retest agreement. 4/6 patient constructs demonstrated agreement with SGRQ-I scores (Kendall's tau-b, 0.24-20.36; P<0.05). 4/7 carer constructs agreed with the CSI/CSNAT items (kappa, 0.23-20.53). The NAT:PD-ILD is reliable and valid. Clinical effectiveness and implementation are to be evaluated.
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Variables of well-being and exhaustion are generally related to family caregivers in palliative care (PC). Few studies which focus specifically on interventions aimed at their treatment – a practical preventive interventions to enhance... more
Variables of well-being and exhaustion are generally related to family caregivers in palliative care (PC). Few studies which focus specifically on interventions aimed at their treatment – a practical preventive interventions to enhance the internal/external resources of the patients and families. To create a program named Self-care Practice Ability Program (SPA Program) to increase the well-being and reduce exhaustion of the caregivers by combining skills training and complementary therapies. The SPA Program had 3 six-hour modules (Practical; Emotional; and Relational), unfolded in 4 steps, in a period of 3 months: 1 – the participants (*P) signed the informed consent and filled out a scale to identify the module to be addressed by the team; 2 – *P filled out the Zarit scale and the Personal Wellbeing Index; 3 – *P responded a satisfaction questionnaire; 4 – Repetition of step 1 and 2. Criteria: oncologic PC caregivers; ≥ 18 years; verbal and writing comprehension of Portuguese lang...
Aim: To analyse the literature about educational programs aimed towards empowering caregivers of patients in palliative care (PC) attending to the conceptual difference between programs and psychosocial interventions. Method: Review of... more
Aim: To analyse the literature about educational programs aimed towards empowering caregivers of patients in palliative care (PC) attending to the conceptual difference between programs and psychosocial interventions. Method: Review of the literature published in English, Portuguese and Spanish languages between 01/2009 and 12/2013, supported by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines; PubMed, Scopus and SciELO were searched for studies about caregiver training programs developed in the PC field. 43 Palliative Care Associations listed in the European Association of Palliative Care (EAPC) PC ATLAS were contacted in order to complement this literature review. Results: Eight studies were identified and analysed concerning subject matter, measurement instruments, location, results, strategy and duration of the programs. All educational programs addressed issues related to the context of end of life; Program duration ranged from three we...
de dados foi realizada nos meses de Janeiro e Fevereiro de 2012. O presente estudo pretende indagar a validade facial e a validade de conteúdo da Escala de Capacidade para Cuidar em Paliativos (ECCP), criada pelos investigadores, assente... more
de dados foi realizada nos meses de Janeiro e Fevereiro de 2012. O presente estudo pretende indagar a validade facial e a validade de conteúdo da Escala de Capacidade para Cuidar em Paliativos (ECCP), criada pelos investigadores, assente nos indicadores de capacidade de cuidar em doentes oncológicos paliativos (ICCDOP) apresentados por Reigada et al. (2010). 2º -Constituição da Amostra 3º -Aplicar o Instrumento 4º -Analisar os resultados 1º -Criar o Instrumento Eixo da Prática Eixo Relacional Eixo da Experiência Interna Eixo do Estado de Saúde G1 -10 experts para a 1ª e 2ª fase da investigação: 4 médicos, 5 enfermeiros e 1 psicólogo G2 -10 familiares cuidadores 1. O pré-teste foi discutido no grupo de experts (Cognitive Debriefing) 2. O pré-teste foi enviado para o grupo de experts via e-mail: cada item foi avaliado de 1 a 5 quanto à objectividade (O) e clareza (C). Foi permitido comentários (1ªfase) 3. Depois de reformulado o pré-teste foi novamente enviado aos participantes (15 di...
caregivers, family, role. Caring for someone in a palliative stage is effortlessly understood as a moral duty and family members are the privileged group for this function 1,2 . Considering that family caregivers ensure the continuity of... more
caregivers, family, role. Caring for someone in a palliative stage is effortlessly understood as a moral duty and family members are the privileged group for this function 1,2 . Considering that family caregivers ensure the continuity of patient care at home, Palliative Care (PC) teams should understand the role and tasks of their performance and must be prepared to identify and help them to work out their needs, as well as educate them in activities of care and self-care 3,4 . Aim: to analyze the activities and roles undertaken by family caregivers of patients in PC literature. Study Design: A systematic search of the literature published between January 2009 to December 2013. Electronic databases were searched in PubMed, PsycINFO, Scopus and SciELO using the EndNote X7 and Excel software's. Combinations of terms (Palliative care [title]) OR Hospice [Title]) OR End-of-life [Title]) AND Caregivers [Title]) OR family [Title]) AND scroll [Title / Abstract]). Articles only written ...