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1.
Ann Palliat Med ; 13(1): 31-41, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38073298

RESUMO

BACKGROUND: Among the methods that promote quality of life and care, discussing and remembering end-of-life (EOL) wishes for future care may contribute to decision-making about care and the promotion of a good death. Our aim was to investigate the most significant EOL desires among Brazilian cancer patients receiving palliative care (PC). METHODS: This was an exploratory, descriptive, and qualitative study conducted in a Palliative Care Oncology Unit. Fifteen patients played the Go Wish card game (GWCG), choosing and categorizing cards into themes as very important, more or less important, and not important at all. The ten most important cards were discussed, and categories were defined for each card. Cards with the highest frequencies of choice were described. Patients were also asked, "What did playing the cards mean to you?". All data were analyzed using Bardin's content analysis and generated a word cloud to interpret the participants' narratives. RESULTS: Out of the 36 cards, card 19, "I want my family and friends close to me", was the most frequently chosen. Out of the 15 patients studied, only one reported that they initially did not enjoy playing the cards. In this study, the GWCG was effective in fulfilling 90% of the patients' wishes, and this was only possible with the support of the researchers, members of the multi-professional team, and patients' families. CONCLUSIONS: The use of the GWCG in the oncology PC setting made an important contribution to open discussions about patients' values and preferences, as well as being an easy-to-use, understandable, and flexible tool. Prioritizing the fulfillment of patients' wishes was one of the main strengths of this study. Our study suggests working with these wishes as a framework for person-centered care.


Assuntos
Cuidados Paliativos , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Qualidade de Vida , Oncologia , Morte
2.
Artigo em Inglês | MEDLINE | ID: mdl-37402541

RESUMO

OBJECTIVES: To evaluate the preferred place-of-death (PPoD) among patients with advanced cancer over time, and the concordance between preferred and actual place-of-death. METHODS: Prospective cohort study. A total of 190 patients with advanced cancer and their caregivers (n=190) were interviewed every 3 months, from study enrolment to 12 months (M0, M1, M2, M3, M4). PPoD data were obtained under four different end-of-life scenarios: (1) severe clinical deterioration without further specification; (2) clinical deterioration suffering from severe symptoms; (3) clinical deterioration receiving home-based visits; and (4) clinical deterioration receiving home-based visits and suffering from severe symptoms. RESULTS: Home was the most common PPoD over time among patients in scenarios 1 (n=121, 63.7%; n=77, 68.8%; n=39, 57.4%; n=30, 62.5%; n=23, 60.5%) and 3 (n=147, 77.4%; n=87, 77.7%; n=48, 70.6%; n=36, 75.0%; n=30, 78.9%). PPoD in palliative care unit (PCU) and hospital were most frequent at baseline in scenario 2 (n=79, 41.6%; n=78, 41.1%), followed by hospital over time (n=61, 54.5%; n=45, 66.2%; n=35, 72.9%; n=28, 73.7%). During the curse of illness, 6.3% of patients change their PPoD in at least one of end-of-life scenario. About 49.7%, 30.6% and 19.7% of patients died in PCU, hospital and home, respectively. Living in rural area (OR=4.21), poor health self-perception (OR=4.49) and pain at the last days of life (OR=2.77) were associated with death in PPoD. The overall agreement between last preference and actual place-of-death was 51.0% (k=0.252). CONCLUSION: Home death was not the preferred place for a large number of patients when this option was presented within a clinical context scenario. The PPoD and actual place-of-death were depending on the clinical situation.

3.
Palliat Support Care ; 21(5): 856-862, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37052333

RESUMO

OBJECTIVES: Dignity therapy (DT) was developed to help patients at their end of life to reframe and give meaning to their illness process. The DT question protocol focuses on personhood and important aspects of the individual's life. This study aimed to translate and culturally adapt the Dignity Therapy Question Protocol (DTQP) to Brazilian Portuguese. METHODS: This was a descriptive and methodological study, and cross-cultural adaptation process comprised 4 stages: (1) translation and synthesis of English original version protocol into Brazilian Portuguese, (2) back translation, (3) experts committee, and (4) pretest. RESULTS: The Portuguese version of the DTQP - Protocolo de Perguntas sobre Terapia da Dignidade - demonstrated a content validity index of 1 for all equivalences. The initial sample consisted of 41 participants (9 [21.9%] refused to participate and 1 [2.43%] dropped out). The pretest was applied to 30 (73.1%) participants, 15 of them were female and the mean age was 53.4 years. The final version consisted of 10 questions that were approved by the original authors who affirmed that the DTQP Brazilian Portuguese version maintained the original English characteristics. SIGNIFICANCE OF RESULTS: The Brazilian cultural adaptation of the DTQP was well understood by patients. It will be very useful in palliative care clinical practice for patients nearing end of life. The adapted version to Brazilian Portuguese will facilitate future studies using the DTQP.


Assuntos
Comparação Transcultural , Respeito , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Brasil , Inquéritos e Questionários , Traduções , Morte , Reprodutibilidade dos Testes
4.
J Palliat Care ; 38(1): 41-51, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36168276

RESUMO

Objective(s): To develop a questionnaire that assesses the level of comprehension and decision-making capacity of patients with breast cancer about palliative care and advance care planning. Methods: Questionnaire items were based on the scientific literature. Delphi Consensus, a three-round survey with experts (n = 14), evaluated the relevance, clarity, and redundancies of the items. A pretest with breast cancer patients (n = 15) evaluated whether they comprehended each item and identified doubts or discomforts. Results: The initial questionnaire was composed of 38 items. After the Delphi, 18 items were restructured, six were added, and 16 were removed. In the pretest phase, all items with the survey header, guidelines, and Likert model were evaluated. All items accomplished ≥80% cut-off score and were kept as in the original version. The final version of the questionnaire have 28 itens and five domains: determination, responsibility, independence, self-knowledge, and knowledge of reality. Conclusions: This study represents the first step in the development of a questionnaire that may be used in oncology clinical practice. The main findings revealed that Delphi and pretesting increased the quality of the questionnaire, making it compelling to assess breast cancer patients' comprehension and decision-making capacity about PC and ACP.


Assuntos
Planejamento Antecipado de Cuidados , Neoplasias da Mama , Humanos , Feminino , Cuidados Paliativos , Técnica Delphi , Compreensão , Inquéritos e Questionários , Neoplasias da Mama/terapia
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