Go Wish card game-exploring end-of-life wishes of patients in oncology palliative care: a qualitative study.

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.

Relationship Between Religion/Spirituality and the Aggressiveness of Cancer Care: A Scoping Review.

CONTEXT: Religiosity/spirituality/religious-spiritual coping (RS) are resources used by cancer patients with cancer to help cope with the disease and may influence the preference and receipt of end-of-life (EOL) treatment. OBJECTIVES: To examine the relationship between RS and the EOL care preferred or received by cancer patients. METHODS: This review protocol is registered on (International Prospective Register of Systematic Review, CRD42021251833) and follows the recommendations of the preferred reporting items for systematic reviews and meta-analyses checklist. Embase, Proquest, PubMed, Scopus, and Web of Science databases were consulted. Google Scholar was consulted for additional publications and gray literature. Quantitative studies including adults with any cancer type/stage were eligible. The paper selection was performed by two independent reviewers; the methodological quality was measured using the Newcastle Ottawa scale. RESULTS: Seventeen studies were included in the review. In general, RS is related to the preference or receipt of aggressive EOL care and with less advance care planning. Spiritual care by the medical team is related to higher referral to hospice and less aggressive care; in contrast, high spiritual support from religious communities is associated with less hospice and more aggressive care. Religious denominations influenced health care preferences, as Catholics were less likely to sign a do-not-resuscitate order and Buddhists or Taoists received more aggressive interventions at the EOL. Most studies (70%) were of high quality according to the Newcastle Ottawa scale. CONCLUSION: RS is associated with more aggressive EOL treatments, as well as with lower rates of ACP in cancer patients. On the other hand, spiritual care provided by the medical team seems to be associated with less aggressive EOL care.

An explorative analysis of the differences in levels of happiness between cancer patients, informal caregivers and the general population.

BACKGROUND: Although cancer patients experience distressing symptoms and health-related changes in their quality of life, they may report positive emotional states. The lives of informal caregivers of cancer patients may also be affected by the patient's cancer diagnosis; however, they may also find benefits in their experiences. Noticeable changes are reported in personal priorities after an oncologic diagnosis that can lead individuals to restructure their values and the way they perceive life. This study aims to assess happiness/satisfaction with life and positive and negative affect in cancer patients and informal caregivers compared with healthy people in the general population. METHODS: A cross-sectional study with participants recruited online in five regions of Brazil through the social network site Facebook® and the application WhatsApp®. Surveys were completed using the SurveyMonkey® platform. A different sample of cancer patients and informal caregivers that was personally interviewed with the same forms was also grouped in the present analysis. Variables with p-values < 0.05 in the univariate analysis were included in linear regression models (stepwise, backward). RESULTS: A total of 2580 participants were included, of whom 2112 were healthy representatives of the general population, 342 were cancer patients, and 126 were informal caregivers of cancer patients. In the multivariate analysis, the cancer patients and informal caregivers were happier than the healthy people in the general population, even after controlling for age, sex, educational level, and income. The patients and caregivers had lower scores for positive affect and higher scores for negative affect. CONCLUSIONS: Overall, the conditions related to happiness, satisfaction with life and positive affect are similar for all groups. However, cancer patients and informal caregivers report increased rates of happiness and satisfaction with life compared with theoretically healthy people, although they have lower positive affect scores and higher negative affect scores. It is suggested that cancer patients and caregivers of cancer patients experience more difficulties (suffering) on ​​a daily basis. However, given the increased difficulties, they perceive life differently, reporting that they are happier.

What Is Missing for You to Be Happy? Comparison of the Pursuit of Happiness Among Cancer Patients, Informal Caregivers, and Healthy Individuals.

CONTEXT: After cancer diagnosis, personal value priorities may change in a way that would transform such values and how life is perceived by cancer patients and their caregivers, including happiness and its pursuit. OBJECTIVES: The objective of the study was to analyze and compare what cancer patients, informal caregivers, and healthy population believe that would make them happy. METHODS: A qualitative content analysis was performed on the responses to a single question: "What is missing for you to be happy?" Narratives of cancer patients (n = 242, face-to-face interview), informal caregivers (n = 125, face-to-face interview), and healthy participants (n = 1,671, recruited through social media, online survey) were analyzed. Word clouds were created for each group of participants. Contents were identified and frequencies were compared among participants by means of chi-square and Fisher's exact tests. RESULTS: Overall, participants were pursuing better health (n = 288, 14.1%), better interpersonal relationships (n = 456, 22.4%), money (n = 412, 20.2%), and work-related aspects (n = 481, 23.6%). Cancer patients and informal caregivers sought better health and cure more often than when compared to healthy people (P < 0.001). Among cancer patients, survivors' profile tended to be similar to that of the healthy population concerning what they need to be happy. Unexpectedly, "cure" (22.7%) was more frequent among participants with incurable cancer. CONCLUSION: Regardless of the group they were in, participants sought happiness in what they considered to be important to their lives, but it was something they did not have at the time of the interview. Psychoeducational and cognitive-behavioral strategies focused on how to deal with life expectations among people facing cancer are awaited.

The Pemberton Happiness Index: Validation of the Universal Portuguese version in a large Brazilian sample.

The Pemberton Happiness Index (PHI) is a recently developed integrative measure of well-being that includes components of hedonic, eudaimonic, social, and experienced well-being. The PHI has been validated in several languages, but not in Portuguese. Our aim was to cross-culturally adapt the Universal Portuguese version of the PHI and to assess its psychometric properties in a sample of the Brazilian population using online surveys.An expert committee evaluated 2 versions of the PHI previously translated into Portuguese by the original authors using a standardized form for assessment of semantic/idiomatic, cultural, and conceptual equivalence. A pretesting was conducted employing cognitive debriefing methods. In sequence, the expert committee evaluated all the documents and reached a final Universal Portuguese PHI version. For the evaluation of the psychometric properties, the data were collected using online surveys in a cross-sectional study. The study population included healthcare professionals and users of the social network site Facebook from several Brazilian geographic areas. In addition to the PHI, participants completed the Satisfaction with Life Scale (SWLS), Diener and Emmons' Positive and Negative Experience Scale (PNES), Psychological Well-being Scale (PWS), and the Subjective Happiness Scale (SHS). Internal consistency, convergent validity, known-group validity, and test-retest reliability were evaluated. Satisfaction with the previous day was correlated with the 10 items assessing experienced well-being using the Cramer V test. Additionally, a cut-off value of PHI to identify a "happy individual" was defined using receiver-operating characteristic (ROC) curve methodology.Data from 1035 Brazilian participants were analyzed (health professionals = 180; Facebook users = 855). Regarding reliability results, the internal consistency (Cronbach alpha = 0.890 and 0.914) and test-retest (intraclass correlation coefficient = 0.814) were both considered adequate. Most of the validity hypotheses formulated a priori (convergent and know-group) was further confirmed. The cut-off value of higher than 7 in remembered PHI was identified (AUC = 0.780, sensitivity = 69.2%, specificity = 78.2%) as the best one to identify a happy individual.We concluded that the Universal Portuguese version of the PHI is valid and reliable for use in the Brazilian population using online surveys.

Further evaluation of the EORTC QLQ-C30 psychometric properties in a large Brazilian cancer patient cohort as a function of their educational status.

PURPOSE: The European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30) is considered a valid instrument for use in Brazil. However, the previous Brazilian validation study included only 30 lung cancer patients and only measured test-retest reliability. The aim of this study was to evaluate the psychometric properties of the EORTC QLQ-C30 in a sample of cancer patients at different educational levels who completed the instrument administered by an interviewer. METHODS: Data from six prospective studies conducted by the same group of researchers were combined in this study (N = 986). RESULTS: Reliability was assessed using Cronbach's alpha coefficient, all values of which were >0.7, with the exception of cognitive functioning, social functioning, and nausea and vomiting (α = 0.57, α = 0.69, and α = 0.68, respectively). In multi-trait scaling analysis, convergent and divergent validity were considered adequate (validity indices were 91.6 and 97.4%). In general, moderate to strong correlations were found between the subscales of the EORTC QLQ-C30 and its respective dimensions from the WHOQOL-bref, the hospital anxiety and depression scale, and the Edmonton Symptom Assessment System (ESAS) instruments. In addition, the EORTC QLQ-C30 was able to differentiate groups of patients with distinct performance statuses and types of treatment (known-group validation). Statistical analyses were also performed on educational status, yielding similar results. CONCLUSIONS: Detailed psychometric property data using the EORTC QLQ-C30 in Brazil are added by this study. In addition, we demonstrated that this instrument is in general reliable and valid regardless of the patient educational level.