Livro e/ou e-books
- 2007 –“Viva a Vida, um conto sobre a vida e a morte” – Climepsi Editores (compra através do site da AMARA: www.amara.pt)
- 2015 – Manual AMARA de apoio à formação “Vida e Morte, a mesma Preparação”
8 Abril 2013: Artigo: “Cuidar de doentes em fim de vida. Qual a preparação?” MSN – Saúde e Bem Estar (http://saude.pt.msn.com/saudeemedicina/educacaoparaasaude/item/1897-cuidardedoentesemfimdevidaqualapreparação)
Tese de doutoramento
Ansiedade perante a morte e burnout em cuidados em fim de vida: reduzir a ansiedade perante a morte poderá diminuir o burnout e aumentar a qualidade da relação de ajuda (auto-percepção)? http://www.amara.pt/wordpress/wp-content/uploads/2014/07/Carol-Death-anxiety-and-burnout-in-end-of-life-care.pdf
2017: "Including personal development in palliative care education to address death anxiety" (International Journal of Palliative Nursing, vol 23, Nº 1)
Background: Death anxiety may interfere with health care workers' (HCW) relationship with patients and their families.
Aims: Evaluate an intervention to address death anxiety and improve HCW skills dealing with patients/families in palliative and end-of-life care.
Design: Quasi-experimental mixed methods approach with a pre-test/post-test design.
Participants: 208 HCWs receiving the intervention and working in end-of-life care, in and out of palliative care units, were invited to answer quantitative and qualitative questionnaires. In the end, 150 returned with quantitative answers and of these, 94 with qualitative answers as well. Additionally, out of the 150 participants, 26 were recruited for interview.
Results: Pre- and post-test results revealed a significant reduction in levels of death anxiety, an increase in existential well-being, and a significant improvement in HCWs perception of the quality of their helping relationship skills with patients/families. Content analysis provided and understanding of the difficulties experienced by the HCWs and the positive impact of the intervention.
Conclusion: An intervention to address death anxiety and help relationship skills can reduce the use of avoidance machanisms and improve HCW self-perceived psycho-existential support to patients/families.
Keywords: death anxiety; professional education; burnout.
2012: “Assessing burnout in Portuguese health care workers who care for the dying: validity and reliability of a burnout scale using exploratory factor analysis” (Psychology Community & Health, vol 1(3), 257-272).
Aims: The aim of this study was to develop an effective instrument to measure levels of burnout in Health Care Workers (HCWs) who care for dying patients and confirm the validity and reliability of the scale. The Burnout scale for workers who care for dying patients was created in 2005, by Gouveia Melo, using items from the Maslach Burnout Inventory (Human Services Survey) (Maslach, Jackson, & Leiter, 1997), the Burnout Test (Service Fields) (Jerabek, 2001) and items specifically designed for burnout in end-of-life care. Method: The scale was validated with 280 HCWs working in oncology hospitals and in community home care in different parts of the country. The psychometric methods used were exploratory factor analysis using principal components analysis (PCA), Cronbach’s α coefficients, and intra-class correlation coefficients.
Results: The initial 40 items were submitted to analysis for suitability of the data and 38 items were chosen for PCA. Results showed 3 main components with 36 items explaining a total of 34.29% of the variance. These factors were emotional exhaustion (15 items), professional fulfillment (14 items) and depersonalization (7 items). Cronbach’s α coefficients were .86 for emotional exhaustion, .83 for professional fulfillment and .63 for depersonalization. Pearson bivariate correlations were performed on the 150 participants, with an interval of 4 months for test-retest purposes with intra-class correlations from .55 to .59 in each domain. Convergent and divergent validation showed significant correlations.
Conclusions: The validity and reliability of this scale was established, enabling it to be used within the Portuguese population.
Keywords: burnout, scale, validation, palliative care, oncology
2011: “Can emotional support for health care workers to cope with death anxiety reduce burnout and improve patient care?” (Journal of Palliative Care, 24:4 Winder 2011)
Death anxiety may interfere with health care workers’ (HCWs) relationships with patients and patients’ families and increase HCWs’ levels of burn - out. This study shows the impact of a six-day course for HCWs that provided training in communication, in offering emotional and spiritual support to patients, and in personal introspection on death anxiety. The HCWs were given questionnaires to evaluate their level of burnout, personal well-being, and death anxiety as well as the quality of their relationships with patients before the course and four months after it. There were 150 study participants, all HCWs involved in caring for dying patients (85 in palliative care units and 65 in other settings). There was a control group of 26 HCWs who cared for the dying in settings other than palliative care units. The results show that the course appeared to lead to a significant reduction in levels of burnout and death anxiety; they also indicated an increase in personal
well-being and professional fulfillment, and participants perceived an improvement in the quality of their relationships with patients and patients’ families.
Keywords: burnout, end-of-life care, death anxiety, existential fears, training in palliative care, emotional support for health care workers.