About
Palliative, end of life and bereavement care is one of the most neglected and complex areas of health systems today, one that affects all humans and that can only be understood by crosscutting disciplines. Global need for this care approach is fast-growing in an ageing and changed social world with limited care resources. Worldwide projections published in the Lancet Global Health in 2019, in which our group collaborated, showed the number of people dying with serious health-related suffering is set to double from 26 million in 2016 to 48 million in 2060. This includes children, adolescents and adults living and dying from complex chronic conditions. The loss of each of these persons leaves around five people grieving. Palliative, end of life and bereavement care should be accessible to all. Research is needed to help achieve this.
Our group brings together researchers and clinicians from different fields, working closely with patients and carers to act as a hub for interdisciplinary research and innovation. As an emerging research strand of ICBR, our main goals are to build fresh knowledge and discover new ways of organising care, interventions and product solutions, with a view to help people live better with illness, death and bereavement, according to what is most important to them and with the best possible quality of life.
Main achievements
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Largest study on international trends in place of death (32 countries, 2012-21) and the first showing the impact of the pandemic, with a rise of home death in most countries studied
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Before-after study of a new clinical consultation model for patients with palliative care needs in primary care, with promising results on symptom control
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Umbrella review of patient and family preferences for place of end of life care and death, showing most prefer to be cared for and to die at home, but not all
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One of few studies providing a comprehensive characterization of the last year of life of children and adolescents with complex chronic conditions and impact of palliative care
Publications
Scientific interests and ongoing research projects
Ongoing research projects
- EOLinPLACE
Respecting preferences for place of death is important. The first step is to classify the dying places (home, hospital, among others) in a way that is meaningful for individuals. In this context, the EU-funded EOLinPLACE project will create a solid base for the first international classification tool to map preferred and actual places towards death. We will conduct a mixed-methods study in four countries covering existing target variation (Portugal, Netherlands, Uganda, USA) to explore nuances and commonalities in people’s end of life pathways. The findings will provide new insights into how to care for the dying.
- EU Navigate
Delivering high-quality, equitable and cost-effective care to millions of older people with cancer and their frequently overburdened family caregivers is particularly important for healthcare and economy. The EU-funded NAVIGATE project aims to assess the effectiveness and cost-effectiveness of an innovative navigation intervention in more than 530 patients with cancer aged 70 years and older and their family caregivers in different healthcare systems in Europe. The intervention is based on a successfully-tested Canadian volunteer navigation programme that supports people with declining health and their families to improve their quality of life and well-being, foster empowerment, and facilitate timely and equitable access to health and social care services and resources.
Funding (last 5 years)
2022 – 2027 | EU Navigate: Implementation and evaluation of a navigation intervention for people with cancer in old age and their family caregivers: an international pragmatic randomized controlled trial | PI: Lieve Van den Block| Portuguese PI: Barbara Gomes | Horizon Health 2021 (grant agreement number: 101057361) | € 5 993 225,00 (€ 528 502,00 to Portugal)
2022 – 2026 | EOLinPLACE: Choice of where we die. A classification reform to discern diversity in individual end of life pathways | PI: Barbara Gomes | ERC Starting Grant (grant agreement number: 948609) | € 1 874 391,00
2019 – 2023 Variations in the access and outcomes of bereavement support for family carers of cancer patients | PI: Maja de Brito | Foundation for Science and Technology (PhD Fellowship number SFRH/BD/136331/2018) | € 63 538,28
2018-2019 CARE Campus - Caregiving and Ageing Reimagined in Europe | PI: Joao Malva | Course Coordinators: Maja de Brito and Barbara Gomes | EIT Health | € 86 750
2016-2020 Project PALDOM: Evaluation study of Gulbenkian Initiative on home palliative care | PI: Barbara Gomes | Calouste Gulbenkian Foundation | € 24 732