Winner of Cicely Saunders Prize for Academic Excellence
Maja de Brito (pictured) recently received the prestigious Cicely Saunders Prize for Academic Excellence in Palliative Care. This prize is awarded to MSc students who have achieved particularly high marks in their Research Study Projects and subsequently impressed a panel of external judges. On receiving her prize, Maja reflected:
“It is a remarkable honour to win the Dame Cicely Saunders Prize. The moment I learned I won will remain one of the defining moments in my decision to continue on the path of research. I am most grateful to my supervisors, Barbara Gomes and Lucy Selman, for their support. They have taught me that hard work truly pays off.”
In this article Maja explains the aims of her study, particularly in terms of the challenges of caring for a family member at the end of life in the home setting.
“Governments are investing more and more in home palliative care for various reasons. However, having family members prepared to take on the responsibility of caregiving is what makes home care possible. Although there is an abundance of literature on carers, we still know little about their experiences of providing care in the home setting with the support of a specialised palliative home care team.
I took advantage of existing data from a study on the preferences of patients and carers for home palliative care (the DINAMO project) to respond to this aim. In this preliminary work, I looked at the experiences of 12 purposely selected carers with different sociodemographic backgrounds from the North of Portugal that participated in the primary study.
My analysis resulted in the finding that providing care in the home setting with the support of a specialised team can be an isolating experience (described by carers as “being locked” inside their home) and that although the partnership with the specialised home care team is crucial, the caregiving itself is so full of challenges that the team is often not able to address all of the patient and carer needs.
The most surprising finding in this study was the openness of the carers to discuss their own need for support, especially psychosocial support. They were very clear that family carers should be considered as “the unit of care” together with the patients. This specific finding challenges one of the key assumptions of the international literature on family carers. Namely, that carers are often ambivalent about being considered as the recipients of care in addition to being providers of care, which makes it difficult to deliver interventions targeted at supporting family carers.
My MSc Research Study Project reported on the preliminary results only and the final model of family carers’ experiences in providing care in the home setting. The recommendations for clinical practice, research, and policy based on these findings are currently in development.
The study has been funded by the Calouste Gulbenkian Foundation. A special thank you to all family carers and the home palliative care teams who participated in the study.
Find out more: More information about the DINAMO study, which aims to enhance advanced training and research to optimise home palliative care in Portugal, is available on the project’s webpage. Details of the various MSc and training courses offered by the Cicely Saunders Institute are available here.