The Global Institute of Psychosocial, Palliative and End-of-Life Care (GIPPEC) set out to expand its Quality of Dying and Death research conducted in Canada to Kenya and Uganda through collaboration with its partners, Dr. Faith Mwangi Powell and Richard Powell from the MWAPO Health Group in Africa.
The Quality of Dying and Death (QODD) Questionnaire evaluates the dying experience subjectively experienced by those involved. The lines of research in Canada have also assessed the quality of hospice and palliative care through the QODD measure. Currently the most widely studied and validated tool in North America, the QODD Questionnaire has not been employed in research in Africa. The need to enhance access to palliative and supportive care in resource-limited settings has become more urgent given the rise in mortality due to non-communicable disease.
The main goal of expanding the QODD research to Africa is to generate meaningful evidence to guide policy that can improve access to palliative care for individuals with advanced and terminal disease. This project further aims at building capacity among research teams to collaborate in a global context and strengthening GIPPEC’s international partnerships to foster sustainable development.
The team has brought together expertise in research, education and project management. To date, a research protocol was adapted to satisfy the ethical and practical requirements of the clinical and academic institutions in both Canada and Kenya. The scales on the questionnaire were modified to ensure cultural competency. A short education module was developed to train researchers to conduct interviews that are sensitive in nature. A local researcher has started recruiting participants. A toolkit has been developed for expansion of the project to Uganda. Conversations around developing education with thought leaders in Kenya have also begun.
As part of the Princess Margaret Personalized Cancer Medicine Strategy, GIPPEC along its global partners work towards improving cancer care through research, education and knowledge mobilization.
In the words of Frederick Douglass, the nineteenth century African-American social reformer, abolitionist, orator, writer, and statesman, “If there is no struggle, there is no progress.”
It’s a saying that accurately captures the study team’s experiences of implementing the GIPPEC-MWAPO Health Development Group’s collaborative...Read more »
Reflecting on challenges to data collection by Nancy Gikaara
It has been both exciting, and a little challenging, working on this unique study in Nairobi Hospice, producing a number of learnt lessons that will serve as a launching pad as the study team moves to the subsequent sites.
To begin with,...Read more »
After months of planning across two continents by the collaborative research teams in Canada and in Africa, mid-October 2016 was a flurry of activity as Richard Powell (local Principal Investigator) and Nancy Gikaara (Research Assistant) traversed Kenya to launch the quality of death and dying (QODD) study in three local...Read more »
GIPPEC is working with our partners, Dr. Faith Mwangi Powell and Richard Powell, on a research project, measuring the quality of death and dying in the Kenyan hospices. Here we are filming to create elearning modules for training researchers to administer the questionnaire and collect data for the...Read more »