GIPPEC » Projects » Quality of Dying and Death in East Africa

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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, and the African Palliative Care Association.

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 strengthen GIPPEC’s international partnerships to foster sustainable development.

The teams have brought together expertise in research, education and project management. Research protocols were adapted to satisfy the ethical and practical requirements of the clinical and academic institutions in both Canada, Kenya and Uganda. The scales on the questionnaire were modified to ensure cultural competency. A training program was developed to train researchers to conduct interviews that are sensitive in nature.

As part of the Princess Margaret Personalized Cancer Medicine Strategy, GIPPEC along with its global partners work towards improving cancer care through research, education and knowledge mobilization.

Making progress: with an occasional struggle

Jan 26th, 2017 Tweet

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...

Jan 18th, 2017 Tweet

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,...

Dec 1st, 2016 Tweet

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...

Jan 31st, 2016 Louise Lee Tweet

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...

Kenya QODD

In collaboration with MWAPO Health Development Group, 127 bereaved caregivers have been interviewed by a local reesearcher. A sample of 20 interviews employed a Cognitive Interview Method where participants were asked to explain their interpretation of the question to measure the appropriateness of the tool in this setting.

Quantitative and qualitative analysis is underway in Toronto.

Uganda QODD

In collaboration with the African Palliative Care Association (APCA), a local researcher in Uganda has begun recruitment. Data collection will be complete in the Spring of 2019.