Using group concept mapping to conceptualize "good public awareness of palliative care"

Raising public awareness of palliative care has been identified as a priority within research literature on public health approaches to palliative care and within policy documents from many countries, including Canada. However, there is a lack of clarity about what this entails.

To develop conceptual clarity and move from the broad goal of "raising public awareness" of palliative care to more clearly defined outcomes and priorities.

Group concept mapping is a participatory mixed methods approach that combines qualitative and quantitative analysis. Trochim's six phases of concept mapping methodology were followed.

Convenience sampling was used to invite participation. Participants were asked to brainstorm as many ideas as they wanted in response to the prompt: "Good public awareness of palliative care means . . .." A master list of these ideas was then shared with participants and they were asked to: (1) sort the responses into groups and (2) rate each response on a Likert scale of 1-5 in terms of importance. Statistical analyses were conducted to compile the data into a point map and a range of cluster maps. Participants selected the best-fitting cluster map.

Nineteen people participated in the group concept mapping exercise. Eighty-four unique statements were generated in response to the prompt, and participants selected a seven-cluster map as best fitting the data. The seven clusters represent components of good palliative care public awareness and were assigned the following labels: (1) understanding palliative care; (2) knowing how to access palliative care; (3) planning ahead; (4) community support for palliative care; (5) caregivers are supported; (6) comfort talking about death and dying; and (7) palliative care is normalized.

As a participatory mixed method, group concept mapping offers a novel approach to providing clarity and supporting action planning. It has been instrumental in refining activities to improve public awareness of palliative care in Alberta, Canada, and may be useful to others undertaking similar initiatives. Addressing these domains is a promising means of improving public awareness, understanding, and ultimately uptake of palliative care.