CAPACITY study 6
Palliative care is a young and rapidly evolving field of care that aims to improve the quality of life of patients with life-threatening illness and their families, throughout the entire illness trajectory. Its focus is on the physical, social, psychological and existential needs of the individual patient and his or her loved ones and as such, it goes beyond mere pain relief or terminal care. Our ageing population has led to an increasing number of people with palliative care needs and it is estimated that this number will only continue to rise. Nevertheless, most people seems to be unaware or misinformed of what palliative care is and the potential benefits it holds for people with advanced serious illness and their families. As explicitly or implicitly shown by previous research, this lack of awareness and limited understanding of palliative care contributes to late referrals by health providers, a low uptake of palliative care services and potentially, the scarcity of palliative care initiatives by and for the community. There is thus a need to investigate the public perceptions about palliative care in relation to the information that is available to them and to find effective ways to create public awareness on the positive values of palliative care.
This study has two general aims. One; to deepen our understanding of the perceptions people have of palliative care and to be able to situate those in the wider ‘webs of meaning’ that surround them in the Flemish context. Two: to develop an awareness campaign to promote palliative care in the general population.
During the first research phase the focus will be on generating insight into the different institutional and public discourses surrounding palliative care. In a first study we will use discourse analysis to investigate how palliative care is presented in the online information of palliative care disseminated to the general public by policy institutions and palliative care field organizations in Flanders. We will focus on the language use in these texts, pay close attention to ambiguities and tensions and identify and interpret the discourses at play. In a second study we will again use discourse analysis to investigate media representations of palliative care and in a third study, we will study the audience reception of all these public texts (news articles and information from organizations) using focus groups. A final fourth study will focus on gathering quantitative data on the attitudes and knowledge of palliative care in the general adult population of Flanders, by using the methodological strategy of an online questionnaire. The insights gathered from these studies will then be used in the second phase of the research when the actual campaign will be developed. This will happen in close collaboration with stakeholders and using the first three steps of the intervention mapping protocol.
Marjolein Matthys: researcher
Dr. Naomi Dhollander: supervisor
Prof. dr. Luc Deliens: promotor
Prof. dr. Benedicte Deforche: promotor
Dr. Kim Beernaert: member
Prof. dr. Kenneth Chambaere: member
Prof. dr. Joachim Cohen: member
More information? Please contact researcher Marjolein Matthys.