Barriers and drivers of public engagement in palliative care, Scoping review
Barnestein-Fonseca P., Nebro-Gil A., Aguiar-Leiva VP., Víbora-Martín E., Ruiz-Torreras I., Martín-Rosello ML., van der Heide A., Tripodoro V., Veloso VI., Montilla S., De Simone GG., Goldraij G., Boughey M., Berger M., Fischer C., Simon J., Voltz R., Joshi M., Strupp J., Halfdanardottir SI., Sigurdardottir V., Yildiz B., Korfage IJ., Goossensen A., van Zuylen C., Geijteman ECT., Allan S., Haugen DF., Iversen GS., Lunder U., Bakan M., Kodba-Ceh H., Fürst CJ., Schelin MEC., Eychmüller S., Zambrano SC., Ellershaw J., Mason S., McGlinchey T., Smeding R.
Abstract Background The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC. Methods Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. Keywords: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators. Results Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities. Conclusion Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.