Barriers and drivers of public engagement in palliative care, Scoping review

Author:

Barnestein-Fonseca Pilar,Nebro-Gil Alicia,Aguiar-Leiva Virginia P.,Víbora-Martín Eva,Ruiz-Torreras Inmaculada,Martín-Rosello Maria Luisa, ,van der Heide Agnes,Tripodoro Vilma,Veloso Verónica I.,Montilla Silvina,De Simone Gustavo G.,Goldraij Gabriel,Boughey Mark,Berger Michael,Fischer Claudia,Simon Judit,Voltz Raymond,Joshi Melanie,Strupp Julia,Halfdanardottir Svandis Iris,Sigurdardottir Valgerdur,Yildiz Berivan,Korfage Ida J.,Goossensen Anne,van Zuylen C.,Geijteman Eric C. T.,Allan Simon,Haugen Dagny Faksvåg,Iversen Grethe Skorpen,Lunder Urska,Bakan Misa,Kodba-Ceh Hana,Fürst Carl Johan,Schelin Maria E. C.,Eychmüller Steffen,Zambrano Sofia C.,Ellershaw John,Mason Stephen,McGlinchey Tamsin,Smeding Ruthmarijke

Abstract

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.

Publisher

Springer Science and Business Media LLC

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