How is access to palliative care negotiated and accomplished among Muslim immigrants and their direct descendants in Germany, and what culturally and religiously framed narrative resources shape meaning-making in serious illness and approaching death
Florian Bernhardt, Ferya Banaz-Yaşar, María Rosa Salvador Comino, Thomas Altscher, Burkhard Dasch, Michael Terborg, Karin Scheer, Janina Krüger, David Rene Steike, Mitra Tewes, Philipp LenzBackground
Muslim immigrants and their direct descendants are a large ethnoreligious minority in many regions, yet their access to palliative care remains under-researched and poorly theorised for practice. Existing evidence points to structural, communicative and cultural constraints, while mechanisms at the threshold of access remain unclear.
Aim
We explored access to palliative care among this population, developed an explanatory model of access dynamics and reconstructed culturally and religiously framed narrative resources.
Design
We conducted a qualitative, multicentre, four-group study using constructivist Grounded theory with complementary Narrative inquiry. Loosely structured interviews followed Kaufmann’s ‘L’entretien compréhensif’ between August 2021 and December 2022.
Setting/participants
This study involved six centres in North Rhine-Westphalia, Germany. Participants were 53 adults from 14 countries in four groups (patients receiving palliative care vs not, relatives, interface stakeholders).
Results
The Grounded theory SAME SAME BUT DIFFERENT conceptualises a paradox between formal equality and lived constraint at the threshold of access. Six analytical categories operated cyclically and mutually reinforced delayed access: (I) Othering/Belonging , (II) Information/Representation , (III) Role of the family , (IV) Palliative stigma , (V) ‘Language barrier’ as a multidimensional challenge and (VI) Dealing with life crisis, illness and death .
Participants identified leverage points within the access dynamics, including native-language information and contact persons, openness to cultural-religious concerns, culture- and religion-sensitive training, Muslim support services and spiritual care and non-denominational environments.
Narrative inquiry reconstructed four culturally and religiously framed narrative resources that shaped access decisions.
Conclusions
Intersecting structural, communicative and meaning-making dynamics affect access to palliative care. Culturally adaptive, multilingual and community-engaged approaches require evaluation and should be supported by improved routine sociodemographic data.