The aim of the present study was to develop a pictorial questionnaire for the assessment of health-related quality of life (PictoQOL) and to examine its content validity and usability across three exemplary population groups of different origin residing in Germany (non-migrants, Turkish migrants and Arabic-speaking migrants). A mixed-methods design combining qualitative and quantitative methods was used, comprising 6 focus group discussions with a total of 17 participants, 37 cognitive interviews and a quantitative pretest with 15 individuals. The PictoQOL consists of a pictorial representation of a total of 15 different situations. Using a visual Likert scale, respondents indicate how much each situation applies to them. Some representations proved to be culturally sensitive and were adapted. Respondents found the use of an additional graphic layer in the form of symbols in addition to pictures helpful for interpretation. The PictoQOL is considered to allow a more accessible assessment and better comparability of HRQOL across different population groups regardless of their literacy level. It is therefore considered to be superior to existing instruments for routine use in health research and practice. Future studies need to examine its convergent and factorial validity.

Zusammenfassung Hintergrund Palliativ- und Hospizeinrichtungen sind durch die COVID-19-Pandemie besonderen Herausforderungen ausgesetzt. Gründe dafür sind insbesondere das hohe Alter und bestehende Vorerkrankungen der Patienten sowie ein körperlich naher Kontakt zwischen Mitarbeitern und Patienten. Ziel der Arbeit Ziel der vorliegenden Studie ist es, bestehende Strategien, Richtlinien und Empfehlungen zum Umgang mit den Herausforderungen der COVID-19-Pandemie in der Palliativ- und Hospizversorgung zu ermitteln, die in Deutschland und anderen Ländern zum Einsatz kommen. Material und Methoden Im Rahmen eines Scoping Reviews wurden die Datenbanken PubMed, CINAHL, Web of Science und PsycInfo durchsucht. Zusätzlich wurde „graue Literatur“ über Google Search und Google Scholar recherchiert. Eingeschlossen wurden alle deutsch- und englischsprachigen Artikel im Zeitraum Januar 2020 bis August 2021, die sich auf die stationäre Palliativ- und Hospizversorgung beziehen. Ergebnisse Insgesamt wurden 51 Veröffentlichungen in die Analyse aufgenommen. Die identifizierten Maßnahmen lassen sich 10 verschiedenen Kategorien zuordnen: Maßnahmen zur Infektionskontrolle, strukturelle Maßnahmen, Besuchsregelungen, Kommunikationsstrukturen, Schulung und Aufklärung, psychosoziale Unterstützungsmaßnahmen, spezifische Überlegungen für Menschen mit Demenz, vorausschauende Pflegeplanung, Abschiednahme sowie Maßnahmen nach dem Tod. Diskussion Bei der Bewältigung der COVID-19-Pandemie dominieren insbesondere Maßnahmen zur Ermöglichung der Kommunikation zwischen Patienten, Mitarbeitern und Angehörigen, psychosoziale Unterstützungsmaßnahmen, strukturelle Maßnahmen und Empfehlungen zur Schulung und Aufklärung aller Beteiligten. Strategien zur Palliativversorgung von Menschen mit Demenz in Pandemiezeiten sowie zu Abschiednahme und Trauerbewältigung von Hinterbliebenen finden weniger Beachtung.

Background The COVID-19 pandemic, as well as efforts to prevent its spread, have had a strong impact on the delivery of rehabilitative services in Germany. While several studies have addressed the impact of these developments on health service providers and COVID-19 patients, little is known about its impact on patients in need of rehabilitative treatment because of other conditions. This study aims to identify expectations, concerns and experiences of rehabilitation patients related to service delivery in this situation. Methods Using a qualitative study design, user posts from six German online forums between March and Mid-November 2020 were systematically searched with respect to experiences, concerns and expectations of health care users toward receiving rehabilitative treatment. We used qualitative content analysis with inductive coding as our methodological approach. Results Users fearing physical or psychological impairment were concerned about not receiving timely or effective treatment due to closed hospitals, reduced treatments and limited admissions. In contrast, patients more concerned about getting infected with COVID-19 worried about the effectiveness of protective measures and being denied postponement of treatment by the funding bodies. During their stay, some patients reported feeling isolated due to contact restrictions and did not feel their treatment was effective, while others reported being satisfied and praised hospitals for their efforts to ensure the safety of the patients. Many patients reported communication problems before and during their treatment, including concerns about the safety and effectiveness of their treatment, as well as financial concerns and worries about future treatments. Several users felt that their concerns were disregarded by the hospitals and the funding bodies, leaving them feeling distressed, insecure and dissatisfied. Conclusions While some users report only minor concerns related to the pandemic and its impact on rehabilitation, others report strong concerns relating not only to their own health and safety, but also to financial aspects and their ability to work. Many users feel ignored and disregarded, showing a strong need for more coordinated strategies and improved communication specifically with funding bodies like health insurance companies and the German pension funds.

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