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Abstract
Background
A growing proportion of older people in Germany receive long‐term care from informal and professional caregivers at home. Their personal assessment of the individual care situation is scarcely considered.
Aim
This study aimed to explore the subjective views of care recipients, informal and professional caregivers on the adequacy of care provision in long‐term home care arrangements.
Design and Methods
Qualitative semi‐structured face‐to‐face interviews were conducted with ten care recipients, ten professional caregivers and eight informal caregivers to capture their perspectives on the adequacy of the care received and delivered. Qualitative content analysis was applied using MAXQDA software.
Results
All groups highlighted that they perceive an underprovision of care, even though their explanations differed. The underprovision was mainly described regarding the quality rather than quantity of services. It occurs especially in interpersonal relationships and social inclusion, where the gap between the self‐perceived current situation and the desires of those affected is most prominent. The ambivalent impact of home care on social participation becomes apparent. Perceptions of an overprovision of care range from the view that it appears mainly with respect to informal care to the statement that it is currently non‐existent or generally impossible. Misprovision of care is experienced as serious whenever the interviewees face the challenge of preserving existing abilities or regaining certain skills.
Genetic testing is associated with many ethical challenges on the individual, organizational and macro level of health care systems. The provision of genetic testing for rare diseases in particular requires a full understanding of the complexity and multiplicity of related ethical aspects. This systematic review presents a detailed overview of ethical aspects relevant to genetic testing for rare diseases as discussed in the literature. The electronic databases Pubmed, Science Direct and Web of Science were searched, resulting in 55 relevant publications. From the latter, a total of 93 different ethical aspects were identified. These ethical aspects were structured into three main categories (process of testing, consequences of the test outcome and contextual challenges) and 20 subcategories highlighting the diversity and complexity of ethical aspects relevant to genetic testing for rare diseases. This review can serve as a starting point for the further in-depth investigation of particular ethical issues, the education of healthcare professionals regarding this matter and for informing international policy development on genetic testing for rare diseases.
Interprofessionelles Lernen von Auszubildenden der Pflegeberufe sowie Medizinstudierenden bietet vielfältige Chancen für die zukünftige Zusammenarbeit mit dem Ziel einer qualitativ hochwertigen Versorgung von Patient*innen. Expert*innengremien fordern daher eine frühzeitige Integration von interprofessionellen Lehr- und Lernformaten, um effektive und nachhaltige Verbesserungen in der Praxis erreichen zu können. In Deutschland wird interprofessionelle Lehre in der grundständigen Ausbildung der zwei Professionen in wachsendem Umfang in ausgewählten Fächern – obligat oder fakultativ – eingesetzt. Der Bereich der Ethik im Gesundheitswesen wird dabei bislang jedoch kaum berücksichtigt. Der Beitrag untersucht die Situation interprofessioneller Ethiklehre in Deutschland und beleuchtet deren Möglichkeiten und Grenzen vor dem Hintergrund eines Pilotprojektes.