Abstract
BackgroundInformal carers of persons with dementia are in contact with numerous healthcare professionals (HCP) in a complex healthcare system. Successful collaboration between the parties involved appears to be essential for good dementia care. Thus, we investigated the perceptions of both HCP and informal carers regarding successful collaboration and sought to describe obstacles and facilitators.MethodsAs part of the 7th framework EU project RightTimePlaceCare, five focus groups were conducted with HCP and informal carers of persons with dementia in Germany (n = 30 participants/ time: Oct/Nov 2011). A supplementary secondary data analysis was performed, applying qualitative content analysis with open coding.ResultsThe derived categories were sorted into three overarching themes: collaboration between HCP and informal carers, collaboration among HCP and the impact of resources and healthcare system. HCP and informal carers largely agree on what facilitates or impedes successful collaboration between them. Making the initial contact appears to be a major challenge. While HCP expect to be contacted, informal carers hesitate to seek assistance, primarily due to inner barriers. Permanent contact person/institution, well-trained, empathetic HCP who can establish a trustful relationship are regarded as facilitating collaboration. The relational perspective is more clearly emphasised by HCP than by informal carers. This may be attributed to the absence of a permanent contact person in Germany.Sufficient information relay, clear responsibilities, motivation and defined aims, and a personal relationship between professionals are mentioned as facilitators. External factors, such as rapid staff turnover, insufficient time resources and conditions specified by the health and long-term care system causing financial competition between providers, are described as general barriers to successful collaboration.ConclusionsHCP and informal carers had comparable perceptions of successful collaboration among them. The initial contact seems to be particularly challenging. Better strategies are urgently needed to facilitate the access to professional support. A permanent contact person (e.g., a case manager) might improve collaboration among all the parties involved, but this is not available regularly. Constraints created by the healthcare system may considerably hinder successful collaboration.
Highlights
Informal carers of persons with dementia are in contact with numerous healthcare professionals (HCP) in a complex healthcare system
The discussions between the informal carers were balanced: all the participants joined in the discussion except for the person with dementia
The results revealed that HCP and informal carers largely agree on what facilitates or impedes good collaboration between them
Summary
Informal carers of persons with dementia are in contact with numerous healthcare professionals (HCP) in a complex healthcare system. Different types of support are required when the disease progresses, and persons with dementia and their families are in contact with a considerable number of healthcare professionals (HCP) working in different settings [3, 4]. Age-related multi-morbidity further increases the contacts with different disciplines and extends the complexity of interactions, often leading to the fragmentation of healthcare services [5, 6]. Both HCP and informal carers have to address numerous logistical and informational challenges. Successful collaboration among HCP and between HCP and informal carers appears to be crucial for good dementia care
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