Abstract
BackgroundIn the European Union (EU), informal caregivers provide 60% of all care. Informal caregiving ranges from assistance with daily activities and provision of direct care to helping care recipients to navigate within complex healthcare and social services systems. While recent caregiver surveys document the impact of informal caregivers, systematic reviews show that they have unmet needs.Because of the political desire to reduce the length of hospital stays, older patients are discharged from the hospital ‘quicker and sicker’ than before. The transition between different levels of the healthcare system and the period after hospital discharge is critical for elderly patients.Caregivers’ perspectives on the quality of older patients’ care journeys between levels of the healthcare system may provide valuable information for healthcare providers and policymakers. This study aims to explore older patient’s informal caregivers’ views on healthcare quality in the hospital and in the first 30 days after hospitalisation.MethodWe conducted semi-structured individual interviews with 12 participants to explore and describe informal caregivers’ subjective experiences of providing care to older relatives. The interviews were then transcribed and analysed thematically.ResultsThe analysis yielded the overarching theme ‘Informal caregivers – a health service alliance – quality contributor’, which was divided into four main themes: ‘Fast in, fast out’, ‘Scant information’, ‘Disclaimer of responsibility’ and ‘A struggle to secure professional care’. The healthcare system seemed to pay little attention to ensuring mutual understandings between those involved in discharge, treatment and coordination. The participants experienced that the healthcare providers’ main focus was on the patients’ diseases, although the health services are supposed to view patients holistically.ConclusionBased on the information given by informal caregivers, health services must take into account each person’s needs and preferences. To deliver quality healthcare, better coordination between inter-professional care teams and the persons they serve is necessary. Health professionals must strengthen the involvement of caregivers in transitions between care and healthcare. Future work should evaluate targeted strategies for formal caregivers to cooperate, support and empower family members as informal caregivers.
Highlights
In the European Union (EU), informal caregivers provide 60% of all care
Based on the information given by informal caregivers, health services must take into account each person’s needs and preferences
Recent caregiver surveys document the impact of informal caregivers [4, 5], but systematic reviews of the international literature reveal that informal caregivers have several continuously unmet needs [6, 7]
Summary
In the European Union (EU), informal caregivers provide 60% of all care. Informal caregiving ranges from assistance with daily activities and provision of direct care to helping care recipients to navigate within complex healthcare and social services systems. In the EU, 60% of all care is provided by informal caregivers, defined as individuals who have a significant personal relationship with and provide a broad range of unpaid assistance to an older person or an adult with a chronic or disabling condition outside of a professional or formal framework [1]. The contribution of these caregivers constitutes a great resource for society, and within the Organization for Economic Co-operation and Development (OECD) countries, this care has been calculated to exceed the expenditure on formal care [1, 2]. The quality of healthcare is of great importance to informal caregivers as well as the older patients, and the quality of health services for older people has an impact on the assistance needed from their caregivers
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