Informal caregivers’ views on the quality of healthcare services provided to older patients aged 80 or more in the hospital and 30 days after discharge

Abstract

Background: 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. 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. Method: We 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. Results: The analysis yielded the overarching theme 'Informal caregiversa health service alliancequality 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.

Older ill persons’ and their adult children’s experiences with primary healthcare: A reflective lifeworld research approach

“…61 The relationship with healthcare professionals is another important aspect of caring responsibility. In line with the literature [62][63][64][65] and policies 53,66 emphasizing the importance of person-centered care, the participants in our study appreciated when healthcare professionals acknowledged the older person as an individual in a vulnerable life context. Unfortunately, the opposite was also evident, as reflected in experiences with disinterested healthcare professionals displaying no mindful attention to the situation.…”

“…In a welfare state, like Denmark, expectations of professional care and system responsibility may be high; however, in line with a study by Lilleheie et al, 64 the participants also expressed an understanding that healthcare systems were subject to pressure and needed more resources and competencies. The older persons and their adult children seemed to accept living with the consequences of more extensive and complex care and treatment being transferred from hospitals to primary healthcare.…”

Patient-centered care during the last year of life: adaptation and validation of the German PACIC short form for bereaved persons as proxies (PACIC-S9-proxy)

“…Since transitions from one care organization to another are common in the LYOL, this might explain the low degree of satisfaction. Other studies from the perspective of informal caregivers have also observed problems in discharge management and unorganized transitions [ 30 ]. Future surveys using the same instrument may observe improvements in discharge management.…”

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“…Informal caregivers are family members, friends or neighbours that provide unpaid long-term care for the significant other. The European population consists of 10%-25% of informal caregivers, providing up to 60% of the total care (Lilleheie et al, 2020;Zigante, 2018).…”