Occupational Balance in informal caregivers: A focus group study with experts

Introduction: Due to demographic changes, the number of older persons with care needs is rising across the European Union. In many countries, informal care forms the backbone of long-term care provision. A remarkably neglected challenge experienced by informal caregivers is the difficulty to balance caregiving roles/tasks and other meaningful everyday activities, such as self-care, formal work, or leisure time. Although earlier research has extensively addressed the burden of informal care, the potential impact of low occupational balance on caregivers’ health and wellbeing remains underexplored. Thus, this critical exploratory study aims to examine experts’ perceptions regarding structural and individual barriers and facilitators towards a healthy occupational balance in informal caregivers.

Methods: To recruit experts in the field of occupational balance and informal care, a purposive sampling strategy was followed. Three focus groups, including international and national policy and advocacy experts in the field of informal care (n=8), occupational scientists (n=8) as well as informal caregivers (n=8), were performed. Data were transcribed verbatim and analysed using content analysis methods.

Results: Results were classified into barriers and facilitators, while further subthemes distinguishing between structural, environmental, interpersonal, and intrapersonal elements evolved.

Discussion: Considering the results through a critical gerontology and occupational therapy lens, the authors shed light on various power relations in the context of informal care and reveal disempowering structural and environmental barriers impeding informal caregivers’ occupational balance. The findings enable a better understanding of occupational balance in informal caregivers and form the basis for the development of multifaceted occupational balance interventions.