What factors affect well-being for personal assistants to disabled people? An ethics of care analysis of a systematic review

Abstract

Personal assistants (PAs) emanate from the independent living movement and were introduced in response to disabled people’s oppression, rooted in discrimination, institutionalisation and asymmetrical forms of care. PA schemes allow disabled people to directly employ a PA, enabling choice and control over how and by whom support is provided. Empirical research demonstrates the complexity or ‘troubles’ entangled in PA–employer relationships, alongside the poor employment conditions often experienced by PAs. Yet, there is a lack of understanding of how such issues affect PA well-being. This systematic review of 47 items explores factors that affect and can support well-being outcomes for PAs. A search was conducted in February 2024. Items were included if they focused on the PA workforce, were published since 2000 and originated from Scotland and comparable nations. Three key findings are discussed through an ethics of care lens: interdependence and the significance of being attentive to the needs of both PAs and employers; the unique PA–employer relationship, which can support or hamper well-being; and the paradox between the rewarding nature of the job and its low public status. This article concludes that improving PA well-being is an important outcome for both PAs and PA employers and requires both structural and cultural change.