Exploring the needs and experiences of family carers affected by harmful behaviour by the older person for whom they care

This thesis reports a qualitative, empirical study that explored the experiences of family carers affected by violent, abusive or harmful behaviour by the older person for whom they cared. Co-designed with a network of carer-advisors, the empirical phases of the study involved: a systematic literature review of qualitative, quantitative and mixed-methods research; in-depth interviews with twelve female carers affected by harmful behaviour; and five focus groups with thirty-eight health and social care practitioners. Orientated within a social constructionist framework, the carer and practitioner accounts were initially analysed using a thematic approach (Braun & Clarke, 2006). The theory of epistemic injustice and the concept of ‘hermeneutic injustice’ (Fricker, 2007) informed a ‘deeper’, theory-informed synthesis of the accounts. This study suggests that surfacing the powerful and distinctive epistemic and ethical practices that can shape intimate relationships opens important, under-explored lines of inquiry and discussion about what constitutes harm, abuse and risk. Such an approach also highlights how the framing of ‘carer harm’ as a private, moral issue reinforces the view that if adults have the cognitive capacity to make decisions, then they are free to do so and, in effect, to tolerate and live with harm. This study critiques this view and explores the unintended implications that such a perspective can engender. It concludes by considering future directions for research, practice and policy with the aim of improving identification and responses to carer harm