On the outside, looking in: A Focus Groups Study Exploring the Experience of Caring for a Loved One with Anhedonia

Background: Anhedonia, the loss of pleasure or interest in previously enjoyed activities, is a core symptom in conditions such as psychosis and depression. Carers’ perspectives on this experience are crucial but currently missing in the field, offering a unique vantage point for understanding how anhedonia manifests in everyday life and how it reshapes the caring relationship itself. This study aimed to explore informal carers’ experiences of caring for a loved one experiencing anhedonia and the challenges they face. Methods: We conducted a qualitative study using online focus groups and reflexive thematic analysis with unpaid carers of adults experiencing anhedonia in the context of a mental health condition. Participants (n = 29) were recruited in the United Kingdom through purposive sampling. Four focus groups, each with 6–8 participants, were facilitated using a topic guide developed with lived experience contributors. Discussions were audio-recorded, transcribed verbatim, and analysed using reflexive thematic analysis. Results: Carers described anhedonia as profoundly disruptive to their loved ones’ emotional expression, relationships, and participation in daily life. Accounts consistently emphasised social withdrawal, emotional blunting, and pervasive hopelessness. Carers reported significant personal burden, both practical and emotional. Carers expressed uncertainty about the causes of anhedonia, they also highlighted a lack of recognition and tailored support from healthcare staff. Conclusions: This study provides the first qualitative account of caring for individuals with anhedonia. Findings underscore the impact of anhedonia on both service users and carers, highlighting a largely unmet need for recognition, psychoeducation, and support. Interventions should address anhedonia explicitly and integrate carers’ perspectives to reduce caregiver burden and improve outcomes.