Caring for a relative with delusional beliefs: a qualitative exploration

Abstract

WHAT IS KNOWN ON THE SUBJECT?: Delusions are common experiences in psychosis and this is reflected in the number of studies focused on improving our understanding of their development, impact, and treatments. Many service users with psychosis are in informal caregiving relationships and carers can play an instrumental role in the recovery process. There remains a lack of knowledge and understanding about carer experiences and how they cope when their relative's delusions involve them or close others. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Data drawn from five individual carer interviews, which were subject to interpretative phenomenological analysis, identified the importance of six key themes. In addition to a carer's exposure to their relative's illness symptoms and a reported lack of understanding about their relative's delusions, was a fear of delusion-driven behaviours, and the carer's attempt to conceal the true extent of their caregiving challenges to others. Carers' relationships were fractured and their coping was best described as an ongoing process, mainly developed through trial and error. It extends our understanding of important issues faced by a subgroup of carers and facilitates discussion beyond their levels of stress and burden. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: The study, with its limitations, indicates some carers may live in fear of harm from their relatives but also be reluctant to disclose to others the full story of what they are coping with. Health professionals must routinely assess for risks that informal carers may be exposed to as part of their role, and offer tailored support and interventions.

Abstract: Background In recent years, there has been a gradual shift towards the study of individual symptom presentations in psychosis, this is particularly found in studies of delusional beliefs. However, the literature remains sparse on informal caregiver experiences of individual symptoms. Aim The study sought to investigate carer experiences of supporting a relative with delusional beliefs, which involve family members. Methods Semi-structured interviews were undertaken with five caregivers and subject to interpretative phenomenological analysis. Results Interviews yielded six superordinate themes highlighting issues concerning a carer's exposure to symptoms of illness; lack of understanding about their relatives' delusional beliefs; concerns over coming to harm from their relative: efforts made by the carer to conceal their relative's delusional beliefs and their consequences; fractured relationships, and a long process of learning how to best cope. Conclusion Caring for a relative with psychosis who experiences delusional beliefs about the carer and family members can be challenging. The results underscore the importance of providing a programme of support to meet the varied needs of informal carers with an explicit aim of assisting carers in their day-to-day problem solving. It should also help to address issues carers may have about causality, including beliefs about self-blame, and identifying effective coping strategies.