A bittersweet relationship: What does it mean to be the caregiver of a patient with bipolar disorder?

Abstract

Background: As with most of the chronic illnesses, the changes and consequences brought on by bipolar disorder (BD) are not exclusive to the patient and often spread to those around them, especially for direct caregivers of these patients. It is known that there is a significant emotional and physical toll among persons who coexist daily with those who suffer from this disorder.

Objective: Aware of the importance of the role played by informal caregivers (especially the family) in the stability and evolution of patients with bipolar disorder, this study seeks to explore the perception that family members responsible for bipolar persons have of themselves as caregivers of these patients.

Method: This is a qualitative study using a phenomenological design, for which the technique of focused or semi-structured interviews was employed. Ten caregivers of people with diagnosis of BD agreed to participate.

Results: Within the family, it is a single individual who has the role of caregiver. Experiences and meanings that are generated into the nucleus of the patient-caregiver relationship are full of ambivalence and involve many aspects worthy of analysing, such as the development of identities, the feminization of patient care, the process of therapeutic decision-making and the evolution of the disease.

Conclusions: It is necessary to integrate evaluation and attention for patients' caregivers, recognizing them as individuals and elucidating their constructed meanings and the dynamics established in their relationship with patients. In this way, there would be a more integrative clinical approach of the patient-caregiver relationship, considering not only the necessary pharmacological treatments but also accompanying both patient and family, along the path they travel as they experience BD.

Keywords: Caregiving; bipolar disorder; perception of disease.