Chronic sorrow: lived experiences of caregivers of schizophrenic patients in Butabika mental hospital, Kampala, Uganda.

Abstract

Grief is a central experience by people diagnosed with mental illness, families, and friends. Chronic sorrow is defined as pervasive sadness and/or other emotional reactions commonly associated with grief that is permanent, periodic and potentially progressive in nature. It is viewed as a normal reaction to loss that may be to a single event or ongoing. During the experience of chronic sorrow, people feel emotional commotion, discomfort, & hopelessness. It may progress to pathological grief or depression. It may also trigger some of the psychiatric disorders in individuals who are vulnerable. No documented study in Uganda has addressed the problem of chronic sorrow among caregivers of patients with mental illness. Objective The theory of chronic sorrow was used to guide this study. The aim of the study was to explore the experience of chronic sorrow among caregivers of patients with schizophrenia in Uganda. Methodology This study employed a descriptive qualitative design using Focus Groups and In-depth interviews. The research was carried out at Butabika National Mental Hospital in Kampala. The study was conducted in Luganda. There were 10 in-depth interviews and 2 focused group discussions. The sample size was based on the principle of data saturation and purposive sampling technique was used. The caregivers who met the inclusion criteria, consented and were interviewed using the chronic sorrow questionnaire guide (caregiver version). The interviews were recorded, transcribed, translated to English and analyzed through content analysis of a framework by Graneheim & Lundman (2004). Results 9 out of 10 caregivers experienced Chronic Sorrow. The triggers identified were, unending care giving, change in behavior (refusal to take drugs, refusal to go to hospital), management of crises (during relapse and side sides of drugs), society reaction to mental illness (abandoning and mistreating patients, discrimination) and missed companionship. Unhelpful factors were poor communication by health workers, stigma from community, Uncooperative iii police. The coping strategies used were, interpersonal strategies, action oriented activities (keeping busy), positive thinking, avoidance, emotional (crying). Caregivers indicated that health workers should show understanding, communicate properly, and provide information, facts about mental illness to them and community. Taking mental health services nearer to the people throughout the country and follow up visits were also suggested. Conclusions. Caregivers of patients with schizophrenia are most likely to have chronic sorrow, the sadness and the grief related feelings are triggered by different factors which can be internal or external. Effective coping strategies are needed to be used by the caregivers in order to help them keep up with the task of caregiving and health workers have a great role to play.