A phenomenological study of caring experiences of caregivers caring for mentally ill individuals at home in the Northdale area of Pietermaritzburg.

Abstract

In the context of recent shifts in South African national health policies that integrate mental health care into primary health care, the family rather than the institution has become the primary site of ongoing care for psychiatric clients. The purpose of this qualitative phenomenological study was to describe how caring is rendered at home for the mentally ill person by family caregivers, living in Northdale, Pietermaritzburg. Purposeful sampling was used to recruit six family caregiver participants from the psychiatric clinic waiting room. These were caregivers who had accompanied their family member with mental illness for treatment on that particular day. Data generated from in-depth interviews with these participants provided personal experiences of their caregiving practices, behaviours, and problems. Data analysis was based on descriptive phenomenology and Colaizzi’s method of data analysis and data representation. Significant statements were extracted and grouped to form larger units or clusters. The clusters were then organised into nine themes, with associated significant statements made by the caregivers: Theme 1: Family as support system. These aspects related to daily maintenance of nutrition, hygiene and grooming for the family member with mental illness. The participants indicated that the maintenance of these activities f daily living were very important in the care of the SMI individual at home. Theme 2: Commitment to care. Evident throughout the interviews were issues of how caregivers perceived and sustained the ongoing responsibilities of home care for the mentally ill. There was a willingness and complete commitment to caring for the SMI family member with all its responsibilities. Theme 3: Disruption to family life. Details emerged from the interviews about how families adjusted to the constant needs of care provision, supervision, and vigilance demanded by home care giving. The participants accepted that problem behaviours were part of caring. Theme 4: Value in contributing to care. The interviews revealed various aspects of how caregivers drew reassurance and a sense of positive accomplishment from successes in teaching, supervising and managing a mentally ill relative at home. There were positive aspects to caring in that the SMI individuals could be of help to the caregivers. Simple tasks such as empting of bins, shopping and dish washing were part of the daily routine which proved beneficial to the caregiver and the family member with mental illness. Theme 5: Maintaining hope. Various implications emerged in the study such as being hopeful, and having a positive outlook as caregiver, despite the behaviour problems and chronic nature of the client’s mental illness. Participants indicated that despite the fact that they have a responsibility to care they are hopeful that one day the family member would be as normal as any other person. Theme 6: Support and Guidance: Ongoing assistance. Several issues emerged in relation to the involvement of the community psychiatric clinic professional staff in giving support and guidance to the individual caregivers, such as provision of information about side effects of medication, especially drowsiness, impaired communication and inactivity, guidance on how to cope with taking of substances by the client, and assistance with preparing for lifelong care of the family member with mental illness. Theme 7: Concern for Continuity of care. There was the need to look at what would be the outcome if the parents were not there to care for the SMI individual. Even though this is something to think about and had been broached at one time with the psychiatrist the family and care giver are hopeful that another family member will step into the caring role should they not be there. Theme 8: Fears and difficulties experienced in caring. Problem behaviours and danger to self and others is always upper most in the minds of the care givers, this resulted in even limiting friends because the SMI individual could be influenced into taking drugs. Care giving involved taking steps to ensure the family member does not hurt himself or herself. Theme 9: Misuse of Social Grant. Financial burdens were experienced by the family of the mentally ill individual. Social grants were being used to maintain the whole family for food, lights and rent. Sometimes the caregivers are forced to hand over the social grant to the MHCU just to ensure that there will be no problems at home if they were refused. Money is used to purchase cigarettes and drugs. Fear that the grant would be stopped results in the family not willing to report the abuse to the clinic staff. Implications for psychiatric nursing practice that the study highlighted included need for intervention by the community psychiatric nurses in regard to side-effects of medication, management of problem behaviours, and education for caregivers concerning the illness and especially its progressive signs and symptoms. Further research might explore current supportive programmes available in the community to keep pace with societal changes, with particular focus on whether. caregivers are included in the visits to the clinic with the mentally ill family member and what attention is given to their needs and problems so that they feel appreciated and valued.