Challenges of Providing Home Care for a Family Member with Serious Chronic Mental Illness: A Qualitative Enquiry

Abstract

The South African Mental Health Act of 2002 advocates the de-institutionalization of treatment of patients with mental disorders, so that the mental health care users or patients are treated in their communities. Although this approach is often used to discharge patients from hospital, no feasibility assessments are conducted to ascertain adequate care for these patients. The objective of the study was to explore the experiences of family members who provide home care for patients with serious mental disorders. A qualitative explorative design was used to interview 20 primary caregivers whose family members were readmitted to a public psychiatric hospital in Pretoria. Data were analysed using NVivo version 11. The findings are that caring for patients with serious mental illness at home is difficult, sometimes unbearable, because the families have to deal with violence perpetrated by the patients, safety concerns, financial difficulties and emotional turmoil, and wish that the patients would be kept in institutions. The absence of required skills and resources to care for the mentally ill at home exposes the patients and their families to emotional, financial and social difficulties, and results in unfavourable outcomes for both the patients and their families.

Psychiatric patients’ experience in receiving services provided by non-specialist community nurses, southern Thailand

“…Moreover, the home visiting of community nurses stigmatizing their patients as being mad is similar to the findings of other studies (Juntapim & Nuntaboot, 2018; Mokwena & Ngoveni, 2020). Mental illness often impairs a person’s capacity to perceive and to act with good judgment.…”

“…Perceived barriers were related to their experiences of suffering due to their psychiatric symptoms, the side effects of treatment such as stiffness and lethargy, and the loss of daily life functioning (Mokwena & Ngoveni, 2020), but not recognized by the community nurse. They live with extremely sadness, suspicion, incapacity of feeling, etc., whereas they realize that nobody senses their real suffering, but it is also hard for patients to explain this to others (Mokwena & Ngoveni, 2020). Suffering from mental illness increases if patients perceive loneliness, hopelessness, and helplessness in not being cared for (Waring, 2019).…”

Challenges to the provision of home care and support for people with severe mental illness: Experiences and perspectives of patients, caregivers, and healthcare providers in Dar es Salaam, Tanzania

“…These include high burden of care, social exclusion, health impact, not meeting the needs of caregivers, burnout (emotional distress), high social stigma, lack of support networks (low social support for caregivers), and low quality of life of caregivers [21,22]. Sometimes caring for patients with serious mental illness at home may be difficult and unbearable due to violence perpetrated by the patients and safety concerns and the lack of skills required to manage patients that would make caregivers wish patients were kept in institutions [23]. Such challenges are influenced by the dynamics of family relationships, cultural and spiritual context of the understanding of mental illness, caregiving practices, and community attitudes [24].…”

Why Do Patients with Mental Disorders Default Treatment? A Qualitative Enquiry in Rural Kwazulu-Natal, South Africa

“…The South African Mental Health Act of 2002 advocates the de-institutionalization of treatment of patients with mental disorders, so that the mental health care users are treated mostly in their communities and homes. The special needs to care for such patients are often not met [ 10 ], which includes supervision for meeting hospital appointments. Both the supervision and resultant attendance of hospital are required to promote optimum treatment outcomes.…”

“…The proportion of Africans who receive treatment for mental health problems is extremely low [ 13 ], and treatment default contributes to the lower numbers that receive treatment. In South Africa, caring for a patient with mental illness comes with additional costs for the family [ 10 , 14 ], which may impact on the ability of the patient to access health facilities. This is particularly true for people of lower economic status, who cannot afford medical insurance and among which treatment facilities are fewer and more difficult to access.…”