The experience of caregivers of people living with serious mental disorders: a study from rural Ghana

Abstract

BackgroundFamilies and friends who give care to people with mental disorders (MDs) are affected in a variety of ways and degrees. The interplay of caregiving consequences: poverty, discrimination and stigma, lack of support from others, diminished social relationships, depression, emotional trauma, and poor or interrupted sleep are associated caregiver burden.ObjectiveThe burden of care on caregivers of people living with MDs was assessed in two districts located in the middle part of Ghana. Coping strategies and available support for caregivers of MDs were also assessed.DesignA qualitative study was carried out involving 75 caregivers of participants with MDs registered within the Kintampo Health and Demographic Surveillance Systems. Data were gathered from caregivers about their experiences in providing care for their relations with MDs.ResultsCaregivers reported various degrees of burden, which included financial, social exclusion, emotional, depression, and inadequate time for other social responsibilities. Responsibilities around caregiving were mostly shared among close relatives but to a varying and limited extent. Religious prayers and the anticipation of cure were the main coping strategies adopted by caregivers, with expectation of new treatments being discovered.ConclusionsEmotional distress, stigma, financial burden, lack of support networks, social exclusion, health impact, and absence of decentralised mental health services were experienced by family caregivers. These findings highlight the need for interventions to support people with MDs and their caregivers. This might include policy development and implementation that will decentralise mental health care provision including psychosocial support for caregivers. This will ameliorate families’ financial and emotional burden, facilitate early diagnosis and management, reduce travel time to seek care, and improve the quality of life of family caregivers of persons with MDs.

"For better for worse is not easy’’, Challenges and Needs of Family Caregivers of Dementia Patients Seeking Care in Kumasi: A qualitative study

“…In consistent with previous research family caregivers of dementia people face several public backlashes [33]; [27]; [28]; [34]. The public backlashes include ridicule, mockery and social stigma family caregivers of dementia patient face as a result of caregiving duties.…”

Psychosocial supports utilized by caregivers of patients with dementia in South western Uganda: A qualitative investigation

“…In our study caregivers in Southwestern Uganda receive emotional and instrumental support for their ailing patient with dementia from sources outside of the medical system These supports were most often obtained from one's religious community, social network, and one's own family. In a similar study in Ghana, Caregivers reported facing financial burden, social exclusion, emotional challenges , depression, and inadequate time for other social responsibilities and that the responsibilities around caregiving were mostly shared among close relatives (18). This is consistent…”

“…An emerging body of research from LMICs suggests that informal caregivers in LMICs also experience emotional distress associated with managing their loved one's daily care routines and challenging behavioral symptoms (13)(14)(15). Caregiver burden and associated distress in LMICs is also compounded by lack of social support and shortage of formal specialized medical care for people with ADRD (16)(17)(18)(19). Given the projected rapid increase in ADRD prevalence in sub-Saharan Africa, enhancing support for caregivers of persons with ADRD in this region is of urgent importance (8).…”

Sobrecargas física, emocional e social dos cuidadores informais de idosos

“…(21) The work burden, the complicated coexistence with the care receiver, and the limitation of the caregiver's time to invest in health promotion actions often end up influencing the caregiver's illness. (22) In terms of pain, the average burden of the participants who started to experience pain after the elderly had become bedridden, was significant for the domains emotional burden, personal life implications, financial burden, mechanism of effectiveness and control, and total burden score. For those caregivers who continue experiencing pain after they provide care, the mean burden is higher, significantly affecting all the domains evaluated.…”