Kudus Oluwatoyin Adebayo writes that caregivers staying with sick relatives in the health facility experience health and well-being challenges

Informal caregivers (ICs), who are family members, relatives or friends of hospitalised patients, are regular sights around hospitals in Nigeria. ICs help inpatients to maintain emotional balance and assist with tasks like medicine administration, communicating with healthcare professionals and navigating of the health system. Some engage in specialised care tasks such as taking samples to the laboratory, emptying urine bags and defecation basins and moving immobilised patients. They provide this unpaid care because a significant healthcare human resource vacuum exists in our hospitals. Unfortunately, ICs face significant challenges, which can be worsened by the circumstances under which they support patients on admission. For example, professional care providers often view their presence as counterproductive. ICs are also exposed to vulnerabilities, illness and decreased quality of life. They lack support and have unmet financial, social, training and information needs, while also experiencing psychosocial issues. In this piece, I draw the attention of policy actors in the health sectors of Nigeria to the challenges facing ICs in our hospitals and propose steps for action towards alleviating their plights. The suggestions are based on evidence from a study funded by Consortium for Advanced Research Training in Africa (CARTA) titled “The Lived experiences of migrating informal caregivers in a tertiary health facility: Understanding and action for health systems improvement in Nigeria”. Specifically, the study’s Research Team (Dr Kudus Oluwatoyin Adebayo, Dr Mofeyisara Oluwatoyin Omobowale, Rukayat Usman, Funmilayo Omodara and Atinuke Olujimi) documented the experiences of people who travel far from home to care for hospitalised patients while stationed in/around an urban tertiary health facility in Southwestern Nigeria.

One of the issues we raised in our research is: why are do relatives “hang around” and live in/around the hospital? To this question, we learned first of all that ICs are constrained to stay and hang around because care-seeking travels take them far from home to places where daily commuting is difficult, costly, inefficient, impractical or impossible. Second, we learned that ICs desire to be near in space, time and relationship to hospitalised patients. Third, there is policy contradiction between established rules and everyday professional care practice. An IC is expected to be on the ground to help the patient, although established rule is against it. Fourth, the hospital is using ICs to fill formal human resource vacuum and service inefficiencies. The labour of ICs is being co-opted to make up for health system problems and institutional failures, especially staff shortages. The fifth reason is the clinical status of inpatients. Patients clinically determined to be unstable or in critical or dire condition need supportive care that the hospital and patients themselves cannot fulfil alone. Additionally, two philosophies of care influence the temporary residence of caregivers in the hospital. The first is based on the culture of care in the Nigerian society, whereby relatives view that illness is not being for the sick to bear alone. The second philosophy is the practice of holistic care, where health workers try to involve family members in care process for optimal clinical outcomes for inpatients. Finally, hospitalisation is costly for many low-income earners and poor people referred to tertiary hospitals for specialised care.  The high cost of staying also applies to relatives who often engage in mobilising resources needed for the care of inpatient through the duration of hospitalisation.

Apart from why they stay with hospitalised relatives, what challenges do ICs face, and how do these challenges impact their lives? Evidence from our research show that ICs staying with sick relatives in the health facility experienced health and well-being challenges. These include stress, bodily breakdown, weakness, pain, sleeplessness, and poor feeding. They also experienced mental and psychological distress as they reported feeling sad, unhappy, angry, paranoid, and aggressive towards the situation.  They are also at risk of infection and illness because of their presence and prolonged stay in the hospital. Secondly, the hospital environment is not conducive for ICs. They have challenges navigating the facility while exposed to harsh weather, noise and smell. The hospital staff reported that caregivers use hospital spaces indiscriminately because of limited access to accommodation and toilet facilities, through how they use spaces and disrupt regular hospital operations. These have significant implications for both human and environmental health. Thirdly, ICs experienced social and economic issues. Socially, ICs reported loss of livelihood, disruption of religious routines and commitments, and support fatigue. There were issues with patient abandonment, absenteeism, and social isolation due to prolonged stay in the hospital. Financial constraint is the most dominant dimension of economic challenges experienced by ICs.  They reported accumulated indebtedness and perceived wastage of their limited resources while supporting hospitalisation care.

 Fourthly, ICs were exposed to security and safety problems during their stay.  Although security guards are available in the hospital, the perception of the hospital community as an open community, where entry-exit control is minimal, exposed them to risks, harassment, theft and fraud. The security concern and risks are higher for those who sleep outside with their belongings. Fifthly, ICs experienced relational and attitudinal challenges. These include interpersonal conflicts shaped by information asymmetry, misunderstanding and language barriers. These conflicts often take violent dimensions as ICs sometimes harass, fight or beat health workers and other staff. Finally, ICs have limited access to water, poor sanitary practices and hygiene because of inadequate amenities and facilities in the hospital. In a few places with hygiene amenities, access control by the environmental health assistants makes access to them challenging for ICs, as the hospital workers sometimes lock up toilets when there is a shortage of water supply.

What should be done to address the challenges facing informal caregivers? There is the need for managers of Nigeria’s health sector to prioritise ICs’ health and well-being as key actors in the Nigerian health system. Hospitals receiving ICs from long distances should design and implement interventions to improve facilities, provide leisure opportunities, support caregivers’ community, and promote their physical and mental well-being. Education and sensitisation, focused on hospitalisation education with orientation and planning contents, should be provided by health workers to ICs at the point of referral and upon arrival in the tertiary health facilities. Hospital management should create awareness on supportive services, and encourage caregivers to subscribe to them, especially for those who can afford it. Special caregivers’ sensitivity training should also be offered to hospital staff.

Policymakers at all levels should formulate and implement policies and programmes that acknowledge caregivers’ role in hospitalisation care in Nigeria. Hospital managers should identify opportunities for creative synergies between ICs and the formal care workforce and invest in continuing process evaluation of service delivery with the aim of improving efficiency. Furthermore, hospitals should strengthen existing initiatives designed to reduce the presence of caregivers and lessen the burden of the ones still hanging around.

More importantly, the government should provide fund and support public health facilities to address institutional dysfunctions that make ICs’ presence a necessity, especially in tertiary health facilities. The government should also drastically reduce health inequalities while hospitals revamp the health institution by integrating disparate but interlinked services. Also, by leveraging on technology to improve efficiency in payment and pharmacy services, the dependency of tertiary health facilities on ICs will reduce. Informal caregivers are central to the care of hospitalised patients in Nigeria. Despite the limited acknowledgement of their indispensable roles and contributions, they will remain critical in the country’s health system until the factors creating the gap they are filling are addressed.

Dr Adebayo, is of the Institute of African Studies, University of Ibadan, Nigeria and the School of Public Health, University of The Witwatersrand, South Africa. He writes via oluwatoyinkudus@gmail.com