Most societies in Uganda rely on women and girls to be voluntary caregivers for relatives when they are sick, as well as occupational caregivers for the community.
According to the Southern African Regional Poverty Network, in the context of HIV, caregiving roles are typically divided along gender lines. Women take on tasks such as cooking, feeding the patient, bathing and providing nursing care. Men tend to do tasks such as transporting patients to hospital, lifting them, and providing financial and material support.
However, speaking to patients and carers at five hospitals and health centres in Katakwi, Soroti, Ngora, Serere and Ongiino, it seems the burden of caring for the sick falls more heavily on women and girls.
The Southern African Regional Poverty Network argues that the medical infrastructure in Uganda lacks the capacity to provide comprehensive nursing care. As a result, relatives have to stay with patients when they are admitted into hospital to provide nursing care.
“I find that most of the time, I am taking care of the patient. I cannot sit with my friends like I used to,” said Perpetua Apolot from Omodoi sub-county in Katakwi District. Apolot is currently taking care of her sister in Katakwi Health Centre1V, who is bedridden as a result of HIV.
Physical and emotional burden
According to a study by international charity ActionAid*, the tasks associated with caring for people living with HIV are providing moral and spiritual support, basic nursing care, physical care – which includes lifting and turning patients – and helping the person with toileting, walking, bathing, feeding, dressing. On top of this, the caregiver has to help with household chores.
The physical demands of caregiving contribute to the burden. Those who have never cared for a seriously ill person must learn basic nursing skills, often under extremely stressful circumstances.
Discussions with caregivers revealed that they are also exposed to the risk of infection with tuberculosis (TB) while carrying out intimate personal care activities, such as bathing and helping with toileting.
Abused while giving care
In other cases, caring for a sick relative can put the person at risk of exploitation and abuse. This is particularly true when the caregiver is a young child.
Mary (not her real name), aged 13, is a primary six pupil in Serere District. She lives with her mother and five other children, of whom two are living with HIV. Mary tells me how caring for her aunt left her vulnerable to abuse and resulted in her being infected with HIV.
When she was eight, Mary’s mother sent her to care for her sick aunt in another village. She did domestic chores, like washing utensils, cooking food, washing clothes for her aunt`s husband, caring for her aunt when she was hospitalised and looking after her two year old child.
When Mary’s aunt was hospitalised at Serere Health Centre IV, Mary spent the whole day in hospital taking care of her. In the evening, she returned home to care for the child and would stay over, to keep the child company.
One night, her aunt’s husband raped her. He threatened to kill her if she told anyone. The next day, she went to the hospital and told her aunt. But her aunt, too, warned her not to tell anyone else.
Protect rights of child carers
A few months later, Mary started getting boils and shortly afterwards, she developed a terrible rash all over her body. She begun to feel weak and would sometimes fail to play with her friends. Eventually she confided in another aunt who lived in the same village. The aunt reported the case to the police and her uncle was arrested.
There is an urgent need for the Ugandan government to provide better support around care giving in families of people affected by long-term illness such as HIV and AIDS. The rights of children must not be compromised by caregiving roles. They must be protected from abuse and guaranteed their right to an education.
Home-based care programmes run by non-governmental organisations (NGOs) and community-based organisations provide alternative care giving. If delivered well, these can reduce the care burden on full-time caregivers.
Caregivers need more support
Caregivers suffer a lot of emotional stress. The current focus of psychosocial support is geared towards people living with HIV and does not integrate family members and caregivers. There is need to include family members, and especially caregivers, in HIV counselling.
It is imperative that antiretroviral treatment should be integrated with nutritional programmes, to increase adherence and reduce the high financial burden on caregivers, who have to spend a lot of money on food. The Ugandan government should also look at giving direct cash transfers to caregivers of people living with HIV, especially in poor households.
Crucially, the use of girls as caregivers affects their education and undermines Uganda’s commitment to the Millennium Development Goals, particularly goal three relating to gender equality. We must do more to protect girls from actively giving care on a full time basis in homes.
*ActionAid. An assessment of the care burden and foregone opportunities for girls and women in Katakwi District.