Absent government puts burden of care on youth

For almost six months now, John Mberi*, 14, from the high-density suburb of Mufakose in Zimbabwe's capital, Harare, has been taking care of his sick mother, Fortunate, who returned home from neighbouring South Africa very ill.

The community attributed Fortunate's condition to food poisoning while awaiting deportation in the infamous Lindela repatriation camp in South Africa, but close family members knew that Fortunate was HIV positive.

Taking care of his ailing mother has been very difficult for John, and he often misses school when her condition is worse. On days like this he has to wash, cook, clean and bathe his mother in bed using a bucket of water.

"On her return from South Africa, my mother sent me to her only surviving brother, who lives in rural Mutoko [about 200km outside Harare]. He refused to come, saying we should relocate to the rural areas, but we had no money to hire a vehicle to ferry our things," John told IRIN/PlusNews.

To ensure the family's survival, he now sells roasted and salted groundnuts at a nearby bar after school. Occasionally the family gets help from the local United Methodist Church.

"Sometimes we can't afford the medicines that are prescribed at the local clinic. The drugs are cheap at the clinic but they normally don't have them in stock, so they tell us to go and buy on our own. My mother worries a lot but I have told her not to, because I will take care of her."

Palliative care still not widely understood

It was World Hospice and Palliative Care Day on 11 October but AIDS activists said in Zimbabwe there was little to celebrate.

John's situation is becoming increasingly common. As the HIV/AIDS pandemic takes it toll, many young people are carrying the responsibility of caring of sick members of the family, but are often unable to give them proper and adequate care.

Activists argue that the responsibility of caring for those with long-term or life-limiting illnesses lies with the government, not young people like John.

According to the Hospice and Palliative Care Association of Zimbabwe (HOSPAZ), palliative care is defined as the management of the many physical, psychosocial, spiritual and emotional needs of people with progressive life-limiting illnesses; it is not about "helping someone die" but about "helping someone live as comfortably as possible with their illness".

Read more

"At the end the patient dies, and I am left feeling affected"

Care-givers also need shoulder to lean on

NGOs struggle to feed the hungry

Underpaid and undervalued - caregivers go hungry

The challenge of stigma

Rachel Zimunya from HOSPAZ said palliative care was still not widely understood or implemented, and not standardised although Zimbabwe was one of the first countries in Africa to embrace the hospice and palliative care concept.

"Everyone living with a life-limiting illness has the right to quality hospice and palliative care to enable them to live with dignity and without undue pain or distress," she said on the Partners Zimbabwe website to raise awareness of the day.

"Lack of access to pain and symptom relief can prevent people living with HIV and AIDS, who may be experiencing painful and unpleasant side effects from antiretroviral (ARV) treatments, from adhering to ARVs, with the result that their life expectancy is curtailed. This breaches the right to life."

Tinashe Mundawarara, Programme Manager of the HIV/AIDS Human Rights and Law Project at Zimbabwe Lawyers for Human Rights (ZLHR), told IRIN/PlusNews: "The current health system in Zimbabwe, which is a narrative of strikes, stock-outs, expired drugs and a malfunctioning public health framework, is a cause of consternation rather than celebration. More so, there is no patient care and support system that includes the family in the hospitals."

He said there was an urgent need for reforming the laws on public health, educating people, and putting in place palliative care programmes in all hospitals as a matter of policy.

"People living with HIV/AIDS need to speak with one voice on the advocacy issues of access to treatment, drugs and care. Treatment, care and support are the hallmarks of palliative care."

bs/kn/he