Carers

HIV puts demands on everyday life. Physical capacity and social interaction may be affected at one time or another by HIV-related symptoms, periods of illness and treatment side-effects. Stigma and discrimination add extra burdens and can contribute to social isolation. Carers play an important role in helping people with HIV to live as normal a life as possible. However they also have needs themselves – people living with HIV are not just care recipients, they often also perform caring roles.

Children in families affected by HIV will often assume the role of a carer, for example for a parent. This may mean supporting the parent directly, such as helping them wash, get in and out of bed, and manage medication. It could also involve taking greater responsibility for household tasks such as cooking, cleaning and caring for younger siblings.

In such households, caring is not just a one-way relationship. Research on mostly black African migrant families affected by HIV in the UK found that even the most bed-ridden parents living with HIV still provided love, guidance and support for their children. Parents often sought to do this to protect their children from the emotional burden of HIV.1

Some carers are able to alleviate the burden of care work by falling back on formal and informal networks of support such as family, members of the community and voluntary sector providers. However, for those who have not established such networks, which may be the case for refugees or recently arrived migrants, this is more difficult. Children in such families may have very little time to play or interact with their peers, be absent from school and be socially isolated.

Support for young carers is vitally important to ensure they do not suffer the negative effects of caring. Some specialist support groups exist, but they are not always felt by parents to be culturally appropriate, and when they are specifically for families with HIV, confidentiality can be a concern (see www.youngcarer.com).1

Many African women living with HIV are the primary carers for their children, and their HIV status often complicates such responsibilities. Often these women are single parents and do not receive practical support for childcare or for themselves.2

See also

References

  1. Evans R & Becker S Children caring for parents with HIV and AIDS. Policy Press, 2009
  2. Doyal L et al. My Heart is Loaded: African Women Surviving With HIV in London. The Health Foundation/Terrence Higgins Trust, 2003
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