HIV&Me Family Support Program

Experts agree that honest communication, shared thoughts, listening to verbal and non verbal messages, interest and attentiveness, empathy, clear messaging and a safe space in which to converse are necessary communication skills for the health and well-being of the family unit. The newly launched HIV&Me Family Support Program (FSP) addresses these issues in the context of the HIV&AIDS affected family.

However, in South Africa the reality is that open and honest dialogue may often mean parents disclosing to their children that they are HIV positive, imparting this shocking news without fully understanding what HIV&AIDS really is.

Coupled with the shame felt, the questions ‘When will I die?’ ‘How can I support my family?’ ‘Can my child handle the news?’ ‘Is my child able to keep the secret?’ ‘Will my child be bullied at school … become depressed …despise me?’ often inhibit disclosure.

And what of the child that is HIV+? Is she able to disclose her status to her family and gain support and empathy. Dealing with the emotional side of HIV&AIDS within the family environment, as well as enabling disclosure between parents and children is essential for positive living. As the statistics highlight, in South Africa HIV&AIDS affects all those within the household as well as the extended family.

• Almost one-in-three women (often mothers) aged 25-29, and over a quarter of men (often fathers) aged 30-34 are living with HIV.
  (Human Sciences Research Council (2009), ‘South African National HIV Prevalence, Incidence, Behaviour and Communication Survey, 2008: A Turning Tide Among Teenagers?)’
  
• In 2007 there were an estimated 280,000 under-15s living with HIV, a figure almost doubled since 2001.
  (UNAIDS (2008), ‘2008 Report on the Global AIDS epidemic’)
• There are an estimated 1.5 and 3 million children who have lost one or both parents, many having to live with grandparents or cousins.
  (UNGASS (2010, 31st March) 'South Africa UNGASS Country Progress Report')
• Up to one third of all attempted suicides committed to hospitals are children and adolescents driven to this condition by feelings of anger and aggression. Self -destruction amongst youth can be directed to suicide or result in high-risk behaviour such as substance abuse, unprotected sex or generally dangerous activities.
  (The Durban Parasuicide Study (Schlebusch, 2005:8).)

In response, Regency has extended its reach within the community by introducing the Family Support Program (FSP) to parents and guardians of learners in the participant HIV&Me schools.

FSP builds on the school-based intervention by enabling parents to develop better communication channels with their children and thereby facilitating the disclosure of HIV status, be it parent to child OR child to parent.

FSP enables more effective family communication by providing parents with the skills to create a safe, open, trusting and supportive environment within their households.

The program will contextualise the schools-based intervention by addressing the impact of cultural barriers, the fear of stigma towards both the parent and the child, the nature of trust, and the lack of appropriate knowledge on HIV&AIDS prevention and management.

Feedback from the pilot workshop, partnered by Shell, suggests that Regency is on the right track.

Mr Ngubane Principal of Edendale Tech (PMB) comments “a workshop of this nature is long overdue. In this region people are getting infected every day as a result of not proper teaching and information. The workshop was successful in that it got into the veins of the parents; it inspired parents to reach their friends and family”.

Willie Mafuse HIV&Me program facilitator adds “the questions that the women asked gave me insight into their plight, their fear of telling their young children that they are HIV+ and not preparing the family for the future. They are not confident that the ARVs work as they do not understand how they work”.

As up to an estimated 90 percent of care is provided in the home by untrained family and associates, and up to 80 percent of AIDS related deaths occur in the home (Uys, L (2003), ‘Guest editorial: longer-term aid to combat AIDS’, Journal of Advanced Nursing 44(1), as referred to in Ogden, J. et al (2006), ‘Expanding the care continuum: Bringing carers into focus’, Health Policy and Planning 21(5)), FSP aims to build on its current agenda by providing additional workshops that provide family members and friends with the emotional and medical skill set to better provide the home based care for people with HIV&AIDS.