Caring for the caregivers
For this reporter, this was one of the most important events of the conference. Chaired by Lorraine Sherr, the well-attended session focused on a frequently ignored area of HIV care - the needs of the caregivers.
Sherr opened with an apposite statement - of the whole AIDS 2000 conference, this is the only session devoted to this topic, and placed in one of the final sessions.
Against the backdrop of this vivid opening, the first presentation was given by Sheila Dinotske, and considered an important issue in Botswana - the support of girl children acting as caregivers for people with HIV/AIDS and other chronic illnesses.
Dinotske gave details of a qualitative research study with three research questions - what are the experiences of these girls, what are their needs with relation to care giving, and what can be done to reduce the impact of lost opportunities (such as time away from school, or inability of progress to further education)?
Twenty-three girls were recruited to the study, aged 8-18, and all in full time education. The results provided some startling insights - many of the carers were not aware of the HIV diagnosis (if this was present); most of the work was done after school and included running errands and providing personal care; and boys were involved only if heavy lifting was necessary.
Surprisingly, children were not missing school, though they were very physically tired and on the whole socially isolated from peers. Recommendations from the research come as no surprise: men and boys should participate more in care provision; the school day should include time for homework during school time; and education should be compulsory as well as free. Also, bereavement counselling should be offered in some form.
Iren Bischofberger, focused on an intriguing concept - the place of humour in the context of care.
Following a review of the literature suggesting much humour in care was incidental, Bischofberger argued that the presence of intentional humour can be useful in the therapeutic relationship - for example, it can help to release anger, and by returning a spirit of normalcy to the situation, can help a person cope with some of the negative aspects of their situation.
She presented findings from a qualitative study that suggested humour can be an energiser, can help with coping strategies, and can be a 'gift' from the person with HIV to the caregiver. Bischofberger closed with a comment suited to the spirit of this presentation - humour and laughter should perhaps be the only infectious agent spread among human beings.
Gemiano Acota, related some of the difficulties experienced by carers. He specifically focused on increased levels of stress, and risk of burnout (defined here as excessive stress beyond control), and suggested some interventions.
Internal interventions included: establishing realistic goals; knowing one's limitations; learning how to limit empathy. External solutions were also suggested, such as: counselling sessions; coffee and tea 'events,' and 'buddy' system.
Acota concluded by reiterating the excessive demands on this group of carers, and encouraged the provision of support structures for carers when forming any AIDS care programme.
This presentation generated a number of comments.
One delegate raised the issue of tension between voluntary and paid caregivers. Acota responded by pointing out that in the Philippines, all voluntary caregivers received transportation allowance, and sometimes food (!).
A second delegate commented on burnout - he had worked for 6 years without a break, and suggested he had not 'burnt out' because of his commitment to the care of people with HIV/AIDS, arguing that adequate preparation of carers can help prevent damage from stress.
Another question, directed at Dinotske, asked if girl child carers had to earn money if the person with HIV was the main breadwinner. This was true, according to Dinotske, though relatives often provide monetary support in order to keep the child at school.
One delegate, keying in to an emerging theme in this session, pointed out that it was 'pathetic' that this was the only session addressing the needs of an invisible but extremely significant group of people across the world, and one delegate praised the work of all the presenters, pointing out that the issue of stigma is still prominent, as well as the fact all care is being given by women.
The final presentation fitted well with this sentiment.
Cynthia Poindexter described a study addressing the needs of 'older' caregivers - i.e. over the age of 50. This group, often caring for their own children or grandchildren, are an 'invisible' cohort, and Poindexter presented the results of an intriguing and significant study that revealed aspects of their lived experience.
Three general categories emerged. The first, emotional and attitudinal, revealed that carers reframed their experience as beneficial - though this apparent resilience should not deny a strong element of sadness and anticipatory grief that they felt. The second category, reciprocity of the relationship with the person with HIV, confirmed the bond that carers had with those in their care, over and above familial bonds. Lastly, there was a strong element of social justice – all the carers were keen on diminishing discrimination against people with HIV.
The implications of this study are clear - this population should be much more visible; care giving in this context should be seen as an honour and a privilege, and validated as such; and lastly, the caregivers should be protected from burning out.
Following this excellent array of presentations, a number of questions and comments from delegates were forthcoming.
One important comment, from a Zambian delegate, raised the issue of the human rights of carers - in Zambia, many home carers are not informed of the HIV status of their relative, and can therefore not take appropriate measures to protect themselves against infection.
Dinotske responded that carers should always be aware of the diagnosis - in Botswana, for example, the notion of 'shared confidentiality' ensures carers are aware of the HIV diagnosis.
In response to comments made in the session about the inadequacy of US support for carers, a physician based in San Francisco, whose brother died of HIV, praised the local social security system for the more than adequate support she received while caring for him.
Dinotske answered that this may be so in San Francisco, but there is no doubt that in other parts of the US, support is still severely lacking.
This exceptional session ended with the chair paying tribute to the tremendous contribution of caregivers, who were 'always there, until the end.'