CARE: the missing link in prevention

[Ricardo Walters]

Recently, I had the unexpected opportunity to share a meal with several significant rand influential oleplayers in the global response to HIV. During that time, conversation turned to the prevention agenda, and what was being recommended as a "comprehensive" approach to prevention. It quickly became apparent that, 30 years into this global epidemic, CARE is still not understood to be part of that comprehensive approach, and it caused me to reflect on what we've learned from our experience of local response within households, families and communities.

• No prevention effort can be considered “comprehensive” unless care forms an explicit component of the response. Care is not – as it is still too often considered – the poor-relation to prevention and treatment, the default, fall-back position when all else has failed. It is, in fact, the backbone of sustainable change at individual, home, family and neighbourhood levels.

• Perhaps it is the fact that, for the most part, “care” has been too narrowly defined in the mainstream global response. In a sector that has dedicated vast amounts of energy and resources into interventionist programming and service-delivery, care has come to be associated with bio-medical/clinical approaches, task-shifting to community health workers, home-based care programmes and palliative care. As such, this narrow definition may play into the popular attitude that dismisses the validity of care. But, what if we could reconceive care in a broader way: that it is the sense of mutual accountability and ownership, of shared responsibility, between people who, in some way, experience a sense of belonging to each other, or finding their identity within a particular group or setting; that it expresses itself through presence and accompaniment of those who are vulnerable.

• It’s clear that treatment and prevention are linked. But the experience of several organizations around the world, and many, many local communities also confirms the link between care and prevention. Care - in its most expansive sense - leads to change. We intuitively know this to be true in our own personal life experience: that at the moments of our lives when we made positive decisions for change (often to protect ourselves from some other vulnerability), we were often accompanied by significant others. This dynamic link between care and change, and the capacity within people to respond to that sense of shared responsibility within an environment of belonging are human strengths that are tragically underexploited in the global response to HIV.

• We know that this natural inclination to care can be suppressed. Through fear and stigma, and under the weight of trauma, people can become withdrawn and isolated. But, in every case, that care can be catalysed and stimulated and supported to flourish. There is now an almost predictable progression of local response based in this kind of psychosocial care and support at home and neighbourhood level that (1) stimulates families to acknowledge their risk and vulnerability within the household, (2) nurtures neighbour-to-neighbour acknowledgement and inter-household care, (3) leads to community-level responses for prevention within one year, and (4) transfers the process to at least two other adjacent communities. Systematic, regular home-visits are the practise that makes this progression possible. By contrast to most home-care interventions, these home visits are generalized throughout a neighbourhood. Instead of only visiting those living with HIV, everyone is visited. Instead of only discussing HIV, conversations are strategic and focused on life and wellbeing, on concerns and vision for response.

• Neighbour-to-neighbour care swells the degree of local ownership and personal accountability, and the sense of support for positive choice and change. We’ve seen, as a result, that communities begin to request testing and counseling, they take action and initiative to address risky behaviour amongst their own members, they begin to reach out to other communities, they begin to measure their own change. Care can be the key to exponential transfer, and scaled response.

What do you think? Are there opportunities to explore this dynamic further, and advocate more strongly for a different perspective on care in the effort to optimize prevention? Do those of us in the strength-based social movement of response business need to do better work to study, capture, document and share this progression?

[Jean-Louis Lamboray]

Many thanks for initiating this  discussion, Ricardo.

People link care and prevention withourt a problem. "Experts" don't.

Why is that, I wonder?

 

JL

[April Foster]

Ricardo thank you for opening up this discussion - which I feel draws us deeper into the experience and true meaning of SALT.  I believe the practise of ACP and Community Life Competence has always provided an open door for the experience of care as you describe it above.  But I also think, we have to take the challenge to be even more specific about how this happens as we facilitate and transfer this approach within communities and organisations.  For me, I have always understood the 'tools' of the ACP process to sit inside the strategy of local response and SALT to be the disposition that holds it all together.  In the Salvation Army experience, the experience of local response came to be articulated and understood through several strategic actions which included 1.  systematic home visits, 2. neighbour to neighbour conversation, 3. community conversation/couseling, 4. community measurement, 5. community to community transfer.  Tools such as the dream, self-assessment, etc sit inside this progression that teams are very consciously facilitating.  The recent visit to Ethiopia and the video clips from partners clearly articulate this link between systematic home visits, care and prevention.  JL is right in his reflection that people and communities get this link much more quickly then 'experts'.  I think we can also take the challenge as the Constellation to more explicitly draw this out in terms of what we capture and share from our experience and how we facilitate the process with partners. 

 

[YERUVA ANTHONY REDDY]

Well defined Ricardo Walters. It is thought provoking and reflective. There are plenty of opportunities to advocate, well defined care i.e, 'Mutual accountability and ownership of shared responsibility' to optimize prevention.

[LINO BABA DIYE]

Dear Ricardo,

You article is indeed very touching and also touches important aspect of the saring. There is a sayin "Sharing is caring" this means that when we take responsilblity thourgh sharing we are eventually caring. In this sence it is not limmitted to the what you rightly termed as Health caring, Home based care etc... but goes further to responsbile behaviour which at the end leads to prevention. Surely when dealing with community, we must try in as much as possible to explore and widen the scope while ensuring that the community becomes core in every bit of the understanding of the context.

Therrefore, thank you for sharing you experience whihc itotalluy agree with.

 

Lino Baba Diye,

South Sudan.

[Anne Babcock]

There are definitely opportunities to explore care and support in the context of HIV further. 

Have you read recent papers produced by the UK Consortium on AIDS and International Development  http://www.aidsconsortium.org.uk/Care&Support/Care&Support_...

 

The two documents lay out some clear recommendations for how to advocate for and implement care and support related services. 

1) care and support: the forgotten pillar of the HIV response

2) HIV care and support roadmap to achieving universal access to care and support by 2015.

 

One key message: identify the gaps in evidence and conduct research on the need for an impact of care and support and draw together best practice on effective comprehensive care and support services that realises the rights of carers. 

[Rituu B. Nanda]

Dear Ricardo,

 

Please find some experiences on Care and prevention at this link

http://aidscompetence.ning.com/page/stories-about-linking-care

 

Warm regards,

Rituu

[Rituu B. Nanda]

Dear Ricardo,

 

Here is a video uploaded by Phil where Gaston shares his personal experience on how Care is linked to prevention.

http://aidscompetence.ning.com/video/a-wakeup-call-for-gaston

 

Rituu

[Tapati Dutta]

hi Rituu

The clipping was really fantastic drawing the linkage between how 'enhancement of care quiotient' could add on to prevention. Thanks for sharing 

[Laurence Gilliot]

Hi Ricardo and friends,

 

I LOVE this video from John-Pierre where he explains how he links care with prevention with the street children he works with in the Philippines. "We give them condoms because we deeply care for them." http://aidscompetence.ning.com/video/keeping-in-touch-with-our

 

Laurence