Linking PMTCT to Family-Based Antiretroviral Treatment and Care: A Behavior Change Perspective

This 41-page discussion paper elaborates a behaviour change framework that moves beyond prevention of mother to child HIV transmission (PMTCT), to extend a behavioural approach into the first year of life for HIV-positive mothers and HIV-exposed infants. In an effort to increase awareness of the potential benefits of behaviour-based approaches among those who plan and implement family-based antiretroviral (ART) programmes, author Mona Moore summarises key learnings from the literature on communication-centred interventions designed to both prevent HIV transmission and to provide care, treatment, and support to HIV-positive mothers and infants.

Moore's focus in this paper is on Africa, in particular, in light of findings such as these: Between 2001 and 2003, the number of women in 46 countries surveyed who are offered PMTCT services has increased by 83%, yet this still leaves only 5% of pregnant women in Africa with access to PMTCT. Since PMTCT programmes are a "gateway" to provision of a wider range of care, treatment and support to HIV-positive mothers, their infants, partners, and families, involving women, families and communities to improve
acceptability and utilisation of PMTCT services is key. As echoed in the World Health Organization (WHO)'s recent "3 by 5" progress report ("even the best interventions are of little use if people do not access them"), Moore suggests that a research-based behaviour change approach that incorporates
the perceived needs and preferences of women and families into programme design from the start is crucial.

In this context, Moore proposes a two-pronged approach that:

1. increases individual institutional capacity to maximise every point of contact with women and infants, providing a wider range of PMTCT/ART services.
   
   Illustration: Maternal and Child Health (MCH) Platform - includes antenatal care (ANC)-based PMTCT and rapid testing during labour and delivery, while integrating testing and counselling and treatment for eligible clients into every aspect of routine MCH care. "In one area of Uganda, testing and counselling has been shifted into the community, with counseling and testing and post-test results provided in the home environment. This home-based approach resulted in a two- to- five- fold increase in acceptance of testing and counselling in the study area, up from 6-16% to 30-42%"
2. strengthens "care links" within individual facilities and between different levels of facilities.
   
   Illustration: The District Network Approach - designed to extend the reach of PMTCT and family-based treatment and care by developing a network of satellite clinics with the District Hospital "hub" at the centre. "A higher rate of successful linkage to treatment and care has been demonstrated when 'link case managers' provide specific instructions on how to do this, as soon after receipt of HIV test results as possible, than when the more common method of 'passive referral' is used."

The latter point suggests one of the core themes that Moore highlights in Part II of the paper: the significance of qualitative research, which she characterises as "the foundation for designing programs with women families and communities instead of for them. The key here, she says, is to have behaviour-change-related conversations with clients, potential clients, and other community stakeholders as part of a rapid qualitative assessment during formative programme activities.

To illustrate the claim that "Qualitative research is the key to 're-mapping' our assumptions, challenging what we think we know by giving stakeholders in PMTCT/ART programs the opportunity to share their perspectives and experiences", Moore points to a study conducted in rural Malawi, where local "journalists" maintained daily journals to recall their neighbours' everyday conversations. Analysis of approximately 300 journals covering a span of 5 years provided "a rare look at dialogue that is already taking place among men and women in their own communities", one that reveals key lessons about the community attitudes underpining HIV/AIDS-related behaviours and that can be used to design culturally acceptable programmes. Moore cites a number of other studies that have used communication to gain insights into local perspectives.

Moore goes on to explore some examples of specific tools for change and programme methodologies that use a behaviour change approach to enhance the design of PMTCT and family-based ART programmes and to strengthen the links between the two. She makes some concrete suggestions as to how to integrate the perspectives and experiences of particular women and communities into the design of counselling interventions, based on a review of some of these approaches. For instance:

• "A set of PMTCT counselling cards for use in antenatal clinics were designed as part of the behavior change component of the national PMTCT program in Guyana. These cards are research-based, and use an interactive behavior-based format that encourages negotiation to address and overcome common barriers to use of PMTCT services in the Guyanese setting."
• "Use of a social marketing technique known as audience segmentation can help to categorize new mothers in the postpartum ward into specific 'audience segments', distinct groups of women, each with specific counselling needs. Tailoring the content of post-delivery counselling sessions better reflects the individual counselling needs of each woman and assures that each new mother gets the specific facts she needs."
• "The relative complexity and long-term nature of treatment and care for HIV-positive women and infants requires a step-by-step approach that provides an overview of care, but emphasizes only what a new mother specifically needs to
  know between one visit and the next."
• "If possible, counseling for HIV-positive women during the early postnatal visit should be conducted on a one-to-one basis. If the woman has disclosed her status to partner, family, or a friend, including this individual in the session can help assure household participation in and acceptance of recommended care, treatment, and support."

Moore hopes that this paper itself will inspire thinking and dialogue among readers that might feed back into the evolving process of its publication. She writes, "In part because there is a sense of urgency surrounding acceleration of family-based HIV treatment and care programs, this discussion paper is designed to be web-published, to allow rapid dissemination, and to encourage dialogue and feedback from behavior change professionals and HIV/AIDS health care providers working on programs to expand access to treatment and care among women and children. Comments from colleagues and additional materials not included in this review might then be incorporated into a more complete version of this paper."