Impact of non-admission on CTC Programme Coverage

By Saul Guerrero, Valid International

Saul Guerrero is a Social and Community Development Advisor working for Valid International. Over the last four years, he has assisted in the design, implementation and evaluation of community mobilisation strategies for Community-based Therapeutic Care (CTC) programmes in Ethiopia, North and South Sudan, Malawi, Zambia, Niger, DRC and Indonesia.

This article presents the findings of a preliminary analysis by Valid International of questionnaires and Centric Systematic Area Sampling (CSAS) surveys implemented in seven countries by a variety of agencies and organisations, with a view to investigating the impact of non-admission on estimates of CTC programme coverage.

A mother with her child attending the OPT in Awassa, Ethiopia

The desire, and proven capacity, to deliver high programme coverage has been one of the main forces behind the shift from centre-based treatment to community-based nutrition programming. As such, programme coverage has become, alongside mortality, recovery and defaulting rate, one of the primary indicators of programme success. Increasingly, community-based programmes - and Community-based Therapeutic Care (CTC) interventions in particular - are including coverage surveys as an integral part of their monitoring and evaluation procedures. The Centric Systematic Area Sampling (CSAS) method in particular, has produced useful information by exploring the spatial dimension of coverage data. Less known, however, is the fact that these surveys have also been key in enhancing our understanding of the reasons for non-attendance, or the barriers to access that hinder higher programme coverage.

Over the last few months, data from questionnaires conducted as part of CSAS surveys have been collected and analysed. The analysis has been conducted by Valid International, with support from Concern Worldwide, with data from CTC programmes implemented by agencies such as Save the Children-UK, Save the Children-US, Concern Worldwide, Merlin, GOAL, COOPI, World Vision, International Medical Corps, and UNICEF as well as Ministries of Health. This comparative analysis, across different programmes and countries (Ethiopia, Sudan, Malawi, Niger, Kenya, Burundi and Democratic Republic of the Congo), has started to reveal clear trends in health seeking behaviours and programme attendance. The most important result has been the importance of carers' first experience with a community-based programme in determining their subsequent willingness to re-visit the sites, either voluntarily or when referred. Results show that one in every three malnourished children not enrolled in CTC programmes have refused to go following a negative experience of rejection at an earlier date.

This article discusses the role of qualitative analysis in identifying the impact of rejection before describing some of the processes involved in rejection, and its transformation from a routine part of screening and referrals into one of the primary barriers to access. The article concludes by calling for 'rejection' to be addressed proactively in order to ensure optimal programme coverage.

Access and the Importance of Coverage in (Emergency) Nutrition Programming

Access to emergency nutrition programming is a multidimensional problem, which involves issues as pragmatic as distance between communities and programme sites, to the more subtle (but equally influential) aspects of awareness, local perceptions, acceptability of the bio-medical approaches and socio-cultural norms and taboos. The identification of 'a barrier to access' has been an integral part of CTC programming since its early days. Initially, 'barriers to access' were mostly identified qualitatively - through informal dialogue with programme staff, local leaders and carers. The informal analysis rapidly grew into more concerted and organised efforts, such as rapid socio-cultural assessments (often referred to as 'anthropological studies'), to identify barriers to access. These assessments began to shed light on some of the commonalities that affected CTC programmes intra and inter-nationally. For the first time, cross-cultural examination of these barriers became possible.

This more formal qualitative analysis was instrumental in the identification of trends in community perceptions and responses to CTC programmes. Awareness about the programme, treatment at the sites, local perceptions of malnutrition, acceptable forms of treatment (vis-à-vis CTC services), distance to the sites, and rejection were all identified as qualitative factors influencing CTC programme performance long before their quantitative impact on programme indicators was known.

The introduction of CSAS coverage surveys was partly a reflection of the need to know how efficiently barriers to access were being addressed by the new community-based model. Coverage thus became one of the primary measures of programme success.

CSAS offered the first quantitative look into the precise impact of rejection on programmes. Since 2004, CSAS surveys have included a questionnaire survey to be conducted with carers of severely malnourished children not enrolled in the programme. The survey aims to identify common barriers to access, so as to inform mobilisation activities. The surveys have gone through a process of iterative change, so as to create a template for widespread use that also allows context-specific variations to be adequately represented. The standardisation of the questionnaires has allowed for comparative analysis between the programmes - for trends to emerge, and for issues that were known to be crucial in ensuring success in particular programmes to be substantiated with evidence from different countries and different contexts. In this new exploration of issues behind coverage, no other issue has proven to be as significant as previous rejection of a child from the programme. Understanding the elements that contribute to rejection and its actual impact on programme performance is crucial in the required efforts to curb its negative impact on coverage.

How Rejection Comes About: Factors that Increase or Decrease Rejection

The issue of rejection is closely linked to the ways in which communities get to know about the programme and are encouraged to seek help. In CTC programmes, there are three different ways in which this can happen; community sensitisation; active case-finding, and informal communication through word of mouth and self-referrals. Each of these three channels helps ensure high admissions, yet the way in which they are managed and organised determines whether the rates of rejection are high or low.

Optimal community sensitisation, for example, focuses on the use of concise and clear messages about the target population - using context-specific descriptions that communities can understand. Although people will try their luck, the clearer the sensitisation process is, the higher the rate of eligible children that will turn up at the sites (and the lower the rejection rate). Low levels of inappropriate attendance, also ensures that programme staff have time to explain why a child is being rejected, and clarify that the child can return if their condition deteriorates. Conversely, mass sensitisation processes - aimed at attracting all children for screening - may be tempting in emergency situations with high mortality rates. Yet, mass sensitisation and screenings raises unrealistic expectations. It also leads to high levels of rejection, whilst reducing the time available to programme staff to explain clearly the potential eligibility of the child at a later date.

Active case-finding also has the potential of reducing the number of non-eligible children turning up at the sites. However, until recently the use of Middle-Upper Arm Circumference (MUAC) as a referral criteria and Weight for Height (WfH) as admission criteria meant that many referred children (particularly younger children at high mortality risk) were turned away at the sites. The eligibility of a child on the basis of one and not the other is confusing to carers, and demands closer attention on the part of programme staff. Explaining the difference has consistently proved to be problematic and unsatisfactory, thus accounting for much of the frustration and 'negative feedback' created.

Informal communication ('word of mouth') has also proven to be one of the most important vectors for the exchange of ideas about programme activities. Its impact, however, is equally dependent on the experiences of community members with the programme. 'Word of mouth' is a double-edged sword - a 'good' programme will have positive 'word of mouth', while a 'bad' programme will have negative 'word of mouth'. The admission and rapid recovery of children on Ready-to-use Therapeutic Food (RUTF), for example, is a powerful motivator for people to seek assistance. Rejection, on the other hand, has proven to be just as powerful in discouraging community members from accessing programme services. In Niger, for example, perceptions that the programme rejected large numbers of children 30 led to 'fear of rejection' as one of the primary reasons for the non-attendance of malnourished children. In other programmes, the rejection of family members or neighbours has also become manifest in programme coverage. The precise impact of negative feedback in a community varies, but as the following section reveals, this is sufficiently important to warrant close attention by programme implementers.

The Impact of Rejection on Programme Coverage

The first series of analysis was based on 14 questionnaires used in an equal number of CTC programmes across seven countries (Ethiopia, Sudan, Malawi, Niger, Kenya, Burundi, and Democratic Republic of Congo). The results show a series of factors that affect programme coverage including distance to sites, knowledge about the programme and perceptions of the child's health. More significantly, in terms of frequency and impact, is previous rejection of children from the programme. In virtually all the programmes surveyed, mothers of malnourished children who have been previously turned away from the sites (either due to improper anthropometric readings, or failure to meet the criteria at the time) consistently refuse to take their children for subsequent screening. On average, previous rejection accounts for 1 in every 3 malnourished children not attending the programme. This means that the issue of rejection is responsible for a decrease of over 35% of programme coverage in the sample programmes surveyed.

The issue of rejection has wider repercussions in the communities. Rejection of a 'known' child (of the same family and/or community) also impacts on programme coverage. In five of the 14 programmes surveyed, rejection of a known child decreased programme coverage by an average of 5%. In these programmes, the combined rejection of a child and a known child reduced coverage by 42.23%.

Rejection and non-admittance also has an equally negative effect on community mobilisation activities. Case-finding and sensitisation very often relies on trust - trust in the volunteers responsible for identifying and referring cases, and in the community figures that mobilise communities to seek care. Whilst the admission and rapid recovery of children in the programme serves to strengthen the trust in these actors, rejection and lack of understanding about the reasons for rejection serves to erode the trust, and in many cases, alienate these actors from the communities in which they work and live. This in turn de-motivates workers and creates resentment which very often manifests itself in the form of decreased referrals or a complete cessation of case-finding activities in some areas. This means that children may only turn up late at the sites thus negating the advantages of early treatment that allows the bulk of cases to be treated in Outpatient Therapeutic Programmes (OTP) rather than stabilisation centres.

Addressing the Issue of Rejection

Rejection and the discontent often associated with it will always play a part in nutrition programmes. Limiting or reducing its effects on programme performance, however, is possible. This requires, above all, recognition of the importance of rejection (and all factors associated with it) on programme performance, and a commitment to implementing the necessary steps to curb its impact. Whilst the required steps are likely to vary from context to context, there are three fundamental steps that have proven to help address the incidence and impact of rejection.

Standardising referral and admission criteria

MUAC has been used as referral criteria in CTC programmes for some time. Yet, only recently has it also been introduced as admission criteria. The effects of this dual use have been positive - leading to a reduction in the numbers of children turning up at the sites inappropriately, and an increase in the proportional enrolment of those who do arrive.

Queing at the OTP in Dowa, Malawi

Explaining admission and rejection to carers

Anthropometric errors will continue to lead to 'false positives' presenting at the sites. The decrease in the overall numbers of children attending the sites would allow programme staff to dedicate time to the crucial task of explaining the reasons for rejection. Furthermore, the ability of carers to return to sites for further screening (e.g. if the child's condition deteriorates) must also be part of this process.

Monitoring community perceptions

At a community level, mobilisation workers need to constantly monitor community attitudes towards the programme, so as to identify negative feedback at an early stage. When discontent and fear of rejection manifest themselves and start to hinder carer's compliance with referrals, community outreach workers must devote time to explaining the reasons for rejection and the risks associated with non-compliance. The role of community leaders in restoring trust in the programme has also proven to be critical.

For further information, contact Saul Guerrero, email: saul@validinternational.org