Contribution to the Annual Report 2015 of the MMI Network

Health Poverty Action has 30 years of experience in working to improve the health of marginalised groups. We consistently find that cultural barriers provide a fundamental obstruction to accessing health services, and consequently realising the right to health. As a response, we have developed particular expertise in the provision of culturally appropriate health systems.We work with groups including indigenous people in Latin America, ethnic minorities in Asia, and mobile pastoralists in the Horn of Africa.

We advocate an approach that recognises that traditional and Western medical professionals have much to learn from each other.By bringing expertise together in a spirit of mutual respect, solutions can be developed which work with the grain of indigenous cultures. Our programmes demonstrate the value of these simple but effective approaches, rooted in local community experience.

In our contribution we provide practical examples from our own experience of addressing the barriers to health faced by the minority groups that we work with. Drawing on these, we present key lessons and suggest some key principles that can be incorporated into the design and delivery health systems, in order to meet the needs of marginalized groups and help realise the primary commitment of the SDGs to Leave No One Behind.

Critically, we maintain that the disaggregation of data by ethnicity is fundamental in order to expose the barriers faced by minority groups, in order that these can be addressed.

Addressing cultural barriers to health – the rationale

Women from minority groups face multiple and intersecting forms of discrimination. These compound, and are in turn heightened by other forms of exclusion such as poverty, isolation and low levels of education.Recent research by the Overseas Development Institute ODI (1) found ethnicity is a key marker of social exclusion. Their findings include:

  • In Guatemala the chances of being poor are up to 2.6 times higher for indigenous households compared with non-indigenous ones.
  • In Vietnam, in relative terms the probability of child deathfor ethnic minorities was 1.5 times that of the ethnic majority in 2006, which increased to 1.8 times in 2011
  • In Nigeria the Fulani are eight times less likely than Yoruba to have access to sanitation, three times less likely to have had a substantial education and more than twice as likely to belong to the bottom wealth quintile.

Cultural barriers to healthcare can mean women dying in childbirth at home rather than using a system that is completely foreign to them and their practices.

 

Barriers to accessible health services

Mainstream health services may be inaccessible to minority groups for a range of reasons. Ethnic minorities face practical barriers to development. They are more likely to live in the most remote places, lack transport and have higher rates of poverty than mainstream groups.(2) These practical barriers are compounded by cultural ones. These include:

Language: Minority groups often have a different first language to that of the mainstream population. Failure to accommodate this presents key barriers to health education, building trust and communicating with health staff, and accessing health information, particularly on sensitive topics.

Discrimination. Many minority groups report being discriminated against patronised or treated harshly by health workers when engaging with health services.

“I’d be happy to give birth in hospital if it weren’t for the way they talk to us”
Indigenous community member, Nicaragua

Alternative concepts of health: Many indigenous communities have a different concept of health to mainstream social groups. Often this does not focus on the individual, but is a holistic concept which encompasses the collective well-being of their community and ecosystem. This leads to alternative approaches to dealing with illness.Many indigenous communities will initially seek traditional healing, before ‘other’ (western) treatment when advised to by a healer. Often a pragmatic combination of traditional and ‘western’ approaches to health and well-being is used.

Inappropriate services: These are a significant obstacles to improving the maternal health of indigenous women. For example, Mayan women in Guatemala, and other indigenous women in Latin America, usually give birth in a crouching position. The woman supports herself with a rope strung from the rafters or in the arms of her spouse. Instead of painkillers, a woman is also helped by putting her braided hair between her teeth and biting down on it.Attending health clinics which refuse to accommodate these practices and instead force women to adapt to mainstream practices such as wearing hospital gowns, giving birth lying down, and involving male doctors.These – in conjunction with issues of language and discrimination – can make giving birth a frightening and humiliating experience for many women. Further, the lack of recognition of Traditional Birth Attendants (TBAs) – a pivotal role which in many communities goes far beyond antenatal and delivery care – and poor cooperation between health authorities and and TBAs can make many women reluctant to attend health services.

Migration: Mobile and migrant populations are often composed of different ethnic groups and a mix of various minority and majority groups. Migratory status is by nature transient. A group which would be the mainstream ethnic group in their area of origin becomes a minority group as a result of the migratory activity. Such groups require specific approaches are on the basis of their migrant status at a given time.

Lack of participation: A key reason for the above barriers is the systematic exclusion of minority groups in the design and delivery of health systems.

 

Addressing barriers and providing appropriate healthcare – key principles

Health Poverty Action believes the following key principles are fundamental when designing appropriate health services.This is not intended to be an exhaustive list, but based on our experience, are key considerations which we believe should inform the design and delivery of health systems in order to meet the needs of marginalised communities, and deliver the commitment to Leave No One Behind. These are:

Enabling participation and community feedback: The inclusion of marginalised communities in the design, delivery and development of services is vital.This can be incorporated in a variety of ways. One method we have found useful to facilitate this is thorough participatory methods such as community conversations – a transformational participatory methodology which engages diverse members of communities in interactive discussions to consider sensitive issues. The method draws the community’s attention and focus to the issue, and facilitates exchange of various views.Other examples we have effectively used include establishing specific feedback mechanisms, such as Village Health Support Groups or community health committees to collate feedback from communities and act as a formal liaison between communities and health authorities. We are also currently running a client satisfaction software system in Peru and are piloting a mechanism in Somaliland to enable patients to give feedback via toll free phone number.

In Peru, Health Poverty Action developed SUMACC (‘System to Measure Quality of Attention’, in Spanish), an innovative client satisfaction software system.This is designed to help health centres to develop plans that directly respond to the indigenous populations’ demands.The software allows users to cross variables; view results in PDF or Microsoft Word format, and generate satisfaction index reports and general reports from the information gleaned from interviews with health workers and key informants. The system was validated in a trial in three district health facilities in Ayacucho, Peru, and, as a result of its success, was then formally adopted by the regional government for implementation at a regional level. SUMACC has been shown to be highly valued as a direct and sustainable contribution to the improvement of health services; it was found that the vast majority of health centres with access to SUMACC had used the system to create and implement a plan for improvement of services in line with the feedback they received. These improvements have included the posting of timetables for health staff, explanations of services, and flow chart pregnant women can use to understand which health centre to attend for exams and birth.

Appropriate communication: The provision of health information and education material in relevant languages is essential both to ensure information is understood and to establish trust and openness, especially with regard to the discussion of sensitive health issues. Where communities have oral traditions, health information using pictorial material may be relevant alongside other means of transmitting health messages, such as drama, songs and radio.

In 1999 Health Poverty Action set up and supported an independent local organisation to produce and broadcast Urunana (‘Hand in Hand’), a radio soap opera in Rwanda and parts of Burundi.The show tackles subjects such as HIV/AIDS, family planning, domestic and sexual violence – issues that were previously considered taboo. It has proved hugely popular, bringing health information to an estimated audience of 10 million people each week and the show’s actors have attracted cult status nationally. 74% of Rwanda’s population regularly tune in to the twice weekly episodes and 36% now use the radio as their main source of health information.(3) Our partner Urunana Development Communication now functions autonomously, raising its own funds and producing programmes.

Culturally appropriate services: HPA has piloted and advocated for health systems that combine modern medicine with positive local practices, especially with regard to birthing.This can include adapting existing health services to incorporate appropriate elements of indigenous cultural and spiritual beliefs; introducing key interlocutors such as such as traditional birth attendants to assist with births; or, in some cases the provision of complementary services, for example birth waiting homes (see case study below).

Forging links between communities and formal services: This as an important part of building trust between communities and health services and encouraging referrals. It can involve working with interlocutors who are trusted by communities and can play a key role in engaging both with communities and health services.

“TBAs can see problems from the health centre staff and villagers points of view”. Midwife at San Dek Chas health clinic, Cambodia

In many places we have found that Traditional Birth Attendants (TBAs) are ideally placed to fill this role.TBAs play a key a major role in maternal health across the world. Their longstanding role and status in communities mean they are present in remote locations, respected by the people they serve and provide important practical and emotional support for women. The WHO recommends collaboration between skilled birth attendants and TBAs in order to provide an ‘unbroken chain of care between the community and the health system’ as an interim step of a longer-term plan for training and providing sufficient skilled attendants (4).We have found that training and supporting TBAs to work as ‘link workers’ between health facilities and women in communities can be a highly successful way of bridging the gaps with formal health services (see case studies below).

Monitoring and data disaggregation: Ensuring people are not left behind requires appropriate indicators for measurement.Coverage indicators are typically easy to measure but do not tell us who is utilising the services.For example, coverage could be achieved, whilst the range of barriers that prevent marginalised groups from using health services remain. Indicators that measure utilisation rather than coverage can be a more meaningful indicator of the efficacy of a health system.Assessing whether services are reaching marginalised groups requires measuring availability and quality of services, in conjunction with the barriers to accessing health services and health outcomes.These must be appropriately disaggregated.

Disaggregating data by the full range of social and economic groups is essential in realising the core commitment of the SDGs to Leave No One Behind. In particular we find that data disaggregated by ethnicity is vital in tracking those missed out by health services. Whilst this is often presented as a technical challenge, much of the data or methods for disaggregating by ethnicity already exist. Household surveys, Demographic Health Surveys (DHS) and Multiple Indicator Cluster Surveys (MICS) all provide the option to include questions on ethnicity or to use proxy measures such as religion or language where relevant – it just requires that they are utilised.

There are also existing examples of good practice in data disaggregation that can be built upon. For example, in Nicaragua forms for outpatient information capture ethnicity. In the RACCN this is analysed and used to research and monitor the health outcomes of different ethnic groups.Lessons can be learnt from these experiences such as these.

One clear barrier is the absence of incentives to disaggregate due to a lack of demand by national or donor governments.Donors and national governments can provide a strong incentive for data disaggregation at all levels by requesting it as standard across implementation of the SDGs.

Despite the commitment of the SDGS to disaggregate data by a wide range of social groups outlined in target 17.18 and para 74g of Agenda 2030, we have grave concerns that the proposed indicator framework wholly undermines this, and consequently the commitment the Leave No One Behind. Please see the briefing by Health Poverty Action and Minority Rights Group, “Disaggregation by ethnicity: protecting the commitment to Leave No One Behind”, for further details on data disaggregation.

 

Recommendations

We recommend that the above key elements: enabling participation and community feedback; appropriate communication; culturallyappropriate services ; forging links between communities andformal services; and monitoring and data disaggregation can offer lessons and key consideration when working with marginalised groups, and suggest these are systematically consideredin the design and delivery of all health programmes. In addition donors should:

  • Disaggregate data by ethnicity across all programmes
  • Systematically request and support all ODA recipients to report results disaggregated by ethnicity as well as other marginalisation factors.
  • Within the current UN led indicator discussions, push to amend indicator 10.2.1 to include all disaggregation factors listed in the state agreed target.
  • Insist that disaggregation of data by all social groups outlined in Para 74g and target 17.18 of Agenda 2030 applies across the entire indicator set both at the global and national levels.

…………………….

  • Footnotes:
    (1) Overseas Development Institute, 2016, http://bit.ly/20Ro8mO
    (2) NDP and Indigenous Peoples, (accessed 01/04/2016), http://bit.ly/1MZxOGy
    (3) http://bit.ly/1VNHfyS
    4) Making pregnancy safer: the critical role of the skilled attendant, A joint statement by WHO, ICM and FIGO, 2004 http://bit.ly/1pxE8N4

Contribution by Health Poverty Action to the Annual Report 2015 of the MMI Network