1. Role of Bilingual Advocacy in Communication
Bilingual Health Advocates help bridge the gap of inequality and power
Between patients & service providers.
Throughout the United Kingdom there are a number of workers employed, on a paid or unpaid basis to provide a link between health professionals and patients who, for various reasons, encounter barriers in accessing public services, notably health and social care. These workers have a number of different titles, “Linkworkers” and “Bilingual Health Advocates” being perhaps the commonest.
Historically, the concept of having someone to act as the patient’s advocate began in the United States of America in 1950’s and 1960’s, primarily for disabled people, people with learning difficulties and mentally ill people. In the UK, the first patient advocates were for similar groups, with the addition of older people as a care group for whom advocacy workers were employed.
Early 1980s saw the emergence of the concept and practice of Bilingual advocacy which catered for people from minority ethnic communities and who speak different languages and have different cultural traditions than the service providers. The practice started in maternity services in hospitals and in 1987, it was transferred to primary care and other community based services.
Bilingual advocacy = Interpreting?
Interpreters and translators have existed for centuries, but Bilingual Advocacy is a relatively new practice that is in the process of being recognised as a ‘profession’ in its own right. Bilingual Linkworkers/ advocates, interpreters, community interpreters and translators are all titles for bilingual workers who are most commonly employed for providing language support to the users (both from the minority ethnic communities and from the health and social care agencies).
Although these terms are used interchangeably as all these workers are employed to overcome the so-called “language and cultural barriers”, they differ from each other substantially, both in the ways they operate and in the way they address the issues. Furthermore, as is the case with most new and developing concepts, these terms and practices are not always understood and applied in the same way by the different parties involved, e.g. both the community members and providers of health and social care services. Discussions and debates are continuing in different relevant circles to clarify these concepts and their definitions in relation to bilingual communication. As yet, these discussions have not resulted in a common understanding of the terms, but they have nevertheless helped to highlight some of the complexities of the issues involved. This is to be expected when dealing with such dynamic concepts the use and understanding of which very much changes by whoever uses them and for what purpose.
As a rule interpreters work to a defined brief restricted to language support and cannot interfere beyond it, especially when they experience or observe discrimination towards their clients or communities.
A bilingual advocate, however, works to a brief that makes it possible for them to negotiate on behalf of, but in partnership with, their clients, and challenge discrimination if/when needed. Advocates can act independently of the clinical providers and as such, they are accountable, first and foremost, to their clients and communities. This level of quality intervention brings the health professionals and their patients to an equal level where they can negotiate the available options and outcomes of care for the patient.
The Roles of an Advocate:
Bilingual Health Advocates are trained professionals who
- Act on behalf of their patients and help them to communicate their needs to health and social care providers;
- Help service providers to understand fully the symptoms that patients express;
- Facilitate linguistic and cultural communications;
- Inform patients of services and choices available;
- Work with individual patients or groups of patients;
- Assist with promoting good health and well-being.
Bilingual Health Advocates carry out their role in a number of ways such as by:
- Educating health care staff about their culture and background, the socio-economic conditions and the health care needs of their patients and communities,
- Supporting patients within consultations through interpreting and explaining what is taking place and why,
- Informing patients about possible choices for the management of their condition,
- Encouraging their patients to ask questions and ensuring that their needs and concerns are dealt with,
- Informing patients about their rights within the system and its institutions,
- Challenging practices within the system which discriminate against their client group, by challenging institutional racism or, indeed, racist attitudes and practices by individuals,
- Helping to change and improve the services and systems through consistent and open feed-back from the patients and their communities.
Principles of advocacy
Although still in the process of being worked out in a systematic way, experience has shown that there are a number of principles underpinning the provision of advocacy services. The principles of advocacy within health care are somewhat similar to those in legal settings – basically, advocates are there to represent the patient’s interests to the health service. So, being a “patient-centred” or “patient-led”, non-judgemental; and confidential service, independently set up and managed from the care providers and accountable to the patients and their communities are some of the key principles of advocacy. These principles, together with the accessibility and availability of the service, training and support of staff and involving the users in the development of services form the basis of Advocacy Service Standards necessary to establish and maintain high quality advocacy services.
Models of working
As the local conditions and patient profiles change from one locality to the other, there is no one model that would be applicable to all settings in all localities. The main models of providing advocacy services within health care settings are:
a. Locally based services: Personal, face to face advocacy services provided from a local site, be it in the hospital, health centre or a local office/base. Advantages are: familiarity with the service and service providers as well as with the local communities and agencies - good for appropriate referrals to local networks/agencies for additional support, on-call during office hours, easily accessible and readily available, particularly in emergencies, outreach/support at home when needed.
b. Dedicated sessions: These are regular (usually weekly) sessions where advocacy is provided on a regular basis from one service site for a specific group of patients. They are pre-arranged for mutual convenience and can be on or off-site, i.e. in community centres, mosques, patients’ homes etc. If organised well, they can be extremely cost-effective in that valuable time and resources (beds, medicines, test materials etc) are saved by clinicians and patients communicating effectively.
c. Specialist services: These are sessions where advocacy support is provided for a specific service. The advocates are based within the service (e.g. maternity, cardiology, TB or diabetes clinics) and work only with the users and providers of that specialist service. This gives them a good working knowledge of specialist terminology and familiarity with the services, helps to establish trust between themselves and users (both community members and providers of health services), and also establishes a continuity of service for them. In different specialist set ups, the role of the advocate may change focus to have a:
- Health management function (e.g. Maternity, Cardiology, TB, Diabetes)
- "Counselling" and support function (e.g. HIV/AIDS or Haemoglobinopathies) or
- Very specialist function as in Mental Health settings.
Service specifications should reflect the specialist requirements of these different functions and settings where services will be provided.
Conclusion:
Providing a valuable and much needed advocacy service that truly acts on behalf of and in partnership with patients to improve their health and access to health care presents numerous challenges, both at individual and organisational levels. Nevertheless, when someone is faced by a large, complex organisation where the quality of care is variable, advocacy is a very important role. Where the patient and health care professional do not speak the same language, bilingual advocacy is essential - if patient care is to be more than guesswork and valuable resources to be saved. For both the health professional and the patient, the presence of an advocate not only provides interpreting, but assistance with more subtle areas of possible conflict, and support and help when dealing with them.
Akgul Baylav