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Step 1 - Community engagement

Community engagement

Cultural competence in:

Cultural competence in community engagement

Community consultation

“Community and participant consultations involve an ongoing reciprocal and respectful dialogue among scientists, prospective participants, their families, and other community stakeholders. This dialogue is aimed at strengthening scientific merit and responsibility during research design, implementation, and dissemination” (Fisher et al. 2002;Fisher & Wallace 2000).

“In some communities, this may require that researchers establish a relationship with the community long before the study is commenced. This relationship can inform the study’s goals and aims and engage community members as true collaborators. Consultation is not a means of obtaining blind acceptance of an already worked-out protocol. Respectful and successful community and participant consultation often depends on relationships of trust that are established early in the research design phase and are continued through the data interpretation, implementation, and dissemination phases. When a substantial number of participants and community representatives indicate concern about the balance of risks and benefits, recruitment or informed consent procedures, confidentiality policies, research compensation, or dissemination plans for a proposed project, investigators should work to modify these procedures to best meet the standards of scientific rigor and participant protection” (Fisher, Hoagwood, Boyce, Duster, Frank, Grisso, Levine, Macklin, Spencer, Takanishi, Trimble, & Zayas 2002;Fisher & Wallace 2000).

Establishing mutual understanding about research

The interpretative relationships between research, the potential participant and the researcher are tenuous at the best of times, let alone when linguistic and cultural differences are brought into play. A key issue is that consent should be ‘meaningful’, such that participants can be said with confidence to have ‘grasped the nature of what they are consenting to’ beyond some critical threshold, even though ‘it is probable that no two patients consent or refuse for the same set of reasons’. (Ashcroft et al. 1997p. 32).

One important concern when obtaining informed consent in an ethical manner across-cultures, Ashcroft et al. suggest, is that a single factor underlying misunderstanding linguistically or conceptually can lead to a whole cultural group being enrolled or excluded unethically  - group discrimination, in other words.

Moreover, issues around a person or group’s refusal to take part in a study take on new ethical complexities when the refusal is of a cultural nature. Ashcroft et al. divide ‘cultural refusals’ (and culture is used here in its broadest sense) into two kinds, conditional and absolute. A conditional refusal might be exemplified by a Jehovah’s Witness who considers any study involving blood transfusion as unethical only insofar as Jehovah’s Witnesses might be taking part. Conditional refusals might refer to the ‘topic’ of the study (the procedure involved) or the design itself (e.g. a randomized control trial might be interpreted as gambling, a practice frowned on for followers of some religious codes). Absolute refusal, on the other hand, might arise from a religious perspective that holds a given procedure to be contrary to natural or divine law and therefore unethical for anyone to be involved with, regardless of their religious or cultural background. The moral difference between these two types of refusal is, of course, that while a conditional refusal refers to the participant’s decision not to take part in a given study, an absolute refusal questions the ethics of the study taking place at all.

“Research ethics committees should take note of the needs and values of religious traditions in their area, preferably by representation but otherwise by recognizing the traditions as expert advisors” (Ashcroft, Chadwick, Clark, Edwards, Frith, & Hutton 1997 p. 45).

Measurement of levels of community participation as indicators of the ‘goodness-of-fit’ between a health program and the local culture

‘A social process whereby specific groups with shared needs living in a defined geographic area actively pursue identication of their needs, take decisions and establish mechanisms to meet those needs (Rifkin et al, 1988).

Rifkin put forward a framework for measuring the level of community participation in a specific health program, and comprising five dimensions

Needs assessment

Leadership

Organisation

Resource mobilisation

Management

For each dimension, process indicators are defined for participation in health programs (Indicators focus on breadth and depth of participation rather than on health or social impact).