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Developing a Research Agenda for Cultural Competence in Health Care:
Family/Community Inclusion in Health Care Delivery
Draft research agenda--version 1.0

Resources for Cross Cultural Health Care
and the U.S. Department of Health and Human Services
Office of Minority Health and the Agency for Healthcare Research and Quality

We invite public input on our draft research agendas. Please read the following document and send your comments to rcchc@aol.com. We are especially looking for recommendations for additional research questions and methodological/policy considerations. We are also seeking additional bibliographic references for the literature review abstracts. Comments received by December 10 will be incorporated into the final report–comments will also be posted online.

Definition

Family/community inclusion refers to the participation of family members/entities or community-based networks in the development, implementation and decision-making processes of health care delivery. The underlying assumption supporting inclusion is that through participation, individuals and networks can act as agents of change to facilitate improved social, behavioral and health outcomes in individuals more effectively than a systems-based approach exclusively. Through the process of inclusion, essential culturally based issues affecting service delivery and utilization can be examined and integrated into more responsive approaches.

Synthesis Of Findings From Current Literature

Research examining the impact of family/community inclusion took two distinct approaches; inclusion related to clinical encounters and community involvement in the planning, design and implementation of programs and research. Studies described a variety of mechanisms for involving community members in the development of different organizational supports for culturally competent activities (clinical training, survey design, health promotion program design, and developing community profiles). The authors conclude that inclusion:

• Increased screening rates,
• Assisted medical providers in overcoming challenges in caring for elder patients.
• Positively influenced the participation of individuals in training programs,
• Assured the cultural acceptability of research tools leading to higher response rates and increased access to information about the community,

Literature Search Terms

Cross-cultural linkages, consumer input, consumer feedback, consumer participation, planning, consumer rights education, media, radio, family input, family involvement, community planning, community intervention, community representation, family.  

Key Research Questions

The RAC suggested a need to further define and isolate specific aspects of both family inclusion and community participation, to include an identification of existing models to determine the purpose and extent of inclusion, and whether models warranting duplication exist. Before a determination can be made justifying the use of inclusion as an intervention, efforts need to be made to understand the mechanisms of family and community involvement, how these mechanisms subsequently impact health encounters and practices, and whether the effects of inclusion can be isolated from other confounding variables in order to be linked to measurable outcomes.

Characteristics of family inclusion in the health care encounter: Questions designed to isolate and identify characteristics of family inclusion in the health care setting would yield a more comprehensive understanding of the value of inclusion as a culturally competent intervention. Desirable outcomes would include greater exchange clinically/psycho-socially relevant information between the patient/family and the clinician, better retention of information from a health encounter, higher satisfaction with the encounter/clinician, and better adherence to recommended treatment.

1. What methods can be used to determine whether inclusion is appropriate in a particular medical encounter, to what extent, and in what capacity should family members be involved?
2. What positive and negative elements of provider-patient-family interaction can be identified? What is the best way to teach providers to facilitate the inclusion of all parties without over-extending the encounter period?

1. What are the characteristics of "community" that support or facilitate positive social and behavioral outcomes in health programs? Who are the appropriate representatives to involve? What level of involvement should be sought, at what points of the process, and over what period of time?
2. Do specific attributes or mechanisms of community involvement have a measurable effect? What kinds of studies can be designed to measure the impact of community involvement on outcomes?
3. What skills are needed by health planners and providers to successfully recruit community input and integrate that input into health planning and delivery?

Research And Policy Considerations For Further Work In This Area

None noted.

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