What to know
The CACHÉ program stresses that all aspects of community engagement must recognize and respect community diversity. This program cautions that an engaging organization must be prepared to release control of actions or interventions to the community. One must be flexible enough to meet the changing needs of that community.
Background
In 2002, the National Institute of Child Health and Human Development (NICHD) began funding a five-site Community Child Health Network (CCHN). Their goal was to examine how community, family, and individual factors interact with biological causes to result in health disparities. Specifically, they wanted to focus on health disparities in perinatal outcomes and in mortality and morbidity during infancy and early childhood.
A large national cohort of families was recruited at the time of delivery. Oversampling was done among African American and Latina women, women with preterm births, and low-income families. The investigators periodically assessed mothers and fathers, measuring individual, family, community, and institutional stressors as well as resilience factors. The three-phase study was designed to
- Develop academic-community partnerships and pilot studies;
- Conduct a longitudinal observational study to identify the pathways that lead to the disparities of interest. This would be informed by the initial developmental work; and
- Field a systematic study of sustainable interventions to eliminate these disparities, again informed by the observational study.
At the time of publication, Phase 1 had been completed and Phase 2, also funded by NICHD, was under way.
CACHÉ is a partnership between the NorthShore Research Institute Section for Child and Family Health Studies and the Lake County Health Department/Community Health Center Women’s Health Services. CACHÉ is a CCHN site in Lake County, located north of Chicago. During Phase 1, the county had 702,682 residents, comprising a diverse mix of individuals from varied races, ethnicities, and socioeconomic status. Even though Lake County had low unemployment between 2000 and 2005, 7.1% of the residents lived below the poverty line (Illinois Poverty Summit, 2005).
Methods
Community-based participatory research (CBPR) approaches were used for this study. Following a kickoff meeting, 27 community leaders volunteered to participate in a community advisory committee (CAC). This CAC still shares in all program decision making. Interviews with these leaders were analyzed and findings shared with the CAC.
Results
This initial process allowed the community members to come to a consensus about the issues facing the Lake County families. Academic researchers and the community created a vision and a mission statement for CACHÉ written in the language of the CAC. As CACHÉ transitioned from Phase 1 to Phase 2, the sustainability of the CAC was addressed. This was done through an open-door policy for CAC members. Each member was asked to bring whoever they thought was “missing at the table” for the next meeting.
Community advisors informed academics that collecting saliva or whole blood spots from men in the community would be viewed suspiciously. This advice was given, at the national level, because of this populations' legacy of distrust and concerns regarding confidentiality.
In contrast, CACHÉ CAC members insisted that all clinically relevant testing be offered to fathers and mothers with adequate explanation. They needed to explain what the reason was for testing. The CAC members also insisted that clinical outreach and referral be offered in cases of abnormal findings. CACHÉ found additional funding from a foundation to pay for biospecimen collection from fathers. The funding was also used for a clinical tracking system and a part-time clinical social worker to provide triage and referrals.
One challenge to a long-term relationship between academic researchers and community organizations is the perception of unequal funding. Some may believe that the academic team has an unfair advantage in writing grants to obtain scarce funds from local foundations. CACHÉ attempts to overcome this challenge by offering technical assistance for preparing submissions for foundation grants. This is offered to any agency that belongs to its collective.
Comments
Community wisdom moved CACHÉ to be highly innovative in the research process and to address local needs. This is evidenced by CACHÉ's collection of father's biospecimens and CACHÉ's real-time communication of clinically relevant research findings to participants.
Applications of Principles of Community Engagement
Many of the principles of community engagement were exemplified during the initial development phase of CACHÉ. This was due to the decisions and the decision-making roles that community members and academic members assumed during this time.
The decision to form a partnership with the community by creating a CAC was in line with Principles 1–5. The CAC shared in the process of creating a mission statement, and the collaboration continued throughout this long-term program (Principle 9).
One unique aspect of CACHÉ is its insistence that goals be consistent with CCHN objectives but be modified for local conditions.
Against the advice of CCHN, but in response to the needs of Lake County, the CACHÉ program collected biospecimens. This choice embodies Principle 6, which stresses that all aspects of community engagement must recognize and respect community diversity. The collection of the biospecimens also exemplifies Principle 8. This principle cautions that an engaging organization must be prepared to release control of actions or interventions to the community. It also states that an organization must be flexible enough to meet the changing needs of that community.
Finally, CACHÉ responding constructively to perceptions that the academic team had an unfair advantage in writing grants, followed Principle 2. It states, the initiator of community engagement, in this case, researchers, must become knowledgeable about the community's experience with engagement efforts. The initiator must also learn about the community's perceptions of those initiating the engagement activities.
References
Illinois Poverty Summit. 2005 report on Illinois poverty. 2005. Retrieved Mar 25, 2010, from https://www.scribd.com/document/63468902/Illinois-Poverty-Report-2005.
Shalowitz M, Isacco A, Barquin N, Clark-Kauffman E, Delger P, Nelson D, et al. Community-based participatory research: a review of the literature with strategies for community engagement. Journal of Developmental and Behavioral Pediatrics 2009;30(4):350-361.
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