Social Networks, Culture, and Chronic Illness Management
Mary P. Gallant and Glenna Spitze
a. Specific Aims
African American and Latino older adults shoulder a disproportionate burden from chronic illnesses, such as diabetes, arthritis, and heart disease. Many of these illnesses have a significant self-management component, including regimens of medication-taking, physical activity, dietary and weight management, and specific disease-related behaviors. Substantial evidence demonstrates that successful self-management of chronic illness is related to better overall physical and psychological health outcomes. The social environment is an important influence on self-management behavior, yet little is known about the social context of chronic illness management, particularly among older minority populations.
The original objective of this pilot study was to examine the influence of family members and friends on chronic illness management behaviors among Latino and African American adults, with a special emphasis on exploring cultural factors. Our long-term goal is to design and evaluate a self-management intervention. The pilot study had the following specific aims:
Develop a collaborative team of University at Albany researchers (Gallant, Spitze) and members of selected African American and Latino communities, including representatives of the health care and community services communities;
Conduct a literature review of chronic illness management among Latino and African American populations, and of family and social networks among older Latinos and African Americans.
Define the study population according to disease status (e.g. diabetes, heart disease, etc.) based on the literature review, input from community collaborators and perhaps informal interviews with community members;
Develop a plan for pilot data collection (quantitative and qualitative) that would focus on beliefs and attitudes about chronic illness management, chronic illness management behaviors, social network influences on illness management;
Conduct pilot studies; and
Develop and pilot test an intervention.
Based on our work during this past year (see Section B), the aims of this project have been broadened and modified. We now plan to examine a variety of social influences on self-management behavior among Latino and African American older adults, instead of restricting our focus to family and friends. We are also tentatively planning to spend the third year writing and submitting a proposal for grant funding which will allow us to conduct the final aim (above) on a larger scale with adequate resources.
b. Studies and Results
We have been engaged in three sets of activities to date: conducting a comprehensive literature review of chronic illness self-management and the social networks of Latino and African-American older adults; planning for focus groups; and making contacts with representatives of the Amsterdam and downtown Albany communities.
We are in the process of preparing a comprehensive literature review for publication that will synthesize literature on chronic illness self-management with literature on family and social networks among Latino and African-American older adults. This review is unique in that it brings together two bodies of literature that have not previously been looked at together, and the resulting publication will contribute to knowledge about chronic illness management in minority populations. During the summer of 2005, we employed two part-time graduate research assistants to search the empirical literature on (1) chronic illness self-management among Latino and African-American older adults and (2) social networks among Latino and African-American older adults and categorize the results. Their work resulted in a detailed outline with supporting publications of the relevant work in these two areas that has been published in the last 10 years. We are now in the process (albeit without the help of graduate assistants during the academic year) of reviewing this literature and preparing a manuscript for publication.
We have also been further refining our data collection methodology for this pilot study. In summer 2006, we plan to conduct 6 focus group interviews with adults 55 years old and older with one or more common chronic illness (e.g. diabetes, arthritis, heart disease). Four of these focus groups will be conducted with members of the Latino community in Amsterdam and 2 will be conducted with members of the African-American community in downtown Albany. We plan to conduct more focus groups with Latino individuals because this pilot study builds on an earlier study in which we conducted focus groups with African-American men and women on the same topic, and because the literature review indicates that there is much less known about chronic illness management in Latino populations.
Finally, we have made contacts with representatives of both the Albany and Amsterdam communities to identify individuals who will advise us with respect to our pilot data collection plans, recruitment materials, and who will work with us in recruiting focus group participants. In February 2006 we plan to meet with these community representatives in Amsterdam to learn more about the community and to further refine our data collection plans based on their input and advice.
African American and Latino older adults are disproportionately burdened with chronic illnesses, yet they have lower levels of the socioeconomic resources that might facilitate self-management of those illnesses. Our exploratory research will contribute to an understanding not only of the barriers they perceive in maintaining their health, but also factors in their social network and living environment that may facilitate their self-management. This knowledge can be used to conduct more comprehensive quantitative research in this area as well as to design a self-management intervention for these older persons, potentially involving not only the older persons themselves but also their network members and the health care professionals who serve them.
Our plans for the second year include:
Complete a draft of the synthetic literature review of chronic illness management among Latino and African American populations, and of family and social networks among older Latinos and African Americans;
Continue to make contacts in both the African American and Latino communities and develop a collaborative team that includes health care and community service representatives in both communities;
Plan and carry out (during Summer 2006) six focus group interviews with older men and women with one or more chronic illnesses, two in the African-American community in Albany and four in the Latino community in Amsterdam;
Make plans for transcribing and analyzing focus group data;
Plan for writing and submitting a grant proposal based on this pilot study and our previous work, which will provide adequate funding for our planned intervention.
There are no publications to date. We are in the process of drafting a synthetic literature review that will be submitted for publication.
f. Project-Generated Resources