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Family/Community Inclusion In Health Care Delivery
Literature Review Abstracts

Anonymous.
Department of Social Medicine, Harvard Medical School, Boston, MA 02115, USA.
A Council of Elders: Creating A Multi-Voiced Dialogue in A Community Of Care.
Social Science & Medicine. 50(6):851-60, 2000 Mar.

In an era of 'medical care delivery systems', there is an increasing need for the patient's voice to be heard, for it to be invited, listened to, and taken seriously. This challenge is particularly evident in geriatrics education, a domain of clinical training in which educators and clinicians alike must struggle to overcome adverse attitudes towards the elderly ('ageism'). In this paper we introduce a 'Council of Elders' as an educational innovation in which we invited community elders to function as our 'Senior Faculty', to whom medical residents present their challenging and heartfelt dilemmas in caring for elder patients. In the conversations that ensue, the elders come to function not simply as teachers, but collaborators in a process in which doctors, researchers, and elders together create a community of resources, capable of identifying novel ways to overcome health-related difficulties which might not have been apparent to either group separately. Using the first meeting of the Council as an exemplar, we describe and discuss the special nature of such meetings and also the special preparations required to build a dialogic relationship between participants from very different worlds--different generations, different cultures (including the professional culture and the world of lived experience). Meetings with the council have become a required part of the primary care residency program--a very different kind of 'challenging case conference' in which moral dilemmas can be presented, discussed and reflected upon. It is not so much that elders give good advice in their responses--although they often do--as that they provide life world and value orientation as young residents gain a better sense of the elder's experience and what matters most to them. This project has been particularly worthwhile in addressing the problem of ageism--a way to render visible stereotypes and adverse physician values, with implications for decision-making with the patient, not for the patient.

Amundson MJ. Trotter CM.
Developing A Network of Mental Health Workers for Pacific Islands.
International Nursing Review. 38(1):14-8, 1991 Jan-Feb.

In sum, community participation was central from the inception of this project and throughout the four phases. Participants were involved in trainee selection, curriculum development and modification and negotiation of clinical practicum and evaluation. Their contributions significantly influenced the content and process of the workshops on a daily basis. For the in situ training the indigenous trainers used a similar process of participation and planning, and adapted the workshops specifically to the island culture. Evaluation methods were similarly adapted to the specific communities. High success rate of returns resulted from the evaluators' careful sensitivity to the culture and the adaptation of the Western research process. The team involvement in the participant's transformation and self-reliance created a productive mutual experience.

Armenta, F.
Latinos and Group Parent Training: A Research Study with Implications for Increasing Parental Participation in Group Parent Training Programs
Degree: Ph.D.
Year: 1993
Pages: 00259
Institution: California School Of Professional Psychology - Los Angeles; 0068
Advisor: Chairperson: Kerby T. Alvy
Database: Dissertations
Source: DAI, 54, no. 01B, (1993): 0482

Abstract: Parent training is now considered an important community intervention to prevent and treat problems like child abuse and juvenile delinquency. This descriptive study explored factors that are believed to be influential in the participation of Latino parents in parent training programs. Hypothesis about the potential influence of acculturation, social class and parental stress were tested in terms of their relationship to a variety of potential influencing forces (prior parental knowledge about training programs, recruitment procedures, and program, group and instructor characteristics).

Ninety Mexican and Mexican American mothers of children ages 5-9 participated. Results showed that acculturation and social class had uneven effects on various factors. Stress did not influence program interest; however, Latinos reported higher parental stress than Anglo norms. The results showed a very low level of awareness of parent training programs among Latino parents, suggesting the need for extensive education about parent training in Latino communities.

Based on factors that parents indicated would most positively influence their participation, a cooperative, systemic involvement approach is most likely to be successful. The approach would include educating such valued community agents as teachers, doctors, social workers and clergy to personally promote participation, possibly using simply written materials like pamphlets and flyers; holding programs in Spanish and English at schools, colleges and community centers at flexible hours for 5-7 weeks for 30-60 minutes per session; using a variety of attendance incentives and such necessary supports as the provision of child care and transportation; appealing to child and family benefits in the titles of the programs; and working to insure that non-participating spouses are supportive of the participating parent. Instructor educational background was found to be highly important, as was instructor's knowledge of program content, respectful attitude toward parents and being a parent themselves. Results are discussed in conjunction with models of health service utilization and culturally competent service delivery.

Banner RO. DeCambra H. Enos R. Gotay C. Hammond OW. Hedlung N. Issell BF. Matsunaga DS. Tsark JA.
A Breast and Cervical Cancer Project in A Native Hawaiian Community: Wai'anae Cancer Research Project.
Preventive Medicine. 24(5):447-53, 1995 Sep.

Background: This article describes a breast and cervical cancer control project in a Native Hawaiian community and presents preliminary findings from its first year. The project is community driven, with Native Hawaiian community investigators and advisors involved in all phases of the research project. Its purpose is to test the effectiveness of a culturally appropriate intervention as a means of increasing breast and cervical cancer screening practices among Native Hawaiian women.

Methods: This article discusses the process of community participation in the development of a baseline survey as well as selected findings from that survey. A baseline telephone survey was conducted to obtain an initial assessment of community knowledge, attitudes, and behavior related to cancer. Community representatives were an integral part of the research team that planned and implemented the survey.

Results: A total of 1,260 women drawn equally from the study and the control communities participated in the survey. A majority of those surveyed in both communities indicated adherence to cancer screening recommendations. Seventy-three percent of the women reported having obtained a Pap test during the past 2 years. Fifty-nine percent of women over 40 years of age reported having had a mammogram during the past 2 years. Twenty-eight percent reported having used Hawaiian remedies within the past year. Thirty-six percent of the women reported encouraging others to obtain cancer screening services.

Discussion: Though a majority of the target population are following cancer screening guidelines, a significant minority are not. While the project intervention aims to change the screening behavior of women not currently getting cancer screening, it plans to do so by enlisting the women already in compliance to reach others in their social networks who are currently not getting cancer screening. The involvement of community representatives, working alongside researchers, in baseline survey planning helped assure the survey was acceptable to the participants and the community as a whole. This process is illustrative of a participatory research commitment which underlies success in the early phase of this Native Hawaiian research project.

Chen AM. Wismer BA. Lew R. Kang SH. Min K. Moskowitz JM. Tager IB.
"Health Is Strength": A Research Collaboration Involving Korean Americans in Alameda County.
American Journal of Preventive Medicine. 13(6 Suppl):93-100, 1997 Nov-Dec.

Introduction: This is a preliminary report from a research collaboration between Asian Health Services (community health center); Koreans in Alameda County, California; and the University of California at Berkeley School of Public Health. This five-year Centers for Disease Control and Prevention project supports a collaborative community intervention to improve breast and cervical cancer screening behavior among Korean women.

Methods: A Korean Community Advisory Board and Korean-American staff were recruited, and community sensitive research (CSR) and participatory action research (PAR) principles were applied:

1. building community infrastructure for sustainable action,


2. cultural appropriateness,


3. assuring responsiveness to community needs,
and
4. a prevention focus that would assist health care providers.

We conducted a population-based telephone survey on 676 Korean adults (272 men and 404 women).

Results: The collaborative process yielded

1. a high response rate (79%),
2. baseline health information on Korean Americans,
3. broadening of the original research topic,
4. survey responses that will guide intervention design,
5. culturally competent strategies, and
6. expanded Korean-American Community capacity for local action.

Conclusions: Research collaboration between universities, community-based organizations, and ethnic communities can yield high-quality research. CSR and PAR approaches help break through cultural barriers in otherwise "hard to reach" API sub-populations. Determinants of success include sharing common goals; trust, honesty, and integrity; shared decision making; mutual respect of each partner's expertise; cultural sensitivity and cultural competence; flexibility, good communication, and mutual learning; and continuity of partners. Actively engaging members of the study population in the research process builds community capacity, thus laying the foundation for future projects that improve health status.

Flaskerud JH. Nyamathi AM.
Collaborative Inquiry With Low-Income Latina Women.
Journal of Health Care for the Poor & Underserved. 11(3):326-42, 2000 Aug.

Collaborative inquiry is a form of research in which researchers and participants work collaboratively as partners. The purpose of this paper is to demonstrate the process of collaborative inquiry through an example of a longitudinal, community-based study conducted over a six-year period. The research program focused on HIV education, counseling, and antibody testing with low-income Latina women attending a nutrition program for women, infants, and children (WIC) in Los Angeles. Collaborative, community-based inquiry emerges from the community and uses members of the targeted group to design the program, convey the message, act as advocates, evaluate the outcomes of the program, and disseminate research findings. The goal is empowerment and emancipation of both participants and researchers. Five areas in the conduct of community-based collaborative inquiry are demonstrated here: program design, implementation, evaluation, dissemination of the results of the program, and empowerment and emancipation.

Marvel MK. Grow M. Morphew P.
Integrating Family and Culture into Medicine: A Family Systems Block Rotation.
Family Medicine. 25(7):441-2, 1993 Jul-Aug.

Background: Family-oriented care and sociocultural awareness are core competency objectives in behavioral science education. Nevertheless, teaching "family" and "culture" in ways that are meaningful and useful to residents can be a challenging task for family medicine educators.

Methods: We describe a block rotation that integrates family systems theory, family-oriented skills, and sociocultural awareness into residency education. Several objectives and teaching methods are presented in detail.

Results: Resident evaluations completed one year after graduation indicated that these skills were useful in practice. All respondents recommended continuation of the block rotation in the curriculum.

Conclusion: The success of the rotation is due to a highly interactive small-group format, an emphasis on practical skills, and a multidisciplinary teaching approach. Advanced scheduling of faculty is necessary to ensure their uninterrupted participation in the rotation.

Roe KM, Minkler M, Saunders FF
Combining Research, Advocacy, and Education: The Methods of The Grandparent Caregiver Study.
Health Educ Q 1995 Nov;22(4):458-75

This article presents a case study of the effective synergy of health education inquiry, community collaboration, and policy advocacy. Using the Grandparent Caregiver Study as the example, the authors focus on key methodological decisions that enabled them to incorporate research, education, and advocacy activities into an ever-growing project on a modest budget. The study itself centered on two in-depth interviews with each of 71 African-American grandmothers raising young grandchildren due to the crack cocaine epidemic in Oakland, California. The case study demonstrates ways in which health education research can increase the efficacy of individuals and disenfranchised groups to define problems, voice their concerns, and advocate for more just and healthy public policies. Through discussion of the authors' methods and activities, they suggest strategies through which research participants, service providers, and policymakers can work together to bring a new issue to the policy arena through a collaborative and empowering research process.

Ronnau JP.
A Strengths Approach to Helping: Family Caregivers.
Children Today, 19(6):24-7, 33, 1990 Nov-Dec. (16 ref)

Shapiro J.
Correlates of Family-Oriented Physician Communications.
Family Practice. 16(3):294-300, 1999 Jun.

Background: Family orientation in patient care has long been one of the primary tenets of the practice of family medicine. Yet we know surprisingly little about how frequently family-oriented transactions occur in actual doctor-patient encounters, or about what other aspects of physician communication patterns might be associated with increased family orientation. The purpose of this study was to investigate both frequency and correlates of family orientation in a residency-based practice.

Methods: Sixty videotapes representing 38 second and third-year residents interviewing a range of multiethnic patients over a 2-year period at a community clinic were analysed for evidence of family-oriented communications, as well as other interaction behaviours such as information exchange and partnership building. Inter-rater agreement was 78%.

Results: Asking for medical information, clarifying patient information, and giving medical information and explanations were the most common types of resident actions. Family orientation was much less common, but was more frequently observed than the eliciting of a patient-centered agenda or suggestion of a psychosocial intervention or referral. Family orientation was associated with longer interviews, non-interpreted interviews, more physician questions and clarifying behaviours, and greater tendency to elicit the patient's agenda.

Conclusions: Findings of this investigation suggest that family orientation in the medical interview is enhanced by having more time and a shared language, as well as a generally probing, clarifying, patient-centered style on the part of the physician.

Speice J. Harkness J. Laneri H. Frankel R. Roter D. Kornblith AB. Ahles T. Winer E. Fleishman S. Luber P. Zevon M. McQuellon R. Trief P. Finkel J. Spira J. Greenberg D. Rowland J. Holland JC.
Involving Family Members in Cancer Care: Focus Group Considerations of Patients and Oncological Providers.
Psycho-Oncology. 9(2):101-12, 2000 Mar-Apr.

Family members are an integral part of a patient's cancer care from the moment the diagnosis is delivered to the conclusion of treatment. Family members bring with them a range of emotional reactions, interpersonal dynamics and expectations for the care the patient receives. This study is part of a multi-institutional project to continue to improve the process of cancer care. In this study, 19 focus groups (11 patient and 8 provider) were conducted concerning issues related to doctor-patient communication in eight cancer centers in the United States. The content of the conversations was analyzed and thematic categories emerged that highlight the various strengths and difficulties associated with family involvement. The focus groups' comments support the need for explicit conversations between professional caregivers, patients and their loved ones, in order to negotiate the expectations and needs of each team member. Implications for clinical practice and strategies for working with family members are offered. Copyright 2000 John Wiley & Sons, Ltd.

Suarez L. Ramirez AG. Villarreal R. Marti J. McAlister A. Talavera GA. Trapido E. Perez-Stable EJ.
Social Networks and Cancer Screening in Four U.S. Hispanic Groups.
American Journal of Preventive Medicine. 19(1):47-52, 2000 Jul.

Background: Evidence shows that social relationships play an important role in health and health behavior. We examined the relationship between social networks and cancer screening among four U.S. Hispanic groups.

Methods: We used telephone surveys to collect data in eight U.S. regions that have concentrations of diverse Hispanic-origin populations. We interviewed 8903 Hispanic adults, for a response rate of 83%; analysis was restricted to the 2383 women aged > or =40. As a measure of social integration, we formed a social network index from items on the number of close relatives and friends, frequency of contact, and church membership. We used logistic regression to estimate the effects of social integration on screening, adjusting for sociodemographic factors.

Results: Among Mexican, Cuban, and Central-American women, the effect of social integration on mammography screening was slight. The odds ratios (OR) per unit change in social integration category ranged from 1.16 to 1.22 with confidence intervals (CI) that overlapped with the null. For Pap smear screening, the effect was strongest among Mexican-American women (OR=1.44, 95% CI=1.21 to 1.72), but also evident among Central-American women (OR=1.22, 95% CI=0.72 to 2.06) and Cuban women (OR = 1.25, 95% CI = 0.81 to 1.93). Among Puerto Rican women, social integration had no effect on either mammography (OR=1.03) or Pap smear screening (OR=1.08).

Conclusions: Independent of socioeconomic factors, social integration appears to influence cancer screening participation of Hispanic women. The modest effect is not universal across Hispanic groups and was stronger for Pap smear than for mammography screening behavior. Researchers should recognize Hispanic group differences in social network characteristics and the potential of social networks to change screening behavior.

York AS.
The Importance of The Community and Its Resources. [Review] [19 refs]
Disability & Rehabilitation. 19(4):147-9, 1997 Apr.

This paper examines the concept of community, and defines it in terms of boundaries, shared needs and social interaction. It considers types of community and the functions they perform. After discussing different community resources the paper concentrates on the resources of authority and legitimation, which may be achieved by the use of client involvement and general community representation. An empiric test of the connection between client representation and effectiveness is used to illustrate the value of involving clients, their families and other community representatives is community services such as home care. [References: 19]

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