| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|
|
|
|||||||
|
|||||||||
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
MULTISECTORIAL RESPONSES TO HIV/AIDS |
Gloria Asencio Toro is with the Graduate Program of Psychology, Inter American University of Puerto Rico, San Germán. Patricia Burns is with the Harvard School of Public Health AIDS Initiative, Boston, Mass. Daniel Pimentel is with the Enhancing Care Initiative of Puerto Rico, Mayagüez. Luis R. Sánchez Peraza is with the Department of Psychology, University of Puerto Rico, Ponce. Carmen Rivera Lugo is with the Psychology Department, Pontifical University of Puerto Rico, Ponce.
Correspondence: Requests for reprints should be sent to Gloria Asencio Toro, PhD, Graduate Program of Psychology, Inter American University of Puerto Rico, PO Box 5100, San Germán, PR 00683 (e-mail: gasento{at}choicecable.net; gasenciotoro{at}sg.inter.edu).
 |
ABSTRACT |
|---|
The Enhancing Care Initiative of Puerto Rico assessed services available to people living with HIV/AIDS in the western region of Puerto Rico. Participants were 212 people living with HIV/AIDS and 116 employees from 6 agencies providing HIV/AIDS services in the region. Two main findings were that depression symptoms were present in 98.1% of people living with HIV/AIDS, and 7 of the 15 municipalities in the region did not provide any specific services to this population.
Most urgent needs identified by people living with HIV/AIDS were economic support, housing, mental and psychological services, medicines, medical treatment, and transportation. The Enhancing Care Initiative provides an example of a successful multisectoral, multidimensional volunteer team effectively overcoming challenges while translating research into interventions to enhance HIV/AIDS care.
|
INTRODUCTION |
|---|
Multisectoral collaboration has been studied from many different perspectives. This approach has various names such as the partnership approach,2 multidisciplinary health care team or multidisciplinary team,3–4 community-based effort,5 and multisectoral collaboration.6 Regardless of the term, this approach addresses specific health care problems through collaboration within a multisectoral framework. The multisectoral approach to the HIV/AIDS epidemic has been defined as a response that involves "all sectors of society—governments, business, civil society organizations, communities and people living with HIV/AIDS at all levels ... in addressing the causes and impact of the HIV/AIDS epidemic. Such a response requires action to engender political will, leadership and coordination, to develop and sustain new partnerships and ways of working, and strengthen the capacity of all sectors to make an effective contribution."6(p2)
A wide range of problems can be addressed with the multisectoral approach. These include HIV infection health care problems faced by Latinos,5,7–9 assessment of community health services,4,7,9 communication between patients and service providers,5 primary health care reform,3 quality of mental health care,7 and rural health service delivery.2,5 There is a growing trend among agencies and institutions providing services to recognize and promote the importance of working through partnerships or teams to improve the effectiveness of their specific endeavors.
|
WHY PUERTO RICO’S WESTERN REGION? |
|---|
|
ECI IN PUERTO RICO |
|---|
ECI PR comprised an executive committee—principal investigator, team leader, research coordinator, monitoring and evaluation coordinator, and a group of active volunteers. Subcommittees were created to attend specific tasks such as publications, monitoring and evaluation, research, and special activities. Initial team recruitment took place from 2001 through 2002 and continued as a funded project until December 2005. Selection criteria were interest in, commitment to, and experience with research or provision of HIV/AIDS services in the western region.
The team’s selection criteria accommodated the premise that the effectiveness of the multisectoral approach is highly dependent on the capacity of its members to engage and use existing networks as well as create new ones.6 The ECI PR team included people living with HIV/AIDS, health professionals, consultants, and representatives from central and local governments, academic institutions, nongovernmental organizations, residential treatment centers, soup kitchens, emergency shelters, and religious organizations. The team was rounded out by the expertise of 1 lawyer and 1 gay activist. This 20-member team has succeeded in combining their academic, research, governmental/municipal, personal, and agency resources with the research findings to identify and recommend ways to meet the needs of the local situation. Each team member’s personal and professional working experience with people living with HIV/AIDS (self, relative, friend, neighbor, client, or colleague) contributed to their acute awareness of the situation in this region and motivated them to participate.
|
TEAM DYNAMICS |
|---|
One important dynamic within the ECI PR team was that although it had a team leader and executive committee, all decisions related to mission, objectives, policies, budget, administrative affairs, research issues, monitoring, and evaluation were recommended, discussed, and approved by the whole team. In order to work efficiently and to keep the group together, several strategies were used: personal and electronic communications, regular meetings (1 per month), follow-up telephone calls, use of formal and informal work environments for meetings, and the Central Alliance for Community Technology voice active Internet communication system.
Notwithstanding the soundness of the multisectoral approach, several difficult situations arose. For example, at the beginning, HAI, which had worked with 4 other ECI projects, had never implemented the ECI concept with a team that was outside the university setting. Differences in both communication methods and concept development were evident during the first few months of establishing an agreement between our contractor (HAI) and the fiscal agency (Estancia Corazón, Inc.). To solve the differences, new terms of agreement were established and included the following: the fiscal agency would be the team leader (subcontract budget administrator); all fiscal and programmatic communication would flow through HAI and not directly with the funders; all communication between HAI and Estancia Corazón, Inc, would flow through the research coordinator; and the HAI program manager would visit Puerto Rico every quarter to work directly with the team.
|
TEAM ACCOMPLISHMENTS |
|---|
illustrates the activities and strategies of ECI PR teamwork. Group diversity acted as a "spark" to generate ideas and promote dynamic group discussions to fulfill our most important goal of enhancing the quality of life of people living with HIV/AIDS. The whole experience has had a profound impact on all team members as well as on the western region as shown in the box on the next page.
|
|
RESEARCH APPROACH AND OBJECTIVES |
|---|
 TOPABSTRACTINTRODUCTIONWHY PUERTO RICO'S WESTERN...ECI IN PUERTO RICOTEAM DYNAMICSTEAM ACCOMPLISHMENTS RESEARCH APPROACH AND OBJECTIVES FINDINGSDISCUSSION AND RECOMMENDATIONSLIMITATIONSLESSONS LEARNEDReferences |
|---|
The team identified the following research objectives: (1) assess existing services for adequacy, availability, diversity, and accessibility; (2) identify gaps in AIDS care services; (3) evaluate the HIV/AIDS knowledge of employees and people living with HIV/AIDS; (4) prioritize the needs of people living with HIV/AIDS; (5) determine the level of social support perceived by people living with HIV/AIDS; and (6) identify the lifestyles and AIDS-related symptoms of people living with HIV/AIDS.
In order to identify the profile of people living with HIV/AIDS and fulfill the proposed objectives, the research team, composed of the principal investigator, a research supervisor, and graduate students from 2 private universities participating for course credit, gathered information from 116 employees (caregivers) and 212 people living with HIV/AIDS and receiving services in 6 agencies in 5 municipalities of the western region. Participation was voluntary, and all participants were treated according to the standards of the institutional review boards of the Harvard School of Public Health and the Inter American University of Puerto Rico. Data collection included both quantitative and qualitative approaches—interviews, 1 focus group with 8 people living with HIV/AIDS, and the administration of the following instruments: Social Support Questionnaire, AIDS Knowledge Questionnaire, Center for Epidemiological Studies Depression Scale, Life Styles and Sexual Practices Scale, Needs Checklist, AIDS-Related Symptoms Checklist, and Evaluation of Services Scale. Data analysis included the use of univariate descriptive statistics for qualitative and quantitative variables. Pearson correlation coefficients were used to examine the univariate associations between social support, reported needs, AIDS-related symptoms, and depression levels.
|
FINDINGS |
|---|
Findings related to AIDS knowledge were that the people living with HIV/AIDS and employees had high levels of knowledge. The AIDS Knowledge Questionnaire scores can range from 0 to 33; the knowledge mean for employees was 31 (SD = 1.8) and for people living with HIV/AIDS was 28 (SD = 4). Misconceptions demonstrated by people living with HIV/AIDS and employees included the following: all HIV-positive persons have AIDS, and casual contact with people living with HIV/AIDS is dangerous.
Quantitative and qualitative analysis obtained through the Evaluation of Services Scale showed that there was general satisfaction with the services provided by these 6 agencies (81.8% of people living with HIV/AIDS and 96.4% of employees evaluated the services as good or very good). Pre- and postcounseling, pharmacy services, administration of HIV tests, medicines, and dental health services were the most highly evaluated services. Although the overall evaluation was favorable, the participants expressed a need to strengthen some of the services.
The people living with HIV/AIDS identified social and psychological services, individual guidance, community intervention, health education, and appointment coordination as services that needed to be improved because they were insufficient or unavailable in many municipalities. Employees agreed with people living with HIV/AIDS that social and psychological services needed to be strengthened.
People living with HIV/AIDS reported that their most urgent needs included economic support (70.8%), short- and long-term housing (46.7%), mental and psychological services (35.8%), medications (34%), more availability of medical treatment (33.0%), and transportation (31.1%). Faced with immediate economic and housing needs, people living with HIV/AIDS might not give the need for psychological services equal importance. However, the link between the services needing improvement at the agencies and the third most urgent need for mental and psychological services identified by the people living with HIV/AIDS was quite clear.
Another finding was that 7 of the 15 municipalities in the region did not provide any specific service to people living with HIV/AIDS. Services related to palliative care, care for the dying, caregivers’ support, care education, and dissemination of information were provided by only 1 agency located in only 1 municipality, Mayagüez. The unavailability of services in many municipalities was worsened by the fact that many poor people living with HIV/AIDS did not have their own transportation and that public transportation to many neighborhoods (counties) was very limited after midafternoon.
An important finding was that some people living with HIV/AIDS in this region preferred to receive services far from their homes. Receiving services in a place where they could not be identified by people they knew was offered as the main reason. These findings are consistent with recent works on social stigma and HIV/AIDS in Puerto Rico.14–16
Clinical information included as part of the data collection showed that depression symptoms were present in 98.1% of the people living with HIV/AIDS and were significantly associated with the number of needs reported by the participants (r = 0.239, P < .05) and to their number of AIDS-related symptoms (r = 0.368, P < .05). Depression was also inversely correlated with the amount of social support (r = –0.184, P < .01) and with their satisfaction with social support (r = –0.141, P < .05). These results are consistent with those found in studies of Puerto Rico and of other regions regarding the prevalence of depression in people living with HIV/AIDS.14–20
|
DISCUSSION AND RECOMMENDATIONS |
|---|
Following the ECI framework, after completing the research, each team designed its strategies. The ECI PR team discussed their research findings and implications for identifying phase 3 interventions to use local resources to enhance care for people living with HIV/AIDS, their families, and caregivers. In addition to the care analysis themes in the ECI framework (epidemiology and needs of the target population, costs and economics, human rights and ethics, and the involvement of people living with HIV/AIDS), the team defined the following criteria for evaluating possible interventions: attention to diversity, respect for people living with HIV/AIDS, economic viability with the use of local resources, maximal outreach to underserved populations within the scope of expertise and interest of the ECI PR team members, and pertinence to the profile of the people living with HIV/AIDS identified in the situation analysis.
Building on 2 of our team’s major accomplishments—multisectoral cooperation and collaboration—the team involved students from 2 universities in meaningful research and team-building skills and selected 2 major interrelated interventions. Again using ECI PR’s success at establishing a multisectoral strategy, the team chose to plan and develop an Integrated Interdisciplinary Regional Services Coordination Unit as the first core intervention. HIV/AIDS care providers in the region were invited to share their expertise to coordinate multiple services—a referral system, a unified case management protocol, and information management. Attention to multi- and interdisciplinary work, promoted through a non-hierarchic organizational structure, might promote effective and relevant participation of all sectors/persons joining efforts to coordinate services. We expect to improve the status of the persons living with HIV/AIDS in the western region of Puerto Rico through access to integrated and expanded AIDS care and treatment services. In this way we will address the scarcity and inaccessibility of services as well as the limitations of transportation.
The planning and development of a practicum and an internship program for psychology master’s and doctoral students from the San Germán Campus of the Inter American University of Puerto Rico and the Pontifical Catholic University of Puerto Rico is our second intervention. It addresses the need to improve the mental health and social services at current collaborating agencies. In addition, it solidifies collaboration between academic institutions and care providers in the area as well as provides opportunities for students to gain meaningful professional skills and experience.
A collaborative conference with the Florida/Caribbean AIDS Education and Training Center on HIV/AIDS was held in April 2005. This contributed to satisfying the need for continuing education for health professionals and provided a venue to release the research findings. Presentations to HIV/AIDS providers and municipalities in the region informing them of the findings and assisting in identifying local people living with HIV/AIDS service needs were conducted. A questionnaire to determine HIV testing and referral patterns in the region was developed and will be implemented and analyzed by July 2006.
The overwhelming response to the conference, resulting in the need to increase the number of participant slots by 30%, and the interest of 2 universities and multiple agencies to participate in the internship program were evidence that the needs identified by the research were compatible with our interventions.
|
LIMITATIONS |
|---|
|
LESSONS LEARNED |
|---|
Forewarned is forearmed.
Developing and sustaining a highly functional ECI team is hard work and should be addressed as such. Too often the intense work needed to establish and sustain a successful team is understated, leading to groups giving up when the going gets tough and ultimately feeling as if they are failures.
The amount of time and commitment of the team are directly proportional to the success of that team.
Other teams may not be as successful with such a small grant if they do not have as dedicated, experienced, and multidisciplinary team.
Don’t be afraid to ask for help.
We exchanged ideas with other ECI teams for insight into their lessons learned and accepted and applied technical assistance from our grantee and funder in monitoring and evaluation, strategic planning, and human subjects compliance.
Better safe than sorry (Más vale precaver que tener que remediar).
It’s a good idea to develop and use a strategy to diplomatically and respectfully overcome challenges. All teams encounter challenges. The ECI PR team established strategies (personal and professional respect, recognition, appreciation, and limitations of strong personalities) for overcoming challenges before they arose, eliminating negative feelings and divisive actions when difficult situations arose.
There is more than 1 good way to do anything, including communication.
Good multimethod communication is imperative to keep the group cohesive and dynamic. Formal, informal, full-team, and group meetings; telephone calls; e-mail communication; and Internet voice communication helped the ECI PR team communicate despite so many busy and varied team members’ schedules.
Focus, focus, focus.
A clear focus and solid commitment to the goal and objectives of the team are essential to getting things done. This is especially the case with a very diverse team. Our success with this aspect was evident in the process we used to determine our interventions.
Set reasonable and achievable goals.
It is better to do a few things really well and exceed your expectations with a satisfied team than to attempt to do too much and end up not doing anything well and having a dissatisfied (burned-out) team.
A very important learned lesson is that if one wants to act effectively when faced with life-threatening problems, a multisectoral, multidimensional approach is in order. A mechanism for gathering and sharing information and coordination supporting the inclusion of all major stakeholders, regardless of their sector, work, or organizational affiliation, is imperative. ECI PR has served as a link joining forces among community-based organizations, agencies, central and municipal programs, universities, people living with HIV/AIDS, religious organizations, and professionals from diverse areas. It would not have been possible for the ECI PR team to accomplish the research and the interventions for the implementation phase if we had not recognized, learned, practiced, and applied our guidelines and lessons.
|
|
Acknowledgments |
|---|
We are grateful to Manuel Bahamonde for his assistance in the data collection and the analysis process. We are also grateful to Carmen Rodríguez Fernández and to Norma Maldonado for their assistance in the identification of research assistants. The following Enhancing Care Initiative Puerto Rico team members reviewed and approved this article: E. Arroyo, M. Bahamonde, M. A. Del Río, A. Dones, R. Frank, C. González, M. Parilla, E. Pintado, N. Ramos, E. Rodríguez, F. Rodríguez, I. Santiago, and R. Soto.
We thank Richard Marlink and Sofia Gruskin for their helpful review and comments.
Human Participant Protection
The research protocols and instruments were reviewed and approved by the Harvard School of Public Health and the Inter American University institutional review boards.
|
Footnotes |
|---|
Contributors
G. Asencio Toro was responsible for planning the research, analyzing the data, and writing the first and subsequent versions of the article. P. Burns reviewed the article, contributed significantly to the writing of the paper and to the data interpretation, and provided substantial suggestions for revisions. P. Burns conducted site visits. D. Pimentel coordinated the ECI PR research and wrote with G. Asencio Toro the first version of the article. L.R. Sánchez Peraza and C. Rivera Lugo reviewed the article, contributed significantly to the writing of the article and to the data interpretation, and provided substantial suggestions for revisions.
Accepted for publication October 3, 2005.
|
References |
|---|
2. Berkowitz B. Rural public health services delivery: promising new directions. Am J Public Health. 2004;94:10:1678–1681.
3. Chafe R. What approach should the providence take to primary health care reform? Available at: http://www.nlma.nf.ca/nexus/issues/spring_2004/articles/article_5.html. Accessed March 7, 2006.
4. Mitchell F. Conjoint multidisciplinary assessment in a community mental health team: the impact on the social work role. Social Work Health Care. 2002;35(1–2):605–613.[CrossRef]
5. Casey MM, Blewett LA, Call KT. Providing health care to Latino immigrants: community-based efforts in the rural Midwest. Am J Public Health. 2004;94:10:1709–1711.
6. Commonwealth Secretariat: Health Section—Social Transformation Programmes Division. Guidelines for implementing a multisectoral approach to HIV/AIDS in commonwealth countries, Revised Version, 2003. Available at: http://www.thecommonwealth.org/shared_asp_files/uploadedfiles/%7B21AE7406-8160-4C54-AE76-73CD49EEF416%7D_GuidelinesMultisectorFINAL.pdf. Accessed October 4, 2004.
7. Toro-Alfonso J, Varas-Díaz N, Andújar-Bello I. Evaluation of an HIV/AIDS prevention program intervention targeting Latino gay men and men who have sex with men in Puerto Rico. AIDS Educ Prev. 2002;14:445–456.[CrossRef][ISI][Medline]
8. Zambrana RE, Llewlly CJ, Boykin SS, López SD. Latinas and HIV/AIDS risk factors: implications for harm reduction strategies. Am J Public Health. 2004;94:1152–1158.
9. Rios-Ellis B, León R, Francine-Trujillo E, et al. From words to action: the evolution of a national HIV/AIDS needs assessment of Latinas. Ciencias Conduct. 2003;18:78–104.
10. UNAIDS. AIDS Epidemic Update. Geneva, Switzerland: Joint United Nations Programme on HIV/AIDS(UNAIDS), World Health Organization (WHO); 2004.
11. Surveillance Report: February 28, 2005. San Juan, PR: Puerto Rico Department of Health; 2005.
12. Beauchamp. VIH en la sala de emergencia [HIV at the emergency room]. Paper presented at: the HIV-AIDS 2005 Conference: Responding to the Western Region’s Needs; April 2005; Aguadilla, PR.
13. Bureau of Primary Health Care. US Department of Health and Human Services. Available at: http://bphc.hrsa.gov/databases/newmua. Accessed March 7, 2006.
14. Varas Díaz N, Serrano García I, Toro Alfonso J. Estigma y diferencia social: VIH/SIDA en Puerto Rico [Social Difference and Stigma: HIV/AIDS in Puerto Rico]. San Juan, PR: Ediciones Huracán; 2004.
15. Rodríguez Madera S, Toro-Alfonso J. The community we do not mention: social vulnerability, high risk, and HIV/AIDS in transgender community in Puerto Rico. Rev Puertorriqueña Psicología. 2003;14:7–40.
16. Santiago Andújar LE. La construcción social de la estigmatización hacia las personas con el VIH/SIDA en el discurso médico oficial [Social Construction of the Stigmatization Toward People Living with HIV/AIDS in the Official Medical Discourse] [doctoral dissertation]. Río Piedras, PR; Universidad de Puerto Rico; 1994.
17. Hays RB, Turner H, Coates TJ. Social support, AIDS related symptoms, and depression among gay men. J Consult Clin Psychol. 1992;60:3:463–469.
18. Nieves Rosa LE, Rivera Ortiz RJ, Toro Alfonso J, Varas Díaz N. En la unión está la fuerza: las redes de apoyo social de personas con VIH/SIDA en Puerto Rico y República Dominicana [The strength is on the unity: the social support nets of people with HIV/AIDS in Puerto Rico and Dominican Republic]. Paper presented at: the 50 Convention of the Puerto Rico Psychology Association; November 2003; San Juan, PR.
19. Rivera Rosado M. Apoyo social, síntomas relacionados al SIDA y depresión en personas puertorriqueñas [Social Support, AIDS-Related Symptoms and Depression in Puerto Rican Persons] [master’s thesis]. San Germán, PR; Inter American University of Puerto Rico; 1998.
20. Alegría M, Vera M, Freeman DH Jr, Robles R. HIV infection risk behaviors and depressive symptoms among Puerto Rican sex workers. Am J Public Health. 1994;84:2000.
21. Neruda P. Canción de gesta [War Song]. Buenos Aires, Argentina: Seix Barral Eds; 1960.
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
