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Enlisting Service Consumers as Active Participants in HIV-Related Assessment & Care |
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To test this hypothesis, Lightfoot and colleagues "examined ... the impact of repeated risk assessments for behavioural self-monitoring as an intervention strategy for reducing sexual and substance use risk behaviours" (p. 757). Their ethnically diverse sample consisted of 365 adults, predominantly men who have sex with men, recruited from among clients of health management organizations, health departments, and community clinics. Over a period of more than 1 year, Lightfoot and colleagues found that
Lightfoot and colleagues conclude that these "results support the use of computers and self-assessments as ... tool[s] for HIV prevention" (p. 760). Created to Cultivate Confidence Self-monitoring is one matter; self-management is quite another. Managing one's own chronic health problems requires self-efficacy, or "confidence in one's personal ability to perform a task or specific behavior or to change a specific cognitive state successfully, regardless of circumstances ... . In the context of social cognitive theory ..., where personal attributes are mediators of behavior, self-efficacy specifically implicates the importance of an individual's perception of both his or her ability and capability to execute as well as to achieve successful and valued behavioral outcomes" (Marks, Allegrante, & Lorig, 2005a, p. 39). Steeped in this perspective, professionals at the Stanford Patient Education Research Center developed the Chronic Disease Self-Management Program (CDSMP). "This program consisted of a 17-hour course delivered over 7 weeks to patients with a variety of chronic illnesses. The focus of the course was the day-to-day self-management of symptoms common to chronic diseases" (Marks, Allegrante, & Lorig, 2005b, p. 150). "[T]he CDSMP ... incorporates (a) skills mastery, (b) reinterpretation of symptoms, (c) modeling, and (d) social persuasion to enhance the individual's sense of personal efficacy ... . More specifically, the course includes guided mastery of skills through weekly action planning and feedback of progress, modeling of self-management behaviors and problem-solving strategies, and social persuasion through group support and guidance for individual self-management efforts ..." (p. 152). Living Well With HIV & AIDS In the mid-1990s, dramatic improvements in the antiretroviral treatment of HIV disease prompted consideration of and movement toward a chronic disease model of care. People living with HIV/AIDS would now need "a wide range of self-care skills, particularly skills for interpreting and acting on symptoms and for using and adhering to medication regimens" (Gifford, Laurent, Gonzales, Chesney, & Lorig, 1998, p. 137). In response to these developments, the Stanford Patient Education Research Center solicited detailed input from HIV service consumers and their caregivers regarding the primary concerns and problems of living with HIV/AIDS. "Based on these results, a collaborative group of HIV/AIDS physicians, nurses, health educators, and HIV-positive community representatives" (p. 138) designed the Positive Self-Management Program (PSMP). In its present form, the PSMP
Putting Self-Care Into Practice Expanding on the design of the program, Gifford and colleagues (1998) note that "[t]he program outline is divided into detailed modules, clearly set out to maximize consistent reproducibility of the curriculum between different classes and leaders" (p. 138). "Key attributes of the PSMP include group classes conducted by trained peer-leaders using ... [a] detailed leader's manual, self-efficacy-building strategies/techniques designed to enhance confidence and motivation, and curricular elements to teach about management of symptoms, proper exercise and nutrition, and use of medications" (p. 141). The developers
Efficacious, Indeed! Early incarnations of PSMP were evaluated, both quantitatively (Gifford et al., 1998, 2001) and qualitatively (Gifford & Sengupta, 1999). The pilot study (Gifford et al., 1998) was conducted in the San Francisco Bay area with 71 educated, primarily white gay men with symptomatic HIV disease or AIDS. Results from this "randomized controlled trial, with self-administered questionnaire measurements before randomization and at 3-month follow-up" (p. 137),
To gather qualitative data from this pilot group, Gifford and Sengupta (1999) conducted "[s]tructured, open-ended telephone interviews ... with a sample of [24] PSMP participants ... . Responses to PSMP were favourable, emphasizing the importance of the contracting process, group social support and the PSMP resource book provided. Subjects also described variation in HIV knowledge and experience among group participants, and emphasized the importance of changes in health-related attitudes and behaviours as a result of PSMP education" (p. 115). In a more recent quantitative study, Gifford et al. (2001) "found that HIV patients in PSMP who are using antiretroviral medications have significantly better medication adherence and have better HIV suppression in the blood after 6 months. In spite of this, they have no more side effects than non-PSMP participants" (Stanford Patient Education Research Center, n.d.). Taking the Measure of a Self-Manager Recognizing the need for an instrument designed specifically to assess self-efficacy for disease management skills among people living with HIV, Shively, Smith, Bormann, and Gifford (2002) developed and evaluated the psychometric properties of the HIV Self-Efficacy (HIV-SE) questionnaire (http://cfar.ucsd.edu/HIV-SE_Questionnaire.pdf). The investigators arrived at a 34-item measure with six subscales: managing depression/mood, managing and adhering to medications, managing symptoms, managing fatigue, communicating with health care providers, and getting support from others. According to Shively and colleagues, "[t]he results of this methodological study provide initial support for the construct validity and internal consistency reliability of this HIV-SE questionnaire. Further psychometric testing is recommended. This new HIV-SE questionnaire should be useful in future studies for evaluating patient education interventions and outcomes. Selected items may also be useful in clinical settings for evaluating patients' confidence to manage their own symptoms and their medication regimens" (p. 378). The investigators suggest that "[f]urther evaluation should address consideration of additional domains and differentiation between the depression and the fatigue domains" (p. 371) and emphasize that "[f]urther research is needed ... before using the HIV-SE for individual clinical evaluation" (p. 377). Variations on a Theme Improvements in psychological symptoms were not seen among PSMP participants. A program with more of a mental health focus was evaluated in Hawaii, where Inouye, Flannelly, and Flannelly (2001) assigned 40 men and women living with HIV to either standard treatment or a 7-week, individualized self-management intervention. "To minimize the possible effects of social support on treatment outcomes, the ... study used individualized treatment modalities to determine the effects of a comprehensive self-management training program on moods, coping, and perceptions of health" (p. 72). The 7-week program consisted of cognitive-behavioral management skills training; coping skills training; anxiety, anger, and depression management training; biofeedback-assisted relaxation therapy; and psychoeducational classes.
Inouye and colleagues measured "significant improvements in mood, coping ability, and health attitudes in response to ... [the] self-management intervention ... [and] treatment effects tended to be more salient on those aspects of psychological functioning that were the specific foci of the various interventions. These included reductions in anger and tension, the use of more effective coping strategies, and the decreased use of ineffective coping strategies" (p. 77). "Treated participants also showed significant increases on the Internal subscale of the Health Attribution Test [i.e., an increase in their self-perceived ability to control their own health]" (p. 71). Inouye and colleagues encourage the teaching of self-management strategies to address negative mood and improve coping skills (and, by extension, quality of life) in people living with HIV. Addressing the increasing interest in antiretroviral adherence in recent years, Smith, Rublein, Marcus, Brock, and Chesney (2003) randomly assigned 43 individuals who were initiating or changing their highly active antiretroviral therapy regimen to either a clinic-based medication self-management program or standard care.
Smith and colleagues found that self-management group participants were more likely to take at least 80% of their medication doses each week than were study participants receiving standard care. "This study found preliminary evidence that a clinic-based intervention based on feedback and discussion of adherence performance and principles of self-regulation improves adherence to dosing schedules for antiretrovirals" (p. 196). A Question of Consumers' Priorities British investigators (Kennedy, Rogers, & Crossley, 2007) utilized a mix of qualitative methodologies to both observe and assess a PSMP course organized by a British AIDS service organization and run under governmental auspices for a diverse set of participants. The investigators lay the groundwork for their analysis by highlighting differences between groups dedicated to self-management and those dedicated to self-help and mutual support. Self-management groups, with their focus on assuming personal responsibility, increasing self-efficacy, and promoting individual behavioral change, have already been amply described. In contrast,
In short, the support group experience itself might be a crucial factor in the change process associated with participating in such a group. Among the observations made by Kennedy and colleagues regarding the self-management group experience,
Reframing and commenting upon this observation, the investigators discern that
"[I]n considering the way in which self-management becomes focused on the future," conclude Kennedy and colleagues, "collective user-defined need and the preexisting relationships and support provided by host organizations might be as important in bringing about improvement in the self-management of a chronic condition, if not more so, than the structured course content of the PSMP" (p. 755). ---- Compiled by Abraham Feingold, Psy.D. References Gifford, A.L., Bormann, J.E., Shively, M.J., Lee, M., Capparelli, E.V., Richman, D.D., & Bozzette, S.A. (2001, February). Effects of group HIV patient education on adherence to antiretrovirals: A randomized controlled trial. Paper presented at the 8th Conference on Retroviruses & Opportunistic Infections, Chicago, IL. Gifford, A.L., Laurent, D.D., Gonzales, V.M., Chesney, M.A., & Lorig, K.R. (1998). Pilot randomized trial of education to improve self-management skills of men with symptomatic HIV/AIDS. Journal of Acquired Immune Deficiency Syndromes & Human Retrovirology, 18(2), 136-144. Gifford, A.L., Lorig, K., Laurent, D., & González, V. (2005). Living well with HIV & AIDS, 3rd edition. Boulder, CO: Bull Publishing. Health Services Research & Development, VA San Diego Healthcare System. (2000). HIV Self-Efficacy (HIV-SE) questionnaire. Retrieved July 5, 2007, from http://cfar.ucsd.edu/HIV-SE_Questionnaire.pdf Inouye, J., Flannelly, L., & Flannelly, K.J. (2001). The effectiveness of self-management training for individuals with HIV/AIDS. Journal of the Association of Nurses in AIDS Care, 12(5), 71-82. Kennedy, A., Rogers, A., & Crossley, M. (2007). Participation, roles, and the dynamics of change in a group-delivered self-management course for people living with HIV. Qualitative Health Research, 17(6), 744-758. Lightfoot, M., Rotheram-Borus, M.J., Comulada, S., Gundersen, G., & Reddy, V. (2007). Self-monitoring of behaviour as a risk reduction strategy for persons living with HIV. AIDS Care, 19(6), 757-763. Marks, R., Allegrante, J.P., & Lorig, K. (2005a). A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: Implications for health education practice (Part I). Health Promotion Practice, 6(1), 37-43. Marks, R., Allegrante, J.P., & Lorig, K. (2005b). A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: Implications for health education practice (Part II). Health Promotion Practice, 6(2), 148-156. Regan, C. (n.d.). Time for healing: Relaxation for mind and body [CD/audiocassette]. Boulder, CO: Bull Publishing. Shively, M., Smith, T.L., Bormann, J., & Gifford, A.L. (2002). Evaluating self-efficacy for HIV disease management skills. AIDS & Behavior, 6(4), 371-379. Smith, S.R., Rublein, J.C., Marcus, C., Brock, T.P., & Chesney, M.A. (2003). A medication self-management program to improve adherence to HIV therapy regimens. Patient Education & Counseling, 50(2), 187-199. Stanford Patient Education Research Center. (n.d.). Positive self-management program for HIV. Retrieved July 5, 2007, from http://patienteducation.stanford.edu/programs/psmp.html ------------------ |
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