mental health AIDS

Fall 2007 Newsletter / Volume 9, Issue 1

Enlisting Service Consumers as Active Participants in HIV-Related Assessment & Care

In the Summer 2007 issue of mental health AIDS, the main Tool Box outlined steps for "Tailoring Evidence-Based HIV Behavioral Risk-Reduction Interventions to Local Capacity & Target Audience Characteristics." Lightfoot, Rotheram-Borus, Comulada, Gundersen, and Reddy (2007) observe that efficacious interventions, such as those recommended for tailoring, have been delivered at a relatively high cost, both with regard to time and resources. Yet,

[i]n every HIV prevention clinical trial mounted, those participants that did not receive intervention (i.e.[,] the control group) decreased their sexual risk behaviours over time. The control group's only experience in these trials is repeated assessment of behaviour. ... The improvements found in participants in the control conditions suggest that conducting ongoing self-assessments can effectively reduce sexual risk behaviours by as much as 30% among varied groups. ... [B]uilding on the observed change in control condition participants by repeatedly assessing risk behaviours over time may be a cost-efficient HIV preventive intervention. (p. 758)

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

[c]ompleting greater numbers of self-assessments [prior to or just after regularly scheduled medical appointments1] resulted in a number of changes in HIV-related transmission behaviour. Increases in the number of self-assessments were significantly related to increases in protected sex with sexual partners of HIV-negative or unknown serostatus ... . In addition, [persons living with HIV] with increased self-assessment were more likely to acknowledge their higher risk for contracting STDs [sexually transmitted diseases] or being reinfected with HIV, as well as [to report] decreasing negative attitudes about stopping unprotected sex. ... Consequently, it appears that allowing [persons living with HIV] to reflect on their sexual behaviour influences their subsequent decisions regarding sexual behaviour. It is likely that by having the patients acknowledge and report, in a nonconfrontive and nonjudgemental manner, those behaviours that could result in transmission of HIV, their motivation to reduce HIV-transmission related behaviour increased and their attitudes became more conducive to reducing risk behaviours. Consequently, self-assessments appear to be a promising avenue for promoting behaviour change in a setting … [where persons living with HIV] regularly interface [with HIV service providers]. (p. 760)

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

is a workshop for people with HIV given two and a half hours, once a week, for seven weeks, in community settings such as senior centers, churches, libraries and hospitals. Workshops are facilitated by two trained leaders, one or both of whom are non-health professionals with HIV. The PSMP is available in English, Spanish, and Japanese.

Subjects covered include: 1) how to best integrate medication regimens into daily life so they can be taken consistently, 2) techniques to deal with problems such as frustration, fear, fatigue, pain and isolation, 3) appropriate exercise for maintaining and improving strength, flexibility, and endurance, 4) communicating effectively with family, friends, and health professionals, 5) nutrition, 6) evaluating sym[p]toms, 7) advanced directives, and 8) how to evaluate new or alternative treatments.

Each participant in the workshop receives a copy of the companion book, Living Well With HIV and AIDS, 3rd Edition, and an audio relaxation tape, Time for Healing. ...

It is the process in which the program is taught that makes it effective. Classes are highly participative, where mutual support and success build the participants' confidence in their ability to manage their health and maintain active and fulfilling lives. (Stanford Patient Education Research Center, n.d.)

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

integrated self-efficacy concepts into the PSMP curriculum by using key course elements to enhance four types of experience that can influence self-efficacy perceptions. ... For each of these types of experience, specific elements have been included in PSMP to maximize participants' self-efficacy learning.

Performance accomplishments ... provide individuals with direct experiences that are evidence of mastery and skill. "Contracting" is a skill taught and reinforced ... to enhance ... a sense of performance accomplishment. During each PSMP session participants "contract" by: (a) articulating specific goals, (b) formulating goals into "doable" behaviours, and (c) collecting problem-solving suggestions from the group about how best to achieve the goal during the following week. ... The contracting process is linked with a feedback process. Each week, group members report on their contracts to the group, and get immediate feedback on any problems encountered. This reporting process maximizes a sense of mastery when contracts are successful, and provides social support to minimize perceptions of failure in the relatively rare instances when contracts are not successful.

Vicarious experiences raise efficacy perceptions by allowing individuals to see others succeeding at important tasks, therefore helping them to learn that they themselves can also succeed. Modeling by PSMP group leaders is used throughout the curriculum, maximizing positive self-efficacy effects by exposing the group to leaders' successes. ... [B]ecause PSMP is designed as a small group intervention, co-operation and interaction between participants allow … each to vicariously experience and profit from the successful experiences of other group members as well ... .

Persuasion and other forms of social influence can have a positive impact on personal efficacy. If persuasion and support are appropriately expressed, recipients can come to believe in their abilities to master tasks and achieve goals. When this happens, they are more likely to sustain efforts in the face of problems and overcome self-doubts. ...

Finally, physiological states influence efficacy because they are a potent form of immediate feedback about any task being attempted. ... PSMP includes stress management techniques to maximize participants' sense of control over physiologic symptoms. Techniques used or introduced in PSMP include muscle relaxation, guided imagery, self-talk, distraction, visualization, dissociation/distancing, re-labelling and prayer/meditation.

PSMP also deals with physiologic symptoms ... by teaching disease management skills for responding appropriately to new symptoms. ... Fear associated with new symptoms is managed by teaching PSMP participants to use symptom evaluation charts to evaluate nine common and potentially dangerous symptoms associated with HIV. Each chart leads the user through a few simple questions about the symptom and its associated features. By answering the questions, the user finds out whether the problem could be urgent enough to require immediate medical attention ... . (Gifford & Sengupta, 1999, pp. 119-121)

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),

indicate that the PSMP is practical, inexpensive, and accepted by patients, peer-leaders, and health care providers. Furthermore, the pilot results ... suggest that in the short term, self-management education may help HIV patients experience fewer significant somatic symptoms and may lead to improved self-efficacy for symptom control. The pilot results also suggest a trend toward higher levels of physical exercise, a self-care health behavior highly emphasized in the program. Improvements were not seen in psychological symptoms, and no conclusions are possible about any long-term effects of the educational program. (pp. 141-142)

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.

Educational material in the protocol contained information specific to HIV, stress theory, and community resources. Self-management techniques included biofeedback-assisted relaxation techniques of imagery, abdominal breathing, progressive muscle relaxation, and autogenic training. Cognitive/coping strategies included cognitive restructuring and management of stressful emotions such as anger, depression, [and] anxiety, ... [as well as the enhancement of] problem-solving skills. The interventions were administered individually twice a week for approximately 60 to 90 minutes. All participants received 14 sessions during the 7-week program. (p. 73)

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.

Participants in the self-management program received individualized patient education and assistance with medication self-management and skills training by a registered pharmacist or nurse (i.e., an efficacy intervention). The self-management program consisted of three central components: (a) information exchange, (b) skills development, and (c) social support enlistment. In addition to the education and assistance, [participants in] the self-management group scheduled three follow-up appointments with the study pharmacist ... or nurse and received private one-on-one counseling[, as well as feedback on their adherence performance derived from electronic monitors on their medication bottles,] at approximately monthly intervals. Prior to each follow-up counseling session, participants were asked to complete ... [a 40-item] self-efficacy questionnaire. (p. 189)

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,

[s]elf-help groups ... [rely] on collective notions of mutuality, at the same time emphasizing the rights and responsibilities of individuals to manage their health in any manner they choose. The approach attributes agency to consumers regarding decisions about their health care. Self-help and mutual support groups operate with a range of values: mutual support and friendship, fundraising for research, information and learning resources, a safe haven for people with stigmatized conditions, and a lobby for recognition and support. Involving people in self-help groups allows for the development of a shared identity based on common experiences ... . The help that can be gained by simply coming together is said to be as a result of the collective wisdom derived from shared experiences ... . (p. 745)

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,

the constraints of the course content and its formulaic and strictly timed delivery precluded people being as therapeutically confessional as they might have wished ... . In the PSMP, lay leaders are constricted by having to get through a specified series of topics within a rigid timescale. Many potentially useful discussions were cut short during the course.

In this respect, this CDSMP differed from the ethos and practices of self-help and mutual support groups, where users have control over the content of discussions and traditionally allow more room for individuals to take part in storytelling, which enables the emergence and construction of collective and individual identities ... . (pp. 754-755)

Reframing and commenting upon this observation, the investigators discern that

narratives or ways of presenting to the group that did not fit the underlying ethos and structure of the course were marginalized in favor of the structured delivery of content of the PSMP. In this respect, the notions of empowerment and individual responsibility, which underpin the outcomes of formal self-management groups, appear to be at variance with the self-help philosophy of mutual aid. The desire of the group to introduce experiential and other agendas into their discussion of managing their HIV status clashed with the highly individualistic approach to self-management inherent in the philosophy of the course (e.g., goal setting and action planning for individual well being). ... The unexpected value people placed on the increase in social networking and the relevance of social and material resources indicate that a course with greater emphasis on this aspect might be of as much or greater worth to participants than the goal of increasing in self-confidence at an individual level. The latter might not, in any case, be sustainable without adequate social and material support. (p. 755)

"[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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 1 "Upon arriving for their medical appointments, participants were taken to a private clinic room to complete the self-assessment while waiting for their medical provider. The self-assessment interviews were conducted in English ... [with] laptop computers utilizing ACASI (audio computer-assisted self interview). Patients responded to all questions directly into the computer. Each question was presented visually and was read by the computer to the patient. The self-assessment was approximately 25 to 30 minutes [in length], depending on the behavioural profile of the patient. If the participant could not complete the assessment before seeing ... [his or her] provider, he or she completed the self-assessment following his or her provider appointment. Participants received the self-assessment in concordance with ... [their] existing schedule[s] for medical visits of every three to four months" (p. 758).

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