Self-management programs for people with HIV

HIV Australia | Vol. 8 No. 1 | April 2010

By Neil McKellar-Stewart

HIV is increasingly seen as one of a number of manageable chronic health conditions. Because of the efficacy of highly active antiretroviral treatments (HAART), mortality attributable to HIV infection and AIDS has reduced dramatically since the mid-1990s. Recent data from public health databases and cohort studies indicate that life expectancy for people with HIV has been extended to near-normal levels.^1,2

HIV meets several chronic disease criteria: an uncertain course, a prescribed treatment regimen, requirement for self-care, significant stigma, changes in personal relationships, identity changes, and psychological distress. ³ The goal of chronic illnesses healthcare is to control symptoms and prevent disability rather than cure the disease – certainly this is the case with HIV.

Because of the success of treatments for HIV in developed countries, people living with HIV are ageing. Many have lived with HIV for many years. Decades of low to moderate immunosuppression pose significant health issues for people with HIV. These, along with concerns about long term HIV-specific drug toxicities, are revealing a growing body of evidence of early onset of metabolic, cardiovascular, renal, hepatic, bone, and central nervous system degenerative diseases, as well as non-AIDS associated malignancies. ^4,5

Self-management: an imperative for people with HIV

In order for people with HIV to best maintain their health it is advisable that they adopt a range of behaviours which include:

being the principal caregiver for themselves
engaging in day-to-day ‘illness work’ (this includes taking medications, managing treatment side effects, attending to their mental health and to lifestyle issues such as exercise, diet, drug and alcohol intake, etc.)
changing behaviour to improve symptoms and maintain, as far as possible, immune functioning
working in partnership with treating doctors to make treatment decisions, maintain ongoing HIV monitoring and attend medical appointments, manage emotional responses to illness, treatment, and discrimination, and
minimising the risk of transmissible infections including HIV and other sexually transmissible infections (STIs).

People with HIV have a pivotal role in assuming an active and informed role in managing the physical, psychological and social aspects of their HIV infection. Increasingly, models of care for people with chronic diseases like HIV have included formal programs which aim to enable people to manage their own health conditions in partnership with their health care providers. The World Health Organisation ⁶ suggests that best practice involves educating and supporting patients to self manage their conditions to the greatest extent possible. Self-management programs have been developed across a range of chronic diseases.

The situation for people with HIV who are also living with hepatitis C virus (HCV co-infection) is more complicated. Issues for such people include when to start treatment and for which viral infection. A recent article on hepatitis C self-management ⁷ indicated that people with hepatitis C selectively used a range of strategies in addressing multiple goals, which may be categorised as: fighting the virus, strengthening the body, and managing consequences. These involved ad hoc and individualised interventions made by people with HIV and hepatitis C outside any formal framework. We are unaware of any formal programs which provide a self-management framework for people who are living with both HIV and hepatitis C, but believe the key elements of self-management for HIV can also be applied to hepatitis C.

Some recent reviews

The New Zealand National Health Committee reviewed a number of these programs in their report 'Meeting the needs of people with chronic conditions'. ⁸ In particular they discussed two which are suitable to meet the needs of people with HIV. These are the Positive Self-Management Program for HIV (PSMP), ⁹ (one of the self-management modules developed by Stanford University, School of Medicine), and the Flinders Program of Chronic Condition Self-Management ¹⁰ (developed by Flinders University, Human Behaviour and Health Research Unit). These two programs are discussed in more detail below. They suggest that there is now a body of evidence on the effectiveness of self-management in terms of improved health outcomes and health system efficiencies.

The UK National Institute for Health and Clinical Excellence ¹¹ similarly reviewed the evidence for the benefits resulting from implementation of self-management programs, including peer-led programs. They discussed at some length the Arthritis Self-Management Program (ASMP), which is an analogue to the Stanford PSMP. The UK researchers concluded that promoting self-management and helping individuals to manage chronic conditions better has the potential to enable such people to achieve better health outcomes.

A recent, extensive review ¹² of self-management programs for HIV and other chronic diseases identified some common elements. They discussed a number of HIV-specific programs and argue that self-management education: enables people to proactively address predictable challenges in their HIV disease; sustains long term changes in everyday behavioural routines; allows HIV-positive people to identify with a larger population of people diagnosed with chronic diseases, and; facilitates the continued mainstreaming of care for people with HIV.

Two programs suitable for people with HIV

The Stanford PSMP is specifically adapted for people with HIV. The program is a group-based intervention in which people with HIV attend a closed group for two and a half hours per week for seven weeks. Workshops are facilitated by two trained leaders, one or both of whom are living with HIV and working outside of the health sector. The program is based around the eight subject modules:

Integrating antiretroviral drug treatments into daily life to maximise adherence
Managing issues such as frustration, fear, fatigue, pain, and isolation
Establishing appropriate and effective exercise programs
Communicating effectively with family, friends, and health professionals
Nutrition
Evaluating symptoms
Establishing advanced care directives, and
Evaluating new or alternative treatments.

A textbook ¹³ is supplied as part of the program. The course structure and content are set and permission is needed from Stanford University to make alterations. Living Well UK has gained permission to alter specific language and stylistic features tomake the course more appropriate to the UK context.

The PSMP course is a peer-led initiative facilitated by past participants. The peer-led process is one of the most important aspects of the course and having facilitators who are themselves living with HIV is a key feature. Participants are provided with ‘positive role models’ and shown that the techniques covered are effective. Each PSMP course has at least one facilitator who is living with HIV. Facilitators are accredited to conduct the program after successfully completing a four and a half day intensive training course.

The PSMP has been critically evaluated as it has been offered in the USA and in the UK. (Details at http://patienteducation.stanford.edu/programs/psmp.html )

The Flinders Program of Chronic Condition Self-Management is a one-on-one program whose aim is to develop a ‘Self-management Care Plan’ which documents any related medical investigations, self-management approaches undertaken by the patient, and self-management education and allied health and community services accessed by the individual during a twelve month period after they commence the program. It will normally include:

Identified issues around livingwith HIV
Agreed goals
Agreed interventions
Shared responsibility signified by sign off by both the patient and health professional, and
Review process including dates.

The following three tools are used to inform the individualised Care Plan: Partners in Health Scale (PIH), Cue and Response Interview (C&R) and Problem and Goals’ (P&G) Assessment. Details of these and examples of how the Flinders Program has been applied and evaluated are available on the Flinders website (referenced above).

Adoption of self-management programs in Australia

To date the Stanford and Flinders programs have not been delivered to people with HIV in Australia. Individual State and Territory AIDS Councils, and people living with HIV/AIDS Organisations, including the National Association of People Living with HIV/AIDS (NAPWA), are currently considering the adoption of self-management programs for people with HIV.

People with HIV already adopt self-care strategies for a range of issues, including depression. ¹⁴ It is uncertain to what extent people with HIV in Australia might be interested in participating in such structured self-management programs. However, Australia has a strong track record of developing and implementing peer-led interventions which aim to improve the health and well being of people with HIV.

Based on past performance of an active, informed, empowered and empowering model of service delivery and program development by and for people with HIV, Australian-based community organisations are already in a strong position to adopt and implement one or more of these programs.

A small study of women living with HIV in an urban setting in California suggested that these women were interested in a community-based peer-led self-management intervention. ¹⁵

A range of interventions which utilise self-management elements, including life coaching (which is offered by ACON’s Positive Living Centre and Western Australian AIDS Council), have been used in the Australian HIV sector. Details of such interventions can be obtained from relevant HIV community and government agencies in individual States and Territories.

References

Antiretroviral Therapy Cohort Collaboration. (2008) Life expectancy of individuals on combination antiretroviral therapy in high-income countries: a collaborative analysis of 14 cohort studies. Lancet. 2008 Jul 26;372(9635):293-9.Abstract:http://preview.ncbi.nlm.nih.gov/pubmed/18657708 See also Editorial comment: Cooper DA. (2008) Life and death in the cART era. Lancet. 2008 Jul 26;372(9635):266-7.

2 Lohse N, Hansen AB, Pedersen G, Kronborg G, Gerstoft J, Sørensen HT, Vaeth M, Obel N. (2007) Survival of persons with and without HIV infection in Denmark, 1995-2005. Ann Intern Med. 2007 Jan 16;146(2):87-95.Free article:http://www.annals.org/content/146/2/87.short

3 Siegel, K. (2002). AIDS as a chronic illness: psychosocial implications,AIDS, 16, Suppl 4:S69–76.

4 Deeks, S. (2009). Immune dysfunction, inflammation, and accelerated aging in patients on antiretroviral therapy,Topical HIV Medicine 17, 4,:118–23.Free article:http://www.iasusa.org/pub/topics/2009/issue4/118.pdf

5 Phillips, A., Neaton J., Lundgren J. (2008). The role of HIV in serious diseases other than AIDS. AIDS, 22 (18):2409–18. Free article: http://pdfs.journals.lww.com/aidsonline/2008/11300/The_role_of_HIV_in_serious_diseases_other_than.1.pdf

#fn6">6 World Health Organization (2001). Innovative care for chronic conditions [Factsheet]. Available at: http://www.who.int/mip2001/files/1986/InnovativeCareforChronicConditions.pdf (accessed 15 March, 2010).

7 Stoller EP, Webster NJ, Blixen CE, McCormick RA, Perzynski AT, Kanuch SW, Dawson NV. (2009) Lay management of chronic disease: a qualitative study of living with hepatitis C infection. Am J Health Behav. 2009 Jul-Aug;33(4):376-90.Abstract:http://preview.ncbi.nlm.nih.gov/pubmed/19182983

8 New Zealand National Health Committee (2007.)Meeting the needs of people with chronic conditions, ISBN (Web): 0-478-28515-9. Available at: http://www.nhc.health.govt.nz/moh.nsf/pagescm/666/$File/meeting-needs-chronic-conditions-feb07.pdf (accessed 15 March, 2010).

9 Stanford University. Patient Education Research Centre. Positive Self-Management Program for HIV (PSMP). Available at: http://patienteducation.stanford.edu/programs/psmp.html (accessed 15 March, 2010).

10 Flinders University. Flinders Human Behaviour & Health Research Unit. Flinders Program of Chronic Condition Self-Management. Available at: http://som.flinders.edu.au/FUSA/CCTU/self_management.htm (accessed 15 March, 2010).

11 Bury, M., Newbould, J., Taylor, D. (2005).A rapid review of the current state of knowledge regarding lay-led self-management of chronic illness: Evidence review, UK National Institute for Health and Clinical Excellence. 31p. December 2005

Full-text: http://www.nice.org.uk/niceMedia/pdf/lay_led_rapid_review_v10-FINAL.pdf

12 Swendeman, D., Ingram, B., Rotheram-Borus, M. (2009). Common elements in self-management of HIV and other chronic illnesses: an integrative framework, AIDS Care, 21, 10:1321–34. Abstract:http://www.informaworld.com/smpp/content~db=all~content=a915627158

13 Gifford, A., et al. (2005).Living Well with HIV & AIDS, 3rd ed., Boulder, CO: Bull Publishing Company, 2005).

14 Eller, L., et al. (2005). Self-care strategies for depressive symptoms in people with HIV disease,Journal of Advanced Nursing, 51, 2:119–30. Abstract:http://preview.ncbi.nlm.nih.gov/pubmed/15963183

15 Webel AR, Holzemer WL. (2009) Positive self-management program for women living with HIV: a descriptive analysis. J Assoc Nurses AIDS Care. 2009 Nov-Dec;20(6):458-67. Abstract:http://preview.ncbi.nlm.nih.gov/pubmed/19887287

Neil McKellar-Stewart is HIV Health Maintenance Officer for ACON Northern Rivers.

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