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Article Canadian Journal of Occupational Therapy

80(5) 314-327
DOI: 10.1177/0008417413512792

Self-management interventions for people ª CAOT 2013


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A scoping review
Étude de la portée des interventions axées sur l’autogestion pour
les personnes atteintes du VIH

Kaitlyn N. Bernardin, Dorothea N. Toews, Gayle J. Restall, and Lynn Vuongphan

Key words: HIV; Occupational therapy; Self-management.

Mots clés : autogestion; ergothérapie; VIH.

Abstract
Background. Self-management is an important emerging intervention for people with human immunodeficiency virus (PHAs). The
principles of self-management are consistent with the principles of client-centred occupational therapy. Purpose. This scoping review
addressed three questions about self-management interventions for PHAs: (a) What knowledge, skills, and attitudes are taught?
(b) What outcomes are intended? (c) What are the participation experiences of PHAs? Method. Questions were searched in six
databases. Two researchers independently reviewed abstracts and articles before inclusion. Extracted data were iteratively
themed. Findings. Thirty-five articles were included. Interventions taught self-care, interpersonal skills, technical knowledge,
cognitive skills, positive attitudes, planning for the future, and role management. Outcomes included well-being, health and illness
management, and health services use. Participation experiences reflected social experiences, needs of PHAs, specific needs of
women, participation, empowerment, intervention importance, and experiences with service delivery. Implications. Self-
management interventions are a promising approach for occupational therapists to enable PHAs’ occupational performance goals.

Abrégé
Description. L’autogestion est une nouvelle intervention importante pour les personnes atteintes du virus de
l’immunodéficience humaine (VIH). Les principes de l’autogestion sont conformes aux principes de l’ergothérapie
centrée sur le client. But. Cette étude de la portée abordait trois questions relatives aux interventions axées sur
l’autogestion pour les personnes atteintes du VIH : (a) Quelles sont les connaissances, habiletés et attitudes enseignées? (b)
Quels sont les résultats escomptés? (c) Quelles sont les expériences de participation des personnes atteintes du VIH?
Méthodologie. Ces questions ont fait l’objet d’une recherche dans six bases de données. Deux chercheurs ont analysé de
manière indépendante les résumés et les articles afin de déterminer s’ils devaient ou non être retenus pour l’étude. Les données
extraites ont été regroupées par thème, de manière itérative. Résultats. Trente-cinq articles ont été retenus. Les interventions
enseignaient les soins personnels, des habiletés interpersonnelles, des connaissances techniques, des habiletés cognitives, des
attitudes positives, la planification pour l’avenir et la gestion des rôles. Les résultats étaient notamment la gestion du bien-être,
de la santé et de la maladie et l’utilisation des services de santé. Les expériences de participation témoignaient des expériences
sociales, des besoins des personnes atteintes du VIH, des besoins spécifiques des femmes, de la participation, de la remise du
pouvoir, de l’importance de l’intervention et des expériences vécues face à la prestation des services. Conséquences. Les
interventions axées sur l’autogestion sont une approche prometteuse que les ergothérapeutes peuvent utiliser pour favoriser
l’atteinte des objectifs en matière de rendement occupationnel des personnes atteintes du VIH.

Funding: No funding was received in support of this work.

Corresponding author: Kaitlyn Bernardin, South Health Campus, 4448 Front Street SE, Calgary, AB, Canada, T3M 1M4. Telephone: 403-474-2895. E-mail:
kaitlyn.nicole@gmail.com.

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Canadian Journal of Occupational Therapy 80(5) 315

H
uman immunodeficiency virus (HIV) compromises (Johnson & Folkman, 2004; Tran, Thomas, Cameron, & Bone,
the immune system and makes an individual vulnera- 2007).
ble to opportunistic infections (McConnell, 2007). This paper builds on Swendeman et al.’s (2009) review
The current medication regime for HIV consists of antiretro- of self-management interventions for chronic conditions,
viral therapy, which involves a combination of medications which examined HIV-specific concerns in relation to self-
(Department of Health and Human Services, 2013). These management needs and programs designed to address a variety
medications have extended life expectancy for people with of chronic diseases simultaneously. We built on this previous
HIV or acquired immunodeficiency syndrome (AIDS) (PHAs; review by including more recent literature on the topic, focus-
Palella et al., 1998). O’Brien and colleagues developed the ing specifically on self-management programs for PHAs as
Episodic Disability Framework (O’Brien, Bayoumi, Strike, well as PHAs’ experiences with self-management programs.
Young, & Davis, 2008) to describe the highly individual dis- The purpose of our scoping review was to identify the scope,
ability experiences of PHAs, which can be characterized by range, and type of self-management interventions with PHAs
unpredictable fluctuations between periods of health and symp- that are being reported in the literature and the implications
tom exacerbation. of that literature for occupational therapy. The objectives were
PHAs have needs in the areas of physical function, psycholo- to identify (a) the knowledge, skills, and attitudes being taught
gical coping and well-being, cognition, and social participation to PHAs in self-management interventions; (b) the intended
(Anandan, Braveman, Kielhofner, & Forsyth, 2006; Crystal, outcomes of self-management interventions for PHAs; and
Fleishman, Hays, Shaprio, & Bozzette, 2000). Although occupa- (c) PHAs’ experiences with self-management interventions.
tional therapists have provided effective interventions to address For this review, self-management was considered to be any
the needs of other populations with chronic episodic health con- strategy taught to encourage individuals to manage their dis-
ditions, such as arthritis (Steultjens et al., 2004), there are few ease, including structured interventions and general self-
published reports of occupational therapy interventions with management strategies, such as sleep hygiene or exercise.
PHAs. However, occupational therapists are becoming more
involved in HIV care (Canadian Working Group on HIV and
Rehabilitation, 2011).
Self-management programs focus on partnerships between
Method
health providers and clients to meet clients’ perceived needs in A scoping review examines the literature on a specific topic,
dealing with emotions, managing roles and health conditions, identifying and summarizing relevant themes (Arksey & O’Mal-
and increasing clients’ confidence in managing their condition ley, 2005; Plow, Finlayson, & Rezac, 2011). It also identifies
(Lorig, 1996). These concepts are congruent with the client- gaps in the existing literature and provides recommendations for
centred practice of occupational therapy (Law, Baptiste, & future research (Arksey & O’Malley, 2005). This scoping review
Mills, 1995) suggesting that the incorporation of self- followed the six-step approach described by Arksey and O’Mal-
management in occupational therapy interventions may offer ley (2005) and Levac, Colquhoun, and O’Brien (2010).
important opportunities for therapists to enable PHAs to
achieve their occupational performance goals.
Step 1: Identifying the Research Question
Over the past few decades, self-management interventions
have been used successfully with people with a variety of chronic We identified three questions regarding PHA self-management
conditions. For example, the Chronic Disease Self-Management interventions: (a) What knowledge, skills, and attitudes are
Program has been shown to effectively address physical, psycho- being taught in self-management interventions for PHAs? (b)
logical, and social issues (Lorig et al., 1999). The knowledge and What are the intended outcomes of self-management interven-
skills taught in self-management interventions are designed to tions for PHAs? (c) What are PHAs’ experiences participating
empower persons living with chronic conditions to improve their in self-management interventions? These questions were cho-
health and regain control of their lives (Gifford & Sengupta, 1999; sen to cover important information about program content,
Swendeman, Ingram, & Rotheram-Borus, 2009). Consistent with intended outcomes, and processes to explore the implications
social cognitive theory, self-management interventions aim to for occupational therapy practice, education, and research.
improve health outcomes by increasing self-efficacy, which is a
sense of one’s ability to accomplish a desired task (Bandura, Step 2: Identifying Relevant Studies
1977; Lorig, 1996). Each of the three research questions was searched separately
A variety of group-based and one-on-one self-management on the following databases: CINAHL, PubMed, Scopus,
approaches have been implemented with PHAs (Gifford & Embase, Cochrane, and OTSeeker. All databases were
Sengupta, 1999; Swendeman et al., 2009). Topics relevant to searched from 1996 to December 6, 2012. Searches were lim-
include in self-management interventions for PHAs may be ited to articles published after 1996 to capture literature that
both similar to and different from other chronic conditions. was published after the availability of antiretroviral therapy
Many needs of PHAs stem from treatment side effects, disease in North America. Search terms used for all three questions
symptoms, and social issues, all of which impact quality of life included self-management, disease management, self-care,

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316 Bernardin et al.

HIV, human immunodeficiency virus, acquired immune defi- narrative form to represent the data with more depth and clarity.
ciency syndrome, and acquired immunodeficiency syndrome. The results are reported in the Findings section below.
In addition, for the first question, search terms included
knowledge, skills*, attitude*, and behavio*. Search terms for
Step 6: Consultation
the second question included outcome* and effective*.
Finally, search terms for the third question included experi- Building on the scoping review methodology of Arksey and
ence, perception*, perceive*, qualitat*, and feel*. Reference O’Malley (2005), Levac et al. (2010) emphasized that consulta-
lists of articles relevant to the three questions were also tion with clinicians is essential. Consultation allows for dissemi-
reviewed to identify additional articles. nating preliminary findings to stakeholders, validation of
findings by experts in a clinical setting, and identifying literature
gaps and future research directions (Levac et al., 2010). The
Step 3: Study Selection research team developed a preliminary report of the review find-
Titles and abstracts of all resulting articles were reviewed inde- ings, which was presented to three service providers at a local
pendently by two researchers to eliminate studies irrelevant to nonprofit HIV treatment and prevention centre. Service provi-
the research questions and duplicates. Consensus was reached ders in this organization were involved in the initial identifica-
through discussion by the research team. To be included in the tion of the project topic and were considered collaborators in
scoping review, articles had to be written in English, focus pri- the process. Thus, the consultation was part of an integrated
marily on HIV, and be consistent with the previously established knowledge translation process. After presenting a written report
definition for self-management. Exclusion criteria were having a of the findings to service providers, the research team used guid-
focus on evaluating specific drug regimens, case management, ing questions to facilitate a discussion with the consultation
HIV prevention, or management of co-occurring conditions, group. Topics discussed during the consultation meeting
such as Hepatitis C. After exclusion based on titles and abstracts, included the use of adjunct programming to address the diverse
two researchers independently reviewed each full article before needs of PHAs, benefits of various modes of service delivery,
confirming inclusion in the scoping review. From the 63 articles outcome measures used to evaluate self-management interven-
reviewed in full, 35 articles were identified that fit within the tions, and trends that were seen in a clinical setting that were not
researchers’ previously established inclusion and exclusion cri- reflected by the literature findings. The consultation process,
teria. Various study designs were included, such as randomized including presentation of findings and subsequent discussion,
controlled trials (RCTs), pre-post studies, one case series, and lasted approximately an hour and a half and provided additional
qualitative studies. Descriptive articles were also included perspectives on the practical application of the review findings.
because they provided an in-depth summary of intervention con-
tent. Literature reviews and single case studies were excluded.
Findings
Step 4: Charting the Data Table 1 summarizes the 35 articles included in the review and
Data from the 35 included articles were extracted into a matrix the knowledge, skills, attitudes, and intended outcomes
chart with headings related to the study design (purpose, addressed in the interventions. The detailed results from the lit-
method, sample characteristics, and type of study) as well as erature are organized around the three research questions.
headings representing each research question. The headings for
the matrix were agreed upon by the research team to facilitate a
descriptive-analytical approach (Arksey & O’Malley, 2005). Knowledge, Skills, and Attitudes Taught in
Data were extracted from each article by one researcher and Self-Management Interventions for PHAs
then reviewed by a second researcher and either modified or The research team reviewed knowledge, skills, and attitudes
confirmed. Researchers reviewed information related to each of identified in the literature (see Table 1) and developed several
the three research questions from the data collection matrix and categories and subcategories based on topics identified most
identified key categories after the first detailed review of full arti- frequently in the literature. Consensus was reached among
cles. The team iteratively modified descriptions of each category all members of the research team. The specific knowledge,
during data collection and analysis until reaching agreement on skills, and attitudes were grouped into seven main categories:
the comprehensiveness and inclusiveness of the categories. self-care, interpersonal skills, technical knowledge, cognitive
skills, positive attitudes, planning for the future, and roles. The
subcategories for each category are summarized in Table 2.
Step 5: Collating, Summarizing, and Reporting
Results
The research team organized data within each category related to Intended Outcomes of Self-Management Inter-
the three study questions. For the first two questions, the data were ventions for PHAs
organized into tables. Due to the qualitative nature of the data Researchers reviewed the intended outcomes identified in the lit-
related to participants’ experiences, these data were reported in erature (see Table 1) and, through consensus, developed three

Canadian Journal of Occupational Therapy


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Table 1
Summary of Reviewed HIV Self-Management Articles

Type of Sample size, characteristics, and


Authors Purpose study context Knowledge, skills, and attitudes taught Intended outcomes

Bedell (2008) Evaluate pilot self- Pre-post N ¼ 53 Goal setting and monitoring, self- Improve self-management skills, work
management and work tran- 53% female, 47% male; 4% advocacy, communication, medication transition, and employment
sition intervention working part-time; 64% Black management, stress management, symp-
and 19% Hispanic tom management, nutrition, workplace
United States issues
Bontempi, Evaluate medication Qualitative N ¼ 29* Medication management, self-esteem/self- Improve medication adherence, HIV
Burleson, & adherence intervention 31% female, 69% male; 22 confidence, social support, knowledge, self-empowerment, and CD4
Lopez (2004) Hispanic, 6 African American, information about HAART levels; reduce viral load and avoid
1 White hospitalization
*Findings reported only on focus
Canadian Journal of Occupational Therapy 80(5)

group with 15 people


United States
Bova, Burwick, & Evaluate Positive Life Skills Pre-post N ¼ 187 Stress management, medication Improve perception of self and disease,
Quinones (2008) workshop for women 100% female, 62% White management, symptom management, self-management, medication adherence,
United States sleep hygiene, nutrition, complementary and social support
therapies, grief, HIV disclosure, cognitive
restructuring, social relationships,
reproductive issues, housing, employment
Chandwani, Evaluate acceptability of RCT N ¼ 166 General HIV knowledge, motivation, Increase HIV knowledge, disease
Abramowitz, Adolescent Impact All adolescents, medication management, stress management, and risk reduction skills and
Koenig, Barnes, intervention for two unique 53% female; 94% African or management, safe sex practices, motivate healthy lifestyles
& D’Angelo participant groups Hispanic; communication with health care
(2011) 59.6% perinatally infected, 40.4% providers, disclosure issues
behaviourally infected with HIV
United States
Chiou et al. Evaluate effectiveness of RCT N ¼ 67 Education about HAART medication, Improve PHAs’ self-monitoring and self-
(2004) symptom management 94% male medication management, symptom care of HAART side effects

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program Taipei management
Chiou et al. Evaluate effectiveness of RCT N ¼ 67 (same sample as above) Education about HAART medication, Improve PHAs’ quality of life, drug
(2006) symptom management Taipei medication management, symptom adherence, and CD4þ count
program management
Côte, Godin, Examine creation of a self- Descriptive None Self-efficacy skills, medication manage- Improve medication adherence, symptom
Garcia, Gagnon, management program Canada ment, symptom management, coping management, social relationships and
& Rouleau strategies, positive relationships and posi- communication skills
(2008) tive attitudes

(continued)

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317
318
Table 1 (continued)

Type of Sample size, characteristics, and


Authors Purpose study context Knowledge, skills, and attitudes taught Intended outcomes

DeMarco, & Examine series of educational Qualitative Unknown sample Complementary therapies for symptom Increase self-efficacy and improve social
Johnsen (2003) programs for women Combination of educational management, HIV treatment, nutrition, networks/supports
program series and 1-day social self-care, stress management, sex and
events reproduction, healthy lifestyles
Mainly African American women
United States
Galantino et al. Examine quality of life of RCT N ¼ 38 Tai chi and aerobic exercises Improve psychological and functional
(2005) PHAs in exercise programs 100% male; 61% White, 29% outcomes; improve strength, flexibility,

Canadian Journal of Occupational Therapy


Black, and 10% Hispanic balance, and endurance
United States
Gifford & Describe framework for Descriptive None Information about HIV, symptom Improve self-care skills, healthy beha-
Groessl (2002) development of PSMP United States management, medication management, viours/lifestyle, motivation, confidence
stress management, self-care, sex, disclo-
sure, cognitive skills, self-efficacy, inter-
personal skills
Gifford, Laurent, Evaluate PSMP RCT N ¼ 71 Same as above (Gifford & Groessl, 2002) Improve motivation, confidence,
Gonzales, 100% gay men; 88% White symptom status, self-efficacy, and health
Chesney, & Lorig United States behaviours
(1998)
Gifford & Evaluate PSMP Qualitative N ¼ 71 Same as above (Gifford & Groessl, 2002) Increase confidence, HIV knowledge, and
Sengupta (1999) Same sample as above collaboration with health care providers

Gore-Felton Evaluate reductions in RCT N ¼ 943 Coping skills, stress management, self- Improve quality of life and psychological
et al. (2005) transmission behaviours 21% female regulatory behaviours, health behaviours, coping, minimize HIV transmission risk,
following Health Living United States problem solving, goal setting increase access to health services, and
Project achieve positive life meaning
Gustafson et al. Examine effectiveness of RCT N ¼ 204 Computer system including questions and Improve quality of life and decrease use of

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(1999) Comprehensive Health 90% male answers, instant library, information on health care services
Enhancement Support System United States support, risk reduction, decision making,
discussion groups, and expert consultation
Hudson, Portillo, Examine effectiveness of sleep Pre-post N ¼ 30 Sleep hygiene Improve sleep quality and duration
& Lee (2008) promotion intervention 100% female
United States
Inouye, Flannelly, Evaluate individual self- RCT N ¼ 40 Information about HIV, cognitive skills, Improve mood, coping, and perceptions
& Flannelly management training 10% female; 30 White, 5 Asian, coping skills, psychoeducation, community of health
(2001) 5 Hawaiian resources, relaxation techniques
United States
Bernardin et al.
Jirapaet (2000) Evaluate empowerment Pre-post N ¼ 94 Stress management, health education, Improve quality of life, coping, and
program for HIV-infected 100% female alternative therapies, communication maternal role adaptation
mothers Thailand
Johnson, Evaluate effectiveness of one- RCT N ¼ 249 Goal setting, coping skills, problem solving, Improve treatment adherence
Dilworth, on-one side effects coping 90% male social support skills, communication skills
Taylor, & intervention United States
Neilands (2011)
Kennedy, Explore participants’ Qualitative N ¼ 14 Problem solving, medication logs, Improve self-efficacy, empowerment, self-
Rogers, & experiences of PSMP Local gay men and African relaxation, diet, exercise, positive self-talk, management behaviours, mental health,
Crossley (2007) refugees communication skills and physical health
United Kingdom
Kennedy & Evaluate impact of PSMP on Qualitative N ¼ 29 Relaxation, diet, exercise, symptom Improve self-efficacy, empowerment,
Rogers (2009) African asylum seekers Limited sample information management, communication skills, health status, and behaviours; reduce
available; majority gay White disclosure, sexual behaviour, information health service utilization
men from the United Kingdom on HIV and medications, goal setting
Canadian Journal of Occupational Therapy 80(5)

or African asylum seekers


United Kingdom
Lightfoot, Examine secondary Descriptive No sample Information on HIV and medication, risk Reduce substance use and risky sexual
Rotheram- prevention program needs of reduction, symptom management, goal behaviours, improve quality of life
Borus, & Teven- youth living with HIV and setting, communication skills, cognitive
dale (2007) describe planned intervention behavioural skills
Markham, Evaluate usability and Pre-post N ¼ 32 Individually tailored information through Increase abstinence, disclosure, condom
Shegog, Leonard, feasibility of þCLICK web- 62.5% female; 68.8% Black; all web-based application, including informa- use, and birth control
Bui, & Paul based application HIVþ youths tion on condom use and abstinence
(2009) United States
Mason & Describe program Qualitative N ¼ 13 Parenting skills, self-care, goal setting Increase knowledge of family impacts of
Vazquez (2007) development and experiences 86% female; HIV, access to resources and social
of participants in 95% African American support
psychoeducation program United States
Miles et al. Determine efficacy of self- RCT N ¼ 109 Information on HIV and medication, Reduce emotional distress and improve
(2003) care symptom management 100% African American mothers problem solving, importance of regular perceptions of health

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intervention United States health care visits
Rozman, Determine effectiveness of Pre-post N ¼ 24 Cognitive behavioural psychoeducation Improve psychological well-being and
Whitaker, HeartMath stress reduction 87.5% male and behaviour training reduce physical symptomatology
Beckman, & program United States
Jones (1996)
Safren et al. Describes development and Pre-post N¼5 Information on HIV and medication, Improve medication adherence and
(2004) initial evaluation of cognitive- 100% male; 3 White, 2 African cognitive behavioural skills, sense of reduce viral load
behavioural intervention American optimism
United States

(continued)

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319
320

Table 1 (continued)

Type of Sample size, characteristics, and


Authors Purpose study context Knowledge, skills, and attitudes taught Intended outcomes

Safren et al. Examine and compare RCT N ¼ 56 Information about medication, problem Improve medication adherence
(2001) cognitive behavioural and self- 87.5% male solving, communication skills, enhanced
management intervention United States motivation
Sanders, Rogers, Examine impact of Qualitative N ¼ 43 (only 12 had HIV) Exercise, nutrition, sleep hygiene, Identify client experiences of addressing
Gately, & incorporating advanced care Sex distribution not available advanced care planning, relaxation skills, advanced care planning in intervention
Kennedy (2008) planning into self- United Kingdom medication adherence, communication
management intervention skills, self-efficacy

Canadian Journal of Occupational Therapy


Shegog, Evaluate usability and Pre-post N ¼ 10 Information on HIV and medication, Improve medication adherence
Markham, effectiveness of þCLICK All youth; 80% female; 8 Black medication adherence, increased
Leonard, Bui, & web-based application United States motivation
Paul (2012)
Sibinga et al. Examine feasibility and Qualitative N¼5 Relaxation skills Identify acceptability, importance, and
(2008) acceptability of mindfulness- All youth; 80% female; all African feasibility of program
based stress reduction American
program United States
Smith, Rublein, Determine whether one-on- RCT N ¼ 43 Medication adherence strategies, goal Improve medication adherence
Marcus, Brock, & one self-management inter- 91% male; 74% non-White setting
Chesney (2003) vention improved medication United States
adherence
Soroudi et al. Demonstrate feasibility of Case series N ¼ 4 Cognitive behavioural skills, Improve mood and medication adherence
(2008) cognitive behavioural therapy 75% female communication skills, medication
for medication adherence and United States adherence, positive attitudes
depression
Wantland et al. Evaluate efficacy of symptom RCT N ¼ 768 Knowledge about HIV and symptom Increase self-efficacy
(2008) management manual 38.5% female management, complementary therapies,
United States, Puerto Rico, self-care strategies, positive attitudes, self-

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South Africa efficacy
Webel (2010) Evaluate peer-based inter- RCT N ¼ 89 Information about HIV and medication, Improve quality of life and medication
vention symptom 100% female symptom management, cognitive skills, adherence, reduce HIV-related symptom
management United States positive attitudes, communication skills intensity
Webel & Evaluate PSMP in a female Qualitative N¼7 Information about HIV, symptom Improve symptom management and self-
Holzemer (2009) sample 100% female; 87% African management, medication management, care
American stress management, self-care, safer sex,
United States disclosure, cognitive skills, self-efficacy,
interpersonal skills

Note. CD4 ¼ cluster of differentiation 4; HAART ¼ highly active antiretroviral therapy; PSMP ¼ Positive Self-Management Program; RCT ¼ randomized controlled trial.
Bernardin et al.
Canadian Journal of Occupational Therapy 80(5) 321

Table 2 Table 3
Knowledge, Skills, and Attitudes Taught in Self-Management Interventions Intended Outcomes of Self-management Interventions

Category Knowledge, skills, and attitudes Category Intended outcomes

Self-care Stress management Well-being and quality Physical


Medication management of life Increase strength, endurance
Symptom management Improve sleep quality
Sleep hygiene Physiological
Nutrition Increase CD4þ counts
Substance use Decrease viral load
Exercise Psychological
Interpersonal Communication skills Improve mood, increase positive attitudes
Relationships Improve self-efficacy
Safer sex practices Social
Disclosure Increase social supports and networks
Social supports Improve work transition and employment
Technical knowledge Information about HIV disease and symptoms rates
HAART medication and side effects Health and illness Increase technical knowledge about HIV and
Complementary therapies management antiretroviral medications
HIV reinfection risk Increase adherence to medication regimes
Interpretation of HIV lab tests Increase use of healthy sex practices
Participating in clinical trials Improve self-care skills and abilities
Cognitive skills Goal setting and monitoring Improve healthy lifestyles
Problem solving Improve interpersonal skills
Decision making Decrease substance use
Use of health services Decrease frequency of hospital admission
Cognitive restructuring
Increase access to health services
Identifying resources and supports
Improve communication with health care
Relaxation
providers
Coping skills
Positive attitudes Self-efficacy Note. CD4 ¼ cluster of differentiation 4.
Positivity and optimism
Future orientation Vazquez, 2007). Group interventions had powerful benefits
Importance of health care visit
Planning for the future Advanced care planning
due to the opportunity for socializing, social support, compa-
Roles Parenting nionship, forming connections with others in similar situations,
Employment and knowledge sharing among participants (Bova et al., 2008;
Galantino et al., 2005; Gifford & Sengupta, 1999; Jirapaet,
Note. HAART ¼ highly active antiretroviral therapy. 2000; Kennedy et al., 2007; Mason & Vazquez, 2007). PHAs
participating in an intercultural group experienced recognition
categories based on outcomes identified most frequently. The of the global nature of their problems and decreased social iso-
three categories were (a) well-being and quality of life, (b) health lation (Kennedy & Rogers, 2009).
and illness management, and (c) use of health services. The out- Social experiences could also be negative. In group inter-
come indicators for each category are listed in Table 3. ventions, experiences were sometimes influenced by some group
members monopolizing the conversation, feelings of being
looked down upon by other PHAs, and experiences of loss when
Experiences of PHAs Participating in Self- participants dropped out of the group (Bova et al., 2008; Mason
Management Interventions & Vazquez, 2007). Health care providers’ stigmatizing attitudes,
We identified seven categories related to experiences of PHAs whether expressed or suspected, were also experienced nega-
participating in self-management interventions: (a) social tively (Mason & Vazquez, 2007; Smith, Rublein, Marcus,
experiences, (b) needs of PHAs, (c) needs specific to women Brock, & Chesney, 2003; Webel & Holzemer, 2009).
with HIV, (d) participation, (e) empowerment, (f) importance
of the intervention, and (g) experiences with different modes Needs of PHAs. Although self-management needs of
of service delivery. PHAs may be similar to those of people with other chronic con-
ditions, PHAs may also have additional needs, such as access to
Social experiences. Social support from other partici- food, housing, medication reminder devices, and protection for
pants as well as program leaders was a very important compo- sexually active clients (Bontempi et al., 2004). Tailoring interven-
nent of self-management interventions for PHAs (Bontempi, tions to participants’ cultural context was also identified as impor-
Burleson, & Lopez, 2004; Bova, Burwick, & Quinones, tant. For example, different cultural understandings of death
2008; Galantino et al., 2005; Gifford & Sengupta, 1999; Jira- influenced the interpretation and relevance of advanced care plan-
paet, 2000; Kennedy, Rogers, & Crossley, 2007; Mason & ning information for participants in one study (Sanders, Roger,

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322 Bernardin et al.

Gately, & Kennedy, 2008). Finally, PHAs in one group interven- 2008), decreased stress (Jirapaet, 2000), improved physical sta-
tion felt that the content was most relevant to those with little prior tus and psychological coping (Galantino et al., 2005), and
access to HIV education and services and that offering beginner being able to make better choices (Markham et al., 2009).
and advanced versions of the course might be a helpful structural PHAs also identified that goal setting was an important means
change (Gifford & Sengupta, 1999). to change health behaviours (Gifford & Sengupta, 1999).

Needs specific to women with HIV. Women attending Service delivery models. Various modes of service
a self-management workshop identified multiple needs, includ- delivery have been used to provide self-management interven-
ing increased services for women over 40 years of age, tions to PHAs. These include one-on-one and group-based,
improved accessibility to services for women who were face-to-face interventions as well as computer-based interven-
employed, enhanced psychosocial services, increased services tions (Gustafson et al., 1999; Markham et al., 2009; Shegog,
related to Hepatitis C, and programs for the children of women Markham, Leonard, Bui, & Paul, 2012). Literature suggests that
with HIV (Bova et al., 2008). In one mixed-sex intervention, PHAs have had positive experiences with computer-based inter-
female participants expressed a desire to discuss sexual inti- ventions. One computer-based intervention was designed to be
macy issues, which were not addressed in that particular inter- accessed by youth through the World Wide Web. Participants
vention (Kennedy & Rogers, 2009) and may be difficult to using this web-based intervention were highly satisfied, finding
address in mixed-sex groups. Incorporating women with HIV it easy to use, relevant, and adaptable to their own pace (Mark-
as peer leaders may be beneficial, particularly, having peers ham et al., 2009; Shegog et al., 2012). The majority of partici-
with longer-term illness supporting women who were recently pants in one study liked the intervention, with 70% indicating
diagnosed (Webel & Holzemer, 2009), although peer leaders that they would use it again and recommend it to others (Shegog
need to be well trained (Webel, 2010). et al., 2012). Another evaluation of this intervention revealed
that PHAs valued accessing sensitive information in a confiden-
Participation. Participation rates were inconsistent tial, nonthreatening manner (Markham et al., 2009).
across interventions. Some researchers reported very high
attendance rates (Chandwani, Abramowitz, Koenig, Barnes,
& D’Angelo, 2011). However, many interventions had high
attrition rates, with cited reasons including death, illness, sub-
Discussion
stance abuse, job conflicts, and loss of interest (Gore-Felton Diverse Needs, Diverse Approaches
et al., 2005; Miles et al., 2003; Rozman, Whitaker, Beckman, This scoping review identified important content of self-
& Jones, 1996; Wantland et al., 2008). PHAs have identified management interventions for PHAs. This content needs to
a number of barriers that influence their participation, such as be considered in the context of the highly diverse and unique
external stressors and cultural irrelevance. For example, Ken- needs of PHAs. The content of self-management interventions,
nedy and Rogers (2009) found that some PHAs live with exter- and the ways in which they are delivered, need to take into
nal stressors not addressed in self-management interventions, account the demographic diversity of PHAs as well as diversity
such as fear of deportation for PHAs who are asylum seekers. in their needs, goals, and aspirations. This review highlighted
As well, some self-management content focuses on Western several important areas for consideration as occupational thera-
individualistic values, which is not culturally relevant to all pists and others continue to develop and implement self-
participants (Kennedy & Rogers, 2009). management interventions for PHAs.
First, medication adherence is one of the most consistent
Empowerment. Participation in self-management inter- components of self-management interventions. All but one of
ventions can empower individuals by enabling them to take the reviewed articles included education about HAART (highly
more control of their illness, with participants experiencing active antiretroviral therapy) regimens, side effects, or medica-
increased self-confidence and feeling prepared to make better tion management skills, with 12 studies specifically identifying
choices (Kennedy et al., 2007; Markham, Shegog, Leonard, Bui, improved adherence as an intended outcome. Partial adherence
& Paul, 2009). Empowerment can manifest in PHAs having can lead to resistance to the drugs used to treat HIV, which has
‘‘feelings of dignity’’ restored (Jirapaet, 2000), taking on more become an important justification for medication adherence
responsibility for their own health and making positive life (Chiou et al., 2004; Cote, Godin, Garcia, Gagnon, & Rouleau,
changes (Gifford & Sengupta, 1999), and having more positive 2008; Safren et al., 2001). In addition, medication adherence is
interactions with health care providers (Gustafson et al., 1999). also being conceptualized, not only as treatment but also as a
means of preventing spread of the disease (McNairy, Cohen,
Importance of self-management interventions. & El-Sadr, 2013). However, some PHAs choose not to take their
Participants found self-management interventions important in medications due to the impact of side effects on quality of life
contributing to positive changes in their lives. Changes (Holzemer et al., 1999; Johnson & Folkman, 2004). It is unclear
included improved ability to obtain or maintain employment whether the focus on medication adherence in self-management
(Bedell, 2008), feeling understood (Sibinga et al., 2008), interventions fully addresses the complexities of medication
improved perception of sleep (Hudson, Portillo, & Lee,

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adherence in the context of the daily lives of PHAs. Increased peers as leaders. Recent research is exploring the possibility of
attention can be placed on understanding how adherence can thorough training regimens for nonprofessional leaders (Cully
affect participation in occupations such as employment (Bernell et al., 2012; Roth et al., 2012). Another option may be to offer a
& Shinogle, 2005). combination of professional and peer leadership, which offers the
Second, self-management interventions need to be flexible advantages of both highly trained leadership and peer mentorship.
in content to meet a broad range of needs. Current HIV self- Although group interventions have advantages for PHAs,
management interventions often do not address important con- one-on-one interventions may be important as well. One-to-
cerns in cognition, psychological coping and well-being, social one service delivery supports the development of a therapeutic
participation, and physical function. In the single study where relationship between PHAs and health care professionals.
participants selected their own discussion topics, the all- Many PHAs value support received from health care providers
female participants discussed domestic violence, reproductive in self-management interventions (Bontempi et al., 2004). One-
decisions, managing loss and grief, housing options, journal- to-one service delivery may be especially important when
ing, pediatric HIV, and legal issues (Bova et al., 2008). These working with newly diagnosed PHAs, when establishing trust,
topics are not frequently identified in the literature as content or in HIV clinics where ongoing care will be provided beyond
areas for HIV self-management interventions. the self-management intervention.
Some issues, such as reproductive decision making, are rel- Technology-based self-management interventions, such as
evant primarily to women living with HIV and may be difficult interactive educational computer software, are increasingly
to address in mixed-sex interventions, highlighting the need for common and, because they do not require direct support from
women-only interventions (Bova et al., 2008; DeMarco & John- professionals, may be implemented in a wide variety of set-
sen, 2003; Kenney & Rogers, 2009). Other issues identified in tings. Benefits of this method of service delivery include con-
the women-only study by Bova et al. (2008), such as housing, are fidentiality and self-directed learning pace (Markham et al.,
relevant to people of all genders. Homelessness, unstable hous- 2009; Shegog et al., 2012). However, technology-based inter-
ing, and poverty have been identified as important social issues ventions may be inaccessible to PHAs from marginalized
for PHAs (Stewart, Cianfrini, & Walker, 2005), but these issues groups, who may be unfamiliar with, or not have access to, dif-
were not addressed in structured interventions reported in the lit- ferent forms of technology.
erature. The difficulty of addressing complex social needs, such
as housing and poverty, in a self-management context was high-
Outcomes of Self-Management Interventions
lighted by our consultation group. They emphasized the impor-
tance of ensuring that these issues are addressed and that the best In relation to outcomes, measures of viral load and CD4þ
option may be through adjunct programming at HIV clinics or (cluster of differentiation 4) counts are often used as measures
community health centres. However, the importance of meeting of success of self-management for PHAs. However, our consul-
these basic needs in the context of self-management highlights tation group of HIV care practitioners, who reviewed and dis-
the importance of holistic and integrated approaches to support cussed the findings of this review, indicated that these
and services for PHAs. physiological indicators may not be the most appropriate out-
Lower education levels and health literacy are common in come measures. CD4þ counts and viral loads may fluctuate
persons with disabilities, including PHAs (Canadian Public unexpectedly due to the episodic nature of HIV. PHAs may
Health Association, 2008; Rusch et al., 2004). Adjunct pro- show improvements in medication adherence, symptom and
gramming that addresses literacy education, with a focus on stress management, communication skills, and participation
health literacy, may be relevant in an HIV-care context. in social roles without showing physiological improvements
Although health literacy is a common issue, only one reviewed (Safren et al., 2004; Smith et al., 2003). One area to consider
study focused on low health literacy by clarifying and simpli- that would increase the scope of outcomes measured is quality
fying medication information (Bontempi et al., 2004). of life (QOL). QOL is a complex concept and has been defined
Given the diverse needs of PHAs, a number of different within different studies on the basis of the specific evaluation
service models are used to deliver HIV self-management tool used to measure it (Chiou et al., 2006; Galantino et al.,
interventions. Each delivery mode may be useful in encouraging 2005). Clients from different cultures may have different under-
the participation of PHAs for different reasons. For example, standings of QOL (O’Connell & Skevington, 2012), so it may be
valuable aspects of group-based interventions include social important to include outcome measures designed for use across
support and being able to learn from other group members diverse cultures. In addition, the PHA population disproportio-
(Bova et al., 2008; Chandwani et al., 2011; Galantino et al., nately includes groups with low literacy. Fifteen of the reviewed
2005; Gifford & Sengupta, 1999; Jirapaet, 2000; Kennedy HIV self-management studies had participants with one or more
et al., 2007; Mason & Vazquez, 2007). Also, some interven- of the following literacy-influencing characteristics: did not
tions are standardized to require a group format, which allows complete high school, English as an additional language, adoles-
for efficient use of health care resources. cent, or new immigrant. Outcome measures need to be appropri-
Self-management groups are often led by peer facilitators. ate for low-literacy and culturally diverse populations.
However, since HIV tends to affect marginalized populations dis- Although diverse outcomes, such as interpersonal skills,
proportionately, extra effort may be needed to recruit and train decision making, and problem solving, are included in most HIV

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324 Bernardin et al.

self-management studies, only two of the reviewed interventions is very likely that searching a wider variety of databases or the
focused their skill teaching and outcomes specifically on enabling grey literature may have resulted in the inclusion of additional
participation in roles such as employment (Bedell, 2008) and par- literature. Second, our definition of self-management was lim-
enting (Jirapaet, 2000). There is a need for more studies related to ited by the search terms self-care, self-management, and dis-
the impact of HIV self-management interventions on engagement ease management. Including a greater number of search
in valued activities and life role participation. terms to represent the concept of self-management may have
Self-management interventions generally place on an indi- identified additional interventions, such as smoking cessation.
vidual the responsibility to create positive change in their own However, we chose to use a few broad search terms rather than
life. Current self-management interventions do not appear to focus on a specific theoretical framework to capture the widest
address environmental factors, such as social stigma or the variety of self-management interventions possible. Finally, we
accessibility of resources for PHAs, which may impact the excluded articles focused on co-occurring disorders or written
achievement of desired outcomes. in languages other than English.

Implications for Occupational Therapy Practice,


Research, and Education Conclusion
This scoping review identified numerous knowledge, skills, and This scoping review explored the current literature on self-
attitudes currently being taught in self-management interven- management interventions for PHAs. This literature identified
tions, outcomes being addressed, and PHAs’ experiences of par- the knowledge, skills, and attitudes being taught, intended out-
ticipation. Occupational therapists can bring a focus on enabling comes, and PHAs’ experiences of participating in self-
occupations (Polatajko et al., 2007) to self-management with management interventions. The literature continues to be
PHAs. For example, occupational therapists can implement sparse in relation to program effectiveness when using different
client-centred self-management interventions that focus on the modes of delivery. Increased attention to activity and social
needs and goals of the participants, providing flexibility and participation outcomes is also warranted. Occupational thera-
diversity as required. The client-centredness element includes pists have important contributions to make in delivering self-
consideration of the literacy and health literacy needs of the management interventions through attention to the interaction
groups with whom they work. Occupational therapists have a between the person living with HIV, their existing and desired
strong grounding in theoretical perspective of the person- occupations, and their environments. Occupational therapists
environment-occupation interaction (Law et al., 1996) and can can also take leading roles in establishing and using more
bring that perspective to self-management interventions so that client-centred outcomes and measures.
the interventions focus not only on personal responsibility for
health behaviour but also on the environmental influences on
well-being and engagement in meaningful occupations.
For occupational therapists to assume roles in HIV support
Key Messages
and services, educational programs need to include content  Self-management interventions are being utilized increas-
related to this population. The Canadian Working Group on HIV ingly with people with HIV or AIDS (PHAs) to help indi-
and Rehabilitation (2011) has worked diligently for several years viduals manage their illness and daily lives.
to develop content for rehabilitation professionals to increase  Occupational therapists are able to contribute to the deliv-
their abilities to provide high-quality interventions to PHAs. ery of self-management interventions for PHAs by focusing
Ongoing research needs to continue to focus on the out- on person, occupation, and environment interactions.
comes of self-management interventions, including comparison  Occupational therapists can play a role in establishing client-
of modes of delivery, such as in person versus technology based, centred outcomes and measures that focus on achievement of
group versus individual interventions, and programs delivered to activity and social participation goals in the delivery and
people with a variety of chronic health conditions versus those evaluation of self-management interventions with PHAs.
delivered specifically to PHAs. Future research also needs to
explore the impact of literacy on the effectiveness of interven-
tions. In addition, more attention needs to be paid to activity and
Acknowledgements
participation outcomes that are meaningful to PHAs. Occupa-
tional therapists have particular expertise in addressing and mea- We wish to thank Dawn James, Tara Carnochan, and Tania Wiebe of
suring client-centred activity and participation outcomes and can Nine Circles Community Health Centre in Winnipeg, Manitoba, for
make important contributions to the field in this area. sharing their expertise during the consultation process. We would also
like to thank Hal Loewen, Librarian, for his assistance with identifying
relevant research studies. This scoping review was completed as part
Study Limitations of an independent study project during the final year of the occupa-
tional therapy program for Kaitlyn Bernardin, Dorothea Toews, and
There are several limitations to this scoping review. First,
Lynn Vuongphan. Dr. Gayle Restall was their Independent Study
although we did an extensive search of six key databases, it
Advisor for the project.

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Canadian Journal of Occupational Therapy 80(5) 325

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*Miles, M. S., Holditch-Davis, D., Eron, J., Black, B. P., Pedersen, C., E. (2012). ‘‘þCLICK’’: Pilot of a web-based training program to
& Harris, D. A. (2003). An HIV self-care symptom management enhance ART adherence among HIV-positive youth. AIDS Care,
intervention for African American mothers. Nursing Research, 24, 310–318. doi:10.1080/09540121.2011.608788
52, 350–360. doi:10.1097/00006199-200311000-00002 *Sibinga, E. M. S., Stewart, M., Magyari, T., Welsh, C. K., Hut-
O’Brien, K. K., Bayoumi, A. M., Strike, C., Young, N. L., & ton, N., & Ellen, J. M. (2008). Mindfulness-based stress reduc-
Davis, A. M. (2008). Exploring disability from the perspective tion for HIV-infected youth: A pilot study. Explore: The

Canadian Journal of Occupational Therapy


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Canadian Journal of Occupational Therapy 80(5) 327

Journal of Science and Healing, 4, 36–37. doi:10.1016/j. *Webel, A. R. (2010). Testing a peer-based symptom management
explore.2007.10.002 intervention for women living with HIV/AIDS. AIDS Care, 22,
*Smith, S. R., Rublein, J. C., Marcus, C., Brock, T. P., & Chesney, M. 1029–1040. doi:10.1080/09540120903214389
A. (2003). A medication self-management program to improve *Webel, A. R., & Holzemer, W. L. (2009). Positive self-management
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Otto, M. W., & Safren, S. A. (2008). CBT for medication adherence
and depression (CBT-AD) in HIV-infected patients receiving Author Biographies
methadone maintenance therapy. Cognitive and Behavioral Prac-
tice, 15, 93–106. doi:10.1016/j.cbpra.2006.11.004 Kaitlyn N. Bernardin, MOT, is Occupational Therapist,
Steultjens, E., Dekker, J., Bouter, L., Schaardenburg, D., Kuyk, M., & Alberta Health Services, South Health Campus, 4448 Front
Van den Ende, E. (2004). Occupational therapy for rheumatoid Street SE, Calgary, AB, Canada, T3M 1M4. At the time of
arthritis. Cochrane Database of Systematic Reviews, 2004(1), Arti- this study, Kaitlyn was a master’s student in the occupational
cle CD003114. doi:10.1002/14651858.CD003114.pub2 therapy program at the University of Manitoba.
Stewart, K. E., Cianfrini, L. R., & Walker, J. F. (2005). Stress, social
support and housing are related to health status among HIV- Dorothea N. Toews, MOT, is Service Coordinator, Forensic
positive persons in the deep south of the United States. AIDS Care, Assertive Community Treatment (FACT) Program, 2-817 Ban-
17, 350–358. doi:10.1080/09540120412331299780 natyne Avenue, Winnipeg, MB, Canada, R3E 0Y1. At the time
Swendeman, D., Ingram, B. L., & Rotheram-Borus, M. (2009). Com- of this study, Dorothea was a master’s student in the occupa-
mon elements in self-management of HIV and other chronic ill- tional therapy program at the University of Manitoba.
nesses: An integrative framework. AIDS Care, 21, 1321–1334.
doi:10.1080/09540120902803158 Gayle J. Restall, PhD, OT Reg. (MB), is Associate Professor,
Tran, T., Thomas, S., Cameron, D., & Bone, G. (2007). Rehabilitation Department of Occupational Therapy, University of Manitoba,
in the context of HIV: Implications for occupational therapists. R106-771 McDermot Avenue, Winnipeg, MB, Canada, R3E 0T6.
Occupational Therapy Now, 9(2), 3–6.
*Wantland, D. J., Holzemer, W. L., Moezzi, S., Willard, S. S., Arudo, Lynn Vuongphan, MOT, is Occupational Therapist,
J., Kirksey, K. M., . . . Huang, E. (2008). A randomized controlled Cornerstone Therapy, 200 Bradbrooke Drive, Yorkton, SK,
trial testing the efficacy of an HIV/AIDS symptom management Canada, S3N 2K5. At the time of this study, Lynn was a
manual. Journal of Pain and Symptom Management, 36, 235– master’s student in the occupational therapy program at the
246. doi:10.1016/j.jpainsymman.2007.10.011 University of Manitoba.

Book Review
LeVeau, Barry F. (2011). ample use of photos and diagrams to further clarify each bio-
Biomechanics of Human Motion: Basics and Beyond for the Health mechanical principle.
Professionals. Thorofare, NJ: Slack. Each chapter includes a series of corresponding activities
183 pp. $43.95. ISBN: 978-1-55642-905-7 that primarily involve defining or explaining key concepts and
solving biomechanical problems. Answers are provided. An
DOI: 10.1177/0008417413511061
extensive list of suggested readings is provided at the end of
each chapter. Readings are clinically focused and offer the
Biomechanics of Human Motion offers an introduction to the reader an opportunity to explore each concept in greater depth.
basic principles of biomechanics. The text is fundamentally The text is considered introductory and is intended for a
about force and its application to the human body. The book broad audience of health professionals. Many examples are
consists of seven chapters, with each chapter focusing on a bio- pertinent to occupational therapy, specifically in relation to
mechanical principle, including force, strength of materials, seating, orthotics, and ambulation. However, the text largely
composition and resolution of forces, equilibrium, friction, and focuses on exercises, and there are few actual examples of
dynamics. The final chapter offers a series of examples to high- forces related to complex occupations, making the direct
light the application of biomechanical analysis to a range of application to occupational therapy interventions more
clinical situations, such as body mechanics, exercise, and gait. difficult.
Definitions are provided for each concept, and mathemat- This would be a good resource textbook for students
ical formulas are included throughout the text to offer the entering occupational therapy or for occupational therapists
reader a deeper understanding of the relationships among who would like a better understanding of the biomechanical
concepts and variables. The formulas are clearly introduced principles that inform their practice.
and directly linked to clinical examples. The author makes
Catherine Donnelly

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Reproduced with permission of the copyright owner. Further reproduction prohibited without
permission.