Article

Self-management interventions for people living with human immunodeficiency virus: A scoping review

Canadian Journal of Occupational Therapy 80(5) 314-327 DOI: 10.1177/0008417413512792

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E´tude de la porte´e des interventions axe´es 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 cle´s : autogestion; ergothe´rapie; 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. Selfmanagement interventions are a promising approach for occupational therapists to enable PHAs’ occupational performance goals. Abre´ge´ Description. L’autogestion est une nouvelle intervention importante pour les personnes atteintes du virus de l’immunode´ficience humaine (VIH). Les principes de l’autogestion sont conformes aux principes de l’ergothe´rapie centre´e sur le client. But. Cette e´tude de la porte´e abordait trois questions relatives aux interventions axe´es sur l’autogestion pour les personnes atteintes du VIH : (a) Quelles sont les connaissances, habilete´s et attitudes enseigne´es? (b) Quels sont les re´sultats escompte´s? (c) Quelles sont les expe´riences de participation des personnes atteintes du VIH? Me´thodologie. Ces questions ont fait l’objet d’une recherche dans six bases de donne´es. Deux chercheurs ont analyse´ de manie`re inde´pendante les re´sume´s et les articles afin de de´terminer s’ils devaient ou non eˆtre retenus pour l’e´tude. Les donne´es extraites ont e´te´ regroupe´es par the`me, de manie`re ite´rative. Re´sultats. Trente-cinq articles ont e´te´ retenus. Les interventions enseignaient les soins personnels, des habilete´s interpersonnelles, des connaissances techniques, des habilete´s cognitives, des attitudes positives, la planification pour l’avenir et la gestion des roˆles. Les re´sultats e´taient notamment la gestion du bien-eˆtre, de la sante´ et de la maladie et l’utilisation des services de sante´. Les expe´riences de participation te´moignaient des expe´riences sociales, des besoins des personnes atteintes du VIH, des besoins spe´cifiques des femmes, de la participation, de la remise du pouvoir, de l’importance de l’intervention et des expe´riences ve´cues face a` la prestation des services. Conse´quences. Les interventions axe´es sur l’autogestion sont une approche prometteuse que les ergothe´rapeutes peuvent utiliser pour favoriser l’atteinte des objectifs en matie`re 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: [email protected].

Canadian Journal of Occupational Therapy 80(5)

H

uman immunodeficiency virus (HIV) compromises the immune system and makes an individual vulnerable to opportunistic infections (McConnell, 2007). The current medication regime for HIV consists of antiretroviral therapy, which involves a combination of medications (Department of Health and Human Services, 2013). These medications have extended life expectancy for people with HIV or acquired immunodeficiency syndrome (AIDS) (PHAs; Palella et al., 1998). O’Brien and colleagues developed the Episodic Disability Framework (O’Brien, Bayoumi, Strike, Young, & Davis, 2008) to describe the highly individual disability experiences of PHAs, which can be characterized by unpredictable fluctuations between periods of health and symptom exacerbation. PHAs have needs in the areas of physical function, psychological coping and well-being, cognition, and social participation (Anandan, Braveman, Kielhofner, & Forsyth, 2006; Crystal, Fleishman, Hays, Shaprio, & Bozzette, 2000). Although occupational therapists have provided effective interventions to address the needs of other populations with chronic episodic health conditions, such as arthritis (Steultjens et al., 2004), there are few published reports of occupational therapy interventions with 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 health providers and clients to meet clients’ perceived needs in dealing with emotions, managing roles and health conditions, and increasing clients’ confidence in managing their condition (Lorig, 1996). These concepts are congruent with the clientcentred practice of occupational therapy (Law, Baptiste, & Mills, 1995) suggesting that the incorporation of selfmanagement in occupational therapy interventions may offer important opportunities for therapists to enable PHAs to achieve their occupational performance goals. Over the past few decades, self-management interventions have been used successfully with people with a variety of chronic conditions. For example, the Chronic Disease Self-Management Program has been shown to effectively address physical, psychological, and social issues (Lorig et al., 1999). The knowledge and skills taught in self-management interventions are designed to empower persons living with chronic conditions to improve their health and regain control of their lives (Gifford & Sengupta, 1999; Swendeman, Ingram, & Rotheram-Borus, 2009). Consistent with social cognitive theory, self-management interventions aim to improve health outcomes by increasing self-efficacy, which is a sense of one’s ability to accomplish a desired task (Bandura, 1977; Lorig, 1996). A variety of group-based and one-on-one self-management approaches have been implemented with PHAs (Gifford & Sengupta, 1999; Swendeman et al., 2009). Topics relevant to include in self-management interventions for PHAs may be both similar to and different from other chronic conditions. Many needs of PHAs stem from treatment side effects, disease symptoms, and social issues, all of which impact quality of life

315 (Johnson & Folkman, 2004; Tran, Thomas, Cameron, & Bone, 2007). This paper builds on Swendeman et al.’s (2009) review of self-management interventions for chronic conditions, which examined HIV-specific concerns in relation to selfmanagement needs and programs designed to address a variety of chronic diseases simultaneously. We built on this previous review by including more recent literature on the topic, focusing specifically on self-management programs for PHAs as well as PHAs’ experiences with self-management programs. The purpose of our scoping review was to identify the scope, range, and type of self-management interventions with PHAs that are being reported in the literature and the implications of that literature for occupational therapy. The objectives were to identify (a) the knowledge, skills, and attitudes being taught to PHAs in self-management interventions; (b) the intended outcomes of self-management interventions for PHAs; and (c) PHAs’ experiences with self-management interventions. For this review, self-management was considered to be any strategy taught to encourage individuals to manage their disease, including structured interventions and general selfmanagement strategies, such as sleep hygiene or exercise.

Method A scoping review examines the literature on a specific topic, identifying and summarizing relevant themes (Arksey & O’Malley, 2005; Plow, Finlayson, & Rezac, 2011). It also identifies gaps in the existing literature and provides recommendations for future research (Arksey & O’Malley, 2005). This scoping review followed the six-step approach described by Arksey and O’Malley (2005) and Levac, Colquhoun, and O’Brien (2010).

Step 1: Identifying the Research Question We identified three questions regarding PHA self-management interventions: (a) What knowledge, skills, and attitudes are being taught in self-management interventions for PHAs? (b) What are the intended outcomes of self-management interventions for PHAs? (c) What are PHAs’ experiences participating in self-management interventions? These questions were chosen to cover important information about program content, intended outcomes, and processes to explore the implications for occupational therapy practice, education, and research.

Step 2: Identifying Relevant Studies Each of the three research questions was searched separately on the following databases: CINAHL, PubMed, Scopus, Embase, Cochrane, and OTSeeker. All databases were searched from 1996 to December 6, 2012. Searches were limited to articles published after 1996 to capture literature that was published after the availability of antiretroviral therapy in North America. Search terms used for all three questions included self-management, disease management, self-care, Revue canadienne d’ergothe´rapie

316 HIV, human immunodeficiency virus, acquired immune deficiency syndrome, and acquired immunodeficiency syndrome. In addition, for the first question, search terms included knowledge, skills*, attitude*, and behavio*. Search terms for the second question included outcome* and effective*. Finally, search terms for the third question included experience, perception*, perceive*, qualitat*, and feel*. Reference lists of articles relevant to the three questions were also reviewed to identify additional articles.

Step 3: Study Selection Titles and abstracts of all resulting articles were reviewed independently by two researchers to eliminate studies irrelevant to the research questions and duplicates. Consensus was reached through discussion by the research team. To be included in the scoping review, articles had to be written in English, focus primarily on HIV, and be consistent with the previously established definition for self-management. Exclusion criteria were having a focus on evaluating specific drug regimens, case management, HIV prevention, or management of co-occurring conditions, such as Hepatitis C. After exclusion based on titles and abstracts, two researchers independently reviewed each full article before confirming inclusion in the scoping review. From the 63 articles reviewed in full, 35 articles were identified that fit within the researchers’ previously established inclusion and exclusion criteria. Various study designs were included, such as randomized controlled trials (RCTs), pre-post studies, one case series, and qualitative studies. Descriptive articles were also included because they provided an in-depth summary of intervention content. Literature reviews and single case studies were excluded.

Bernardin et al. narrative form to represent the data with more depth and clarity. The results are reported in the Findings section below.

Step 6: Consultation Building on the scoping review methodology of Arksey and O’Malley (2005), Levac et al. (2010) emphasized that consultation with clinicians is essential. Consultation allows for disseminating 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 research team developed a preliminary report of the review findings, which was presented to three service providers at a local nonprofit HIV treatment and prevention centre. Service providers in this organization were involved in the initial identification of the project topic and were considered collaborators in the process. Thus, the consultation was part of an integrated knowledge translation process. After presenting a written report of the findings to service providers, the research team used guiding questions to facilitate a discussion with the consultation group. Topics discussed during the consultation meeting included the use of adjunct programming to address the diverse needs of PHAs, benefits of various modes of service delivery, outcome measures used to evaluate self-management interventions, and trends that were seen in a clinical setting that were not reflected by the literature findings. The consultation process, including presentation of findings and subsequent discussion, lasted approximately an hour and a half and provided additional perspectives on the practical application of the review findings.

Findings Step 4: Charting the Data Data from the 35 included articles were extracted into a matrix chart with headings related to the study design (purpose, method, sample characteristics, and type of study) as well as 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). Data were extracted from each article by one researcher and then reviewed by a second researcher and either modified or confirmed. Researchers reviewed information related to each of the three research questions from the data collection matrix and identified key categories after the first detailed review of full articles. The team iteratively modified descriptions of each category during data collection and analysis until reaching agreement on the comprehensiveness and inclusiveness of the categories.

Step 5: Collating, Summarizing, and Reporting Results The research team organized data within each category related to the three study questions. For the first two questions, the data were organized into tables. Due to the qualitative nature of the data related to participants’ experiences, these data were reported in Canadian Journal of Occupational Therapy

Table 1 summarizes the 35 articles included in the review and the knowledge, skills, attitudes, and intended outcomes addressed in the interventions. The detailed results from the literature are organized around the three research questions.

Knowledge, Skills, and Attitudes Taught in Self-Management Interventions for PHAs The research team reviewed knowledge, skills, and attitudes identified in the literature (see Table 1) and developed several categories and subcategories based on topics identified most frequently in the literature. Consensus was reached among all members of the research team. The specific knowledge, skills, and attitudes were grouped into seven main 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.

Intended Outcomes of Self-Management Interventions for PHAs Researchers reviewed the intended outcomes identified in the literature (see Table 1) and, through consensus, developed three

Evaluate effectiveness of symptom management program

Examine creation of a selfmanagement program

Coˆte, Godin, Garcia, Gagnon, & Rouleau (2008)

Evaluate effectiveness of symptom management program

Chiou et al. (2004)

Chiou et al. (2006)

Evaluate acceptability of Adolescent Impact intervention for two unique participant groups

Chandwani, Abramowitz, Koenig, Barnes, & D’Angelo (2011)

Goal setting and monitoring, selfadvocacy, communication, medication management, stress management, symptom management, nutrition, workplace issues

Knowledge, skills, and attitudes taught

Descriptive None Canada

Improve PHAs’ quality of life, drug adherence, and CD4þ count

Improve PHAs’ self-monitoring and selfcare of HAART side effects

Increase HIV knowledge, disease management, and risk reduction skills and motivate healthy lifestyles

(continued)

Improve medication adherence, symptom Self-efficacy skills, medication managemanagement, social relationships and ment, symptom management, coping strategies, positive relationships and posi- communication skills tive attitudes

N ¼ 67 (same sample as above) Education about HAART medication, Taipei medication management, symptom management

Education about HAART medication, medication management, symptom management

N ¼ 67 94% male Taipei

RCT

RCT

General HIV knowledge, motivation, medication management, stress management, safe sex practices, communication with health care providers, disclosure issues

N ¼ 166 All adolescents, 53% female; 94% African or Hispanic; 59.6% perinatally infected, 40.4% behaviourally infected with HIV United States

RCT

Improve medication adherence, HIV knowledge, self-empowerment, and CD4 levels; reduce viral load and avoid hospitalization

Improve self-management skills, work transition, and employment

Intended outcomes

Improve perception of self and disease, Stress management, medication self-management, medication adherence, management, symptom management, sleep hygiene, nutrition, complementary and social support therapies, grief, HIV disclosure, cognitive restructuring, social relationships, reproductive issues, housing, employment

N ¼ 187 100% female, 62% White United States

Medication management, self-esteem/selfN ¼ 29* confidence, social support, 31% female, 69% male; 22 information about HAART Hispanic, 6 African American, 1 White *Findings reported only on focus group with 15 people United States

N ¼ 53 53% female, 47% male; 4% working part-time; 64% Black and 19% Hispanic United States

Sample size, characteristics, and context

Pre-post

Qualitative

Evaluate medication adherence intervention

Bontempi, Burleson, & Lopez (2004)

Bova, Burwick, & Evaluate Positive Life Skills Quinones (2008) workshop for women

Pre-post

Type of study

Evaluate pilot selfmanagement and work transition intervention

Purpose

Bedell (2008)

Authors

Table 1 Summary of Reviewed HIV Self-Management Articles

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Describe framework for development of PSMP

Gifford & Groessl (2002)

Canadian Journal of Occupational Therapy Increase self-efficacy and improve social networks/supports

Complementary therapies for symptom management, HIV treatment, nutrition, self-care, stress management, sex and reproduction, healthy lifestyles

Tai chi and aerobic exercises

Unknown sample Combination of educational program series and 1-day social events Mainly African American women United States N ¼ 38 100% male; 61% White, 29% Black, and 10% Hispanic United States

Computer system including questions and Improve quality of life and decrease use of health care services answers, instant library, information on support, risk reduction, decision making, discussion groups, and expert consultation Sleep hygiene Improve sleep quality and duration

N ¼ 204 90% male United States

RCT Examine effectiveness of Comprehensive Health Enhancement Support System

Improve mood, coping, and perceptions Information about HIV, cognitive skills, N ¼ 40 10% female; 30 White, 5 Asian, coping skills, psychoeducation, community of health resources, relaxation techniques 5 Hawaiian United States

Inouye, Flannelly, Evaluate individual selfmanagement training & Flannelly (2001)

RCT

N ¼ 30 100% female United States

Hudson, Portillo, Examine effectiveness of sleep Pre-post & Lee (2008) promotion intervention

Gustafson et al. (1999)

Improve quality of life and psychological Coping skills, stress management, selfregulatory behaviours, health behaviours, coping, minimize HIV transmission risk, increase access to health services, and problem solving, goal setting achieve positive life meaning

N ¼ 943 21% female United States

RCT

Evaluate reductions in transmission behaviours following Health Living Project

Gore-Felton et al. (2005)

Same as above (Gifford & Groessl, 2002) Increase confidence, HIV knowledge, and collaboration with health care providers

N ¼ 71 Same sample as above

Qualitative

Evaluate PSMP

Gifford & Sengupta (1999)

Same as above (Gifford & Groessl, 2002) Improve motivation, confidence, symptom status, self-efficacy, and health behaviours

RCT

Gifford, Laurent, Evaluate PSMP Gonzales, Chesney, & Lorig (1998)

N ¼ 71 100% gay men; 88% White United States

Improve self-care skills, healthy behaInformation about HIV, symptom viours/lifestyle, motivation, confidence management, medication management, stress management, self-care, sex, disclosure, cognitive skills, self-efficacy, interpersonal skills

Improve psychological and functional outcomes; improve strength, flexibility, balance, and endurance

Intended outcomes

Knowledge, skills, and attitudes taught

Sample size, characteristics, and context

Descriptive None United States

RCT

Examine quality of life of PHAs in exercise programs

Galantino et al. (2005)

Type of study

Examine series of educational Qualitative programs for women

Purpose

DeMarco, & Johnsen (2003)

Authors

Table 1 (continued)

318 Bernardin et al.

Descriptive No sample Examine secondary prevention program needs of youth living with HIV and describe planned intervention

Lightfoot, RotheramBorus, & Tevendale (2007)

Describes development and Pre-post initial evaluation of cognitivebehavioural intervention

Safren et al. (2004)

Pre-post

RCT

Determine effectiveness of HeartMath stress reduction program

Determine efficacy of selfcare symptom management intervention

Qualitative Describe program development and experiences of participants in psychoeducation program

Pre-post

Rozman, Whitaker, Beckman, & Jones (1996)

Miles et al. (2003)

Mason & Vazquez (2007)

Evaluate usability and Markham, Shegog, Leonard, feasibility of þCLICK webbased application Bui, & Paul (2009)

Qualitative

Cognitive behavioural psychoeducation and behaviour training

Information on HIV and medication, cognitive behavioural skills, sense of optimism

N ¼ 24 87.5% male United States N¼5 100% male; 3 White, 2 African American United States

Information on HIV and medication, N ¼ 109 100% African American mothers problem solving, importance of regular health care visits United States

Parenting skills, self-care, goal setting

N ¼ 13 86% female; 95% African American United States

(continued)

Improve medication adherence and reduce viral load

Improve psychological well-being and reduce physical symptomatology

Reduce emotional distress and improve perceptions of health

Increase knowledge of family impacts of HIV, access to resources and social support

Individually tailored information through Increase abstinence, disclosure, condom web-based application, including informa- use, and birth control tion on condom use and abstinence

Reduce substance use and risky sexual behaviours, improve quality of life

N ¼ 32 62.5% female; 68.8% Black; all HIVþ youths United States

Information on HIV and medication, risk reduction, symptom management, goal setting, communication skills, cognitive behavioural skills

Improve self-efficacy, empowerment, health status, and behaviours; reduce health service utilization

Evaluate impact of PSMP on African asylum seekers

Kennedy & Rogers (2009)

Qualitative

Relaxation, diet, exercise, symptom management, communication skills, disclosure, sexual behaviour, information on HIV and medications, goal setting

Improve self-efficacy, empowerment, selfProblem solving, medication logs, relaxation, diet, exercise, positive self-talk, management behaviours, mental health, and physical health communication skills

N ¼ 14 Local gay men and African refugees United Kingdom

Explore participants’ experiences of PSMP

Kennedy, Rogers, & Crossley (2007) N ¼ 29 Limited sample information available; majority gay White men from the United Kingdom or African asylum seekers United Kingdom

Goal setting, coping skills, problem solving, Improve treatment adherence social support skills, communication skills

N ¼ 249 90% male United States

Evaluate effectiveness of one- RCT on-one side effects coping intervention

Johnson, Dilworth, Taylor, & Neilands (2011)

Improve quality of life, coping, and maternal role adaptation

Stress management, health education, alternative therapies, communication

Pre-post

N ¼ 94 100% female Thailand

Evaluate empowerment program for HIV-infected mothers

Jirapaet (2000)

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Canadian Journal of Occupational Therapy

Examine feasibility and acceptability of mindfulnessbased stress reduction program

Sibinga et al. (2008)

Improve medication adherence

Relaxation skills N¼5 All youth; 80% female; all African American United States N ¼ 43 91% male; 74% non-White United States

Qualitative

Evaluate peer-based intervention symptom management

Improve mood and medication adherence

Information about HIV and medication, symptom management, cognitive skills, positive attitudes, communication skills Information about HIV, symptom management, medication management, stress management, self-care, safer sex, disclosure, cognitive skills, self-efficacy, interpersonal skills

N¼7 100% female; 87% African American United States

Improve symptom management and selfcare

Improve quality of life and medication adherence, reduce HIV-related symptom intensity

Increase self-efficacy Knowledge about HIV and symptom management, complementary therapies, self-care strategies, positive attitudes, selfefficacy

N ¼ 89 100% female United States

N ¼ 768 38.5% female United States, Puerto Rico, South Africa

Cognitive behavioural skills, communication skills, medication adherence, positive attitudes

Improve medication adherence

Note. CD4 ¼ cluster of differentiation 4; HAART ¼ highly active antiretroviral therapy; PSMP ¼ Positive Self-Management Program; RCT ¼ randomized controlled trial.

Qualitative

RCT

Evaluate efficacy of symptom RCT management manual

Case series N ¼ 4 Demonstrate feasibility of 75% female cognitive behavioural therapy for medication adherence and United States depression

Webel & Evaluate PSMP in a female Holzemer (2009) sample

Webel (2010)

Wantland et al. (2008)

Soroudi et al. (2008)

Medication adherence strategies, goal setting

Identify acceptability, importance, and feasibility of program

Information on HIV and medication, medication adherence, increased motivation

N ¼ 10 All youth; 80% female; 8 Black United States

Pre-post

Determine whether one-on- RCT Smith, Rublein, Marcus, Brock, & one self-management interChesney (2003) vention improved medication adherence

Evaluate usability and effectiveness of þCLICK web-based application

Shegog, Markham, Leonard, Bui, & Paul (2012)

Identify client experiences of addressing advanced care planning in intervention

Exercise, nutrition, sleep hygiene, advanced care planning, relaxation skills, medication adherence, communication skills, self-efficacy

N ¼ 43 (only 12 had HIV) Sex distribution not available United Kingdom

Improve medication adherence

Intended outcomes

Qualitative

Knowledge, skills, and attitudes taught Information about medication, problem solving, communication skills, enhanced motivation

Sample size, characteristics, and context N ¼ 56 87.5% male United States

Type of study

RCT Examine and compare cognitive behavioural and selfmanagement intervention

Purpose

Sanders, Rogers, Examine impact of incorporating advanced care Gately, & Kennedy (2008) planning into selfmanagement intervention

Safren et al. (2001)

Authors

Table 1 (continued)

320 Bernardin et al.

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Table 2 Knowledge, Skills, and Attitudes Taught in Self-Management Interventions

Table 3 Intended Outcomes of Self-management Interventions

Category

Category

Knowledge, skills, and attitudes

Self-care

Stress management Medication management Symptom management Sleep hygiene Nutrition Substance use Exercise Interpersonal Communication skills Relationships Safer sex practices Disclosure Social supports Technical knowledge Information about HIV disease and symptoms HAART medication and side effects Complementary therapies HIV reinfection risk Interpretation of HIV lab tests Participating in clinical trials Cognitive skills Goal setting and monitoring Problem solving Decision making Cognitive restructuring Identifying resources and supports Relaxation Coping skills Positive attitudes Self-efficacy Positivity and optimism Future orientation Importance of health care visit Planning for the future Advanced care planning Roles Parenting Employment Note. HAART ¼ highly active antiretroviral therapy.

categories based on outcomes identified most frequently. The three categories were (a) well-being and quality of life, (b) health and illness management, and (c) use of health services. The outcome indicators for each category are listed in Table 3.

Experiences of PHAs Participating in SelfManagement Interventions We identified seven categories related to experiences of PHAs participating in self-management interventions: (a) social experiences, (b) needs of PHAs, (c) needs specific to women with HIV, (d) participation, (e) empowerment, (f) importance of the intervention, and (g) experiences with different modes of service delivery. Social experiences. Social support from other participants as well as program leaders was a very important component of self-management interventions for PHAs (Bontempi, Burleson, & Lopez, 2004; Bova, Burwick, & Quinones, 2008; Galantino et al., 2005; Gifford & Sengupta, 1999; Jirapaet, 2000; Kennedy, Rogers, & Crossley, 2007; Mason &

Intended outcomes

Well-being and quality Physical of life Increase strength, endurance Improve sleep quality Physiological Increase CD4þ counts Decrease viral load Psychological Improve mood, increase positive attitudes Improve self-efficacy Social Increase social supports and networks Improve work transition and employment rates Increase technical knowledge about HIV and Health and illness management antiretroviral medications Increase adherence to medication regimes Increase use of healthy sex practices Improve self-care skills and abilities Improve healthy lifestyles Improve interpersonal skills Decrease substance use Use of health services Decrease frequency of hospital admission Increase access to health services Improve communication with health care providers Note. CD4 ¼ cluster of differentiation 4.

Vazquez, 2007). Group interventions had powerful benefits due to the opportunity for socializing, social support, companionship, forming connections with others in similar situations, and knowledge sharing among participants (Bova et al., 2008; Galantino et al., 2005; Gifford & Sengupta, 1999; Jirapaet, 2000; Kennedy et al., 2007; Mason & Vazquez, 2007). PHAs participating in an intercultural group experienced recognition of the global nature of their problems and decreased social isolation (Kennedy & Rogers, 2009). Social experiences could also be negative. In group interventions, 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 participants dropped out of the group (Bova et al., 2008; Mason & Vazquez, 2007). Health care providers’ stigmatizing attitudes, whether expressed or suspected, were also experienced negatively (Mason & Vazquez, 2007; Smith, Rublein, Marcus, Brock, & Chesney, 2003; Webel & Holzemer, 2009). Needs of PHAs. Although self-management needs of PHAs may be similar to those of people with other chronic conditions, PHAs may also have additional needs, such as access to food, housing, medication reminder devices, and protection for sexually active clients (Bontempi et al., 2004). Tailoring interventions to participants’ cultural context was also identified as important. For example, different cultural understandings of death influenced the interpretation and relevance of advanced care planning information for participants in one study (Sanders, Roger, Revue canadienne d’ergothe´rapie

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Bernardin et al.

Gately, & Kennedy, 2008). Finally, PHAs in one group intervention felt that the content was most relevant to those with little prior access to HIV education and services and that offering beginner and advanced versions of the course might be a helpful structural change (Gifford & Sengupta, 1999).

2008), decreased stress (Jirapaet, 2000), improved physical status and psychological coping (Galantino et al., 2005), and being able to make better choices (Markham et al., 2009). PHAs also identified that goal setting was an important means to change health behaviours (Gifford & Sengupta, 1999).

Needs specific to women with HIV. Women attending a self-management workshop identified multiple needs, including increased services for women over 40 years of age, improved accessibility to services for women who were employed, enhanced psychosocial services, increased services related to Hepatitis C, and programs for the children of women with HIV (Bova et al., 2008). In one mixed-sex intervention, female participants expressed a desire to discuss sexual intimacy issues, which were not addressed in that particular intervention (Kennedy & Rogers, 2009) and may be difficult to address in mixed-sex groups. Incorporating women with HIV as peer leaders may be beneficial, particularly, having peers with longer-term illness supporting women who were recently diagnosed (Webel & Holzemer, 2009), although peer leaders need to be well trained (Webel, 2010).

Service delivery models. Various modes of service delivery have been used to provide self-management interventions to PHAs. These include one-on-one and group-based, face-to-face interventions as well as computer-based interventions (Gustafson et al., 1999; Markham et al., 2009; Shegog, Markham, Leonard, Bui, & Paul, 2012). Literature suggests that PHAs have had positive experiences with computer-based interventions. One computer-based intervention was designed to be accessed by youth through the World Wide Web. Participants using this web-based intervention were highly satisfied, finding it easy to use, relevant, and adaptable to their own pace (Markham et al., 2009; Shegog et al., 2012). The majority of participants in one study liked the intervention, with 70% indicating that they would use it again and recommend it to others (Shegog et al., 2012). Another evaluation of this intervention revealed that PHAs valued accessing sensitive information in a confidential, nonthreatening manner (Markham et al., 2009).

Participation. Participation rates were inconsistent 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, substance abuse, job conflicts, and loss of interest (Gore-Felton et al., 2005; Miles et al., 2003; Rozman, Whitaker, Beckman, & Jones, 1996; Wantland et al., 2008). PHAs have identified a number of barriers that influence their participation, such as external stressors and cultural irrelevance. For example, Kennedy and Rogers (2009) found that some PHAs live with external stressors not addressed in self-management interventions, such as fear of deportation for PHAs who are asylum seekers. As well, some self-management content focuses on Western individualistic values, which is not culturally relevant to all participants (Kennedy & Rogers, 2009). Empowerment. Participation in self-management interventions can empower individuals by enabling them to take more control of their illness, with participants experiencing increased self-confidence and feeling prepared to make better choices (Kennedy et al., 2007; Markham, Shegog, Leonard, Bui, & Paul, 2009). Empowerment can manifest in PHAs having ‘‘feelings of dignity’’ restored (Jirapaet, 2000), taking on more responsibility for their own health and making positive life changes (Gifford & Sengupta, 1999), and having more positive interactions with health care providers (Gustafson et al., 1999). Importance of self-management interventions. Participants found self-management interventions important in contributing to positive changes in their lives. Changes included improved ability to obtain or maintain employment (Bedell, 2008), feeling understood (Sibinga et al., 2008), improved perception of sleep (Hudson, Portillo, & Lee, Canadian Journal of Occupational Therapy

Discussion Diverse Needs, Diverse Approaches This scoping review identified important content of selfmanagement interventions for PHAs. This content needs to be considered in the context of the highly diverse and unique needs of PHAs. The content of self-management interventions, and the ways in which they are delivered, need to take into account the demographic diversity of PHAs as well as diversity in their needs, goals, and aspirations. This review highlighted several important areas for consideration as occupational therapists and others continue to develop and implement selfmanagement interventions for PHAs. First, medication adherence is one of the most consistent components of self-management interventions. All but one of the reviewed articles included education about HAART (highly active antiretroviral therapy) regimens, side effects, or medication management skills, with 12 studies specifically identifying improved adherence as an intended outcome. Partial adherence can lead to resistance to the drugs used to treat HIV, which has become an important justification for medication adherence (Chiou et al., 2004; Cote, Godin, Garcia, Gagnon, & Rouleau, 2008; Safren et al., 2001). In addition, medication adherence is also being conceptualized, not only as treatment but also as a means of preventing spread of the disease (McNairy, Cohen, & El-Sadr, 2013). However, some PHAs choose not to take their medications due to the impact of side effects on quality of life (Holzemer et al., 1999; Johnson & Folkman, 2004). It is unclear whether the focus on medication adherence in self-management interventions fully addresses the complexities of medication

Canadian Journal of Occupational Therapy 80(5) adherence in the context of the daily lives of PHAs. Increased attention can be placed on understanding how adherence can affect participation in occupations such as employment (Bernell & Shinogle, 2005). Second, self-management interventions need to be flexible in content to meet a broad range of needs. Current HIV selfmanagement interventions often do not address important concerns in cognition, psychological coping and well-being, social participation, and physical function. In the single study where participants selected their own discussion topics, the allfemale participants discussed domestic violence, reproductive decisions, managing loss and grief, housing options, journaling, pediatric HIV, and legal issues (Bova et al., 2008). These topics are not frequently identified in the literature as content areas for HIV self-management interventions. Some issues, such as reproductive decision making, are relevant primarily to women living with HIV and may be difficult to address in mixed-sex interventions, highlighting the need for women-only interventions (Bova et al., 2008; DeMarco & Johnsen, 2003; Kenney & Rogers, 2009). Other issues identified in the women-only study by Bova et al. (2008), such as housing, are relevant to people of all genders. Homelessness, unstable housing, and poverty have been identified as important social issues for PHAs (Stewart, Cianfrini, & Walker, 2005), but these issues were not addressed in structured interventions reported in the literature. The difficulty of addressing complex social needs, such as housing and poverty, in a self-management context was highlighted by our consultation group. They emphasized the importance of ensuring that these issues are addressed and that the best option may be through adjunct programming at HIV clinics or community health centres. However, the importance of meeting these basic needs in the context of self-management highlights the importance of holistic and integrated approaches to support and services for PHAs. Lower education levels and health literacy are common in persons with disabilities, including PHAs (Canadian Public Health Association, 2008; Rusch et al., 2004). Adjunct programming that addresses literacy education, with a focus on health literacy, may be relevant in an HIV-care context. Although health literacy is a common issue, only one reviewed study focused on low health literacy by clarifying and simplifying medication information (Bontempi et al., 2004). Given the diverse needs of PHAs, a number of different service models are used to deliver HIV self-management interventions. Each delivery mode may be useful in encouraging the participation of PHAs for different reasons. For example, valuable aspects of group-based interventions include social support and being able to learn from other group members (Bova et al., 2008; Chandwani et al., 2011; Galantino et al., 2005; Gifford & Sengupta, 1999; Jirapaet, 2000; Kennedy et al., 2007; Mason & Vazquez, 2007). Also, some interventions are standardized to require a group format, which allows for efficient use of health care resources. Self-management groups are often led by peer facilitators. However, since HIV tends to affect marginalized populations disproportionately, extra effort may be needed to recruit and train

323 peers as leaders. Recent research is exploring the possibility of thorough training regimens for nonprofessional leaders (Cully et al., 2012; Roth et al., 2012). Another option may be to offer a combination of professional and peer leadership, which offers the advantages of both highly trained leadership and peer mentorship. Although group interventions have advantages for PHAs, one-on-one interventions may be important as well. One-toone service delivery supports the development of a therapeutic relationship between PHAs and health care professionals. Many PHAs value support received from health care providers in self-management interventions (Bontempi et al., 2004). Oneto-one service delivery may be especially important when working with newly diagnosed PHAs, when establishing trust, or in HIV clinics where ongoing care will be provided beyond the self-management intervention. Technology-based self-management interventions, such as interactive educational computer software, are increasingly common and, because they do not require direct support from professionals, may be implemented in a wide variety of settings. Benefits of this method of service delivery include confidentiality and self-directed learning pace (Markham et al., 2009; Shegog et al., 2012). However, technology-based interventions may be inaccessible to PHAs from marginalized groups, who may be unfamiliar with, or not have access to, different forms of technology.

Outcomes of Self-Management Interventions In relation to outcomes, measures of viral load and CD4þ (cluster of differentiation 4) counts are often used as measures of success of self-management for PHAs. However, our consultation group of HIV care practitioners, who reviewed and discussed the findings of this review, indicated that these physiological indicators may not be the most appropriate outcome measures. CD4þ counts and viral loads may fluctuate unexpectedly due to the episodic nature of HIV. PHAs may show improvements in medication adherence, symptom and stress management, communication skills, and participation in social roles without showing physiological improvements (Safren et al., 2004; Smith et al., 2003). One area to consider that would increase the scope of outcomes measured is quality of life (QOL). QOL is a complex concept and has been defined within different studies on the basis of the specific evaluation tool used to measure it (Chiou et al., 2006; Galantino et al., 2005). Clients from different cultures may have different understandings of QOL (O’Connell & Skevington, 2012), so it may be important to include outcome measures designed for use across diverse cultures. In addition, the PHA population disproportionately includes groups with low literacy. Fifteen of the reviewed HIV self-management studies had participants with one or more of the following literacy-influencing characteristics: did not complete high school, English as an additional language, adolescent, or new immigrant. Outcome measures need to be appropriate for low-literacy and culturally diverse populations. Although diverse outcomes, such as interpersonal skills, decision making, and problem solving, are included in most HIV Revue canadienne d’ergothe´rapie

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self-management studies, only two of the reviewed interventions focused their skill teaching and outcomes specifically on enabling participation in roles such as employment (Bedell, 2008) and parenting (Jirapaet, 2000). There is a need for more studies related to the impact of HIV self-management interventions on engagement in valued activities and life role participation. Self-management interventions generally place on an individual the responsibility to create positive change in their own life. Current self-management interventions do not appear to address environmental factors, such as social stigma or the accessibility of resources for PHAs, which may impact the achievement of desired outcomes.

is very likely that searching a wider variety of databases or the grey literature may have resulted in the inclusion of additional literature. Second, our definition of self-management was limited by the search terms self-care, self-management, and disease management. Including a greater number of search terms to represent the concept of self-management may have identified additional interventions, such as smoking cessation. However, we chose to use a few broad search terms rather than focus on a specific theoretical framework to capture the widest variety of self-management interventions possible. Finally, we excluded articles focused on co-occurring disorders or written in languages other than English.

Implications for Occupational Therapy Practice, Research, and Education

Conclusion

This scoping review identified numerous knowledge, skills, and attitudes currently being taught in self-management interventions, outcomes being addressed, and PHAs’ experiences of participation. Occupational therapists can bring a focus on enabling occupations (Polatajko et al., 2007) to self-management with PHAs. For example, occupational therapists can implement client-centred self-management interventions that focus on the needs and goals of the participants, providing flexibility and diversity as required. The client-centredness element includes consideration of the literacy and health literacy needs of the groups with whom they work. Occupational therapists have a strong grounding in theoretical perspective of the personenvironment-occupation interaction (Law et al., 1996) and can bring that perspective to self-management interventions so that 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 and services, educational programs need to include content related to this population. The Canadian Working Group on HIV and Rehabilitation (2011) has worked diligently for several years to develop content for rehabilitation professionals to increase their abilities to provide high-quality interventions to PHAs. Ongoing research needs to continue to focus on the outcomes of self-management interventions, including comparison of modes of delivery, such as in person versus technology based, group versus individual interventions, and programs delivered to people with a variety of chronic health conditions versus those delivered specifically to PHAs. Future research also needs to explore the impact of literacy on the effectiveness of interventions. In addition, more attention needs to be paid to activity and participation outcomes that are meaningful to PHAs. Occupational therapists have particular expertise in addressing and measuring client-centred activity and participation outcomes and can make important contributions to the field in this area.

Study Limitations There are several limitations to this scoping review. First, although we did an extensive search of six key databases, it Canadian Journal of Occupational Therapy

This scoping review explored the current literature on selfmanagement interventions for PHAs. This literature identified the knowledge, skills, and attitudes being taught, intended outcomes, and PHAs’ experiences of participating in selfmanagement interventions. The literature continues to be sparse in relation to program effectiveness when using different modes of delivery. Increased attention to activity and social participation outcomes is also warranted. Occupational therapists have important contributions to make in delivering selfmanagement interventions through attention to the interaction between the person living with HIV, their existing and desired occupations, and their environments. Occupational therapists can also take leading roles in establishing and using more client-centred outcomes and measures.

Key Messages  Self-management interventions are being utilized increasingly with people with HIV or AIDS (PHAs) to help individuals manage their illness and daily lives.  Occupational therapists are able to contribute to the delivery of self-management interventions for PHAs by focusing on person, occupation, and environment interactions.  Occupational therapists can play a role in establishing clientcentred outcomes and measures that focus on achievement of activity and social participation goals in the delivery and evaluation of self-management interventions with PHAs.

Acknowledgements We wish to thank Dawn James, Tara Carnochan, and Tania Wiebe of Nine Circles Community Health Centre in Winnipeg, Manitoba, for 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 of an independent study project during the final year of the occupational therapy program for Kaitlyn Bernardin, Dorothea Toews, and Lynn Vuongphan. Dr. Gayle Restall was their Independent Study Advisor for the project.

Canadian Journal of Occupational Therapy 80(5)

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Author Biographies Kaitlyn N. Bernardin, MOT, is Occupational Therapist, Alberta Health Services, South Health Campus, 4448 Front Street SE, Calgary, AB, Canada, T3M 1M4. At the time of this study, Kaitlyn was a master’s student in the occupational therapy program at the University of Manitoba. Dorothea N. Toews, MOT, is Service Coordinator, Forensic Assertive Community Treatment (FACT) Program, 2-817 Bannatyne Avenue, Winnipeg, MB, Canada, R3E 0Y1. At the time of this study, Dorothea was a master’s student in the occupational therapy program at the University of Manitoba. Gayle J. Restall, PhD, OT Reg. (MB), is Associate Professor, Department of Occupational Therapy, University of Manitoba, R106-771 McDermot Avenue, Winnipeg, MB, Canada, R3E 0T6. Lynn Vuongphan, MOT, is Occupational Therapist, Cornerstone Therapy, 200 Bradbrooke Drive, Yorkton, SK, Canada, S3N 2K5. At the time of this study, Lynn was a master’s student in the occupational therapy program at the University of Manitoba.

Book Review LeVeau, Barry F. (2011). Biomechanics of Human Motion: Basics and Beyond for the Health Professionals. Thorofare, NJ: Slack. 183 pp. $43.95. ISBN: 978-1-55642-905-7 DOI: 10.1177/0008417413511061

Biomechanics of Human Motion offers an introduction to the basic principles of biomechanics. The text is fundamentally about force and its application to the human body. The book consists of seven chapters, with each chapter focusing on a biomechanical principle, including force, strength of materials, composition and resolution of forces, equilibrium, friction, and dynamics. The final chapter offers a series of examples to highlight the application of biomechanical analysis to a range of clinical situations, such as body mechanics, exercise, and gait. Definitions are provided for each concept, and mathematical formulas are included throughout the text to offer the reader a deeper understanding of the relationships among concepts and variables. The formulas are clearly introduced and directly linked to clinical examples. The author makes

ample use of photos and diagrams to further clarify each biomechanical principle. Each chapter includes a series of corresponding activities that primarily involve defining or explaining key concepts and solving biomechanical problems. Answers are provided. An extensive list of suggested readings is provided at the end of each chapter. Readings are clinically focused and offer the reader an opportunity to explore each concept in greater depth. The text is considered introductory and is intended for a broad audience of health professionals. Many examples are pertinent to occupational therapy, specifically in relation to seating, orthotics, and ambulation. However, the text largely focuses on exercises, and there are few actual examples of forces related to complex occupations, making the direct application to occupational therapy interventions more difficult. This would be a good resource textbook for students entering occupational therapy or for occupational therapists who would like a better understanding of the biomechanical principles that inform their practice. Catherine Donnelly Revue canadienne d’ergothe´rapie