Career counseling with persons living with HIV: an ecological approach.

Advances in medical treatment have greatly extended the life span and quality of life of persons living with HIV, with the nature of the disease evolving from causing an early death to chronic, manageable illness. Career counselors will increasingly be called upon to assist persons living with HIV. This article provides an overview of HIV disease and of career-related issues unique to persons living with HIV. Career counseling interventions are discussed from an ecological perspective.

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Career counselors are called on to assist diverse populations in the process of career development, and recent approaches to career counseling have emphasized the importance of providing appropriate services to such populations. Although the needs of persons living with HIV have been examined in the general counseling literature, only one study (Hunt, Jaques, Niles, & Wierzalis, 2003) has addressed the career counseling concerns of persons living with HIV. The purpose of this article is to highlight the unique concerns faced by this population and to provide career counselors a model for conceptualizing and designing career counseling interventions in working with individuals with HIV. We use an ecological perspective (Cook, Heppner, & O'Brien, 2002) to build an understanding of career-related needs of individuals with HIV and to create an organized, intentional approach to addressing such needs. Specifically, this article includes (a) current trends in HIV/AIDS disease, (b) the role of work for persons with HIV, (c) career counseling implications, and (d) a case illustration.

HIV Today

Approximately 900,000 persons in the United States are living with HIV; an additional 40,000 persons become infected with the virus annually (Centers for Disease Control and Prevention [CDC], 2000). HIV is a virus that leads to the destruction of blood cells that normally protect the body from infection; the disease may cause a variety of health problems that lead to a diagnosis of AIDS (CDC, 2001b). Of the 900,000 persons living with HIV in 2001 in the United States, 362, 827 individuals were known to be living with AIDS (CDC, 2001a). Because of the severity of symptoms most often associated with AIDS, this discussion focuses on career counseling approaches for persons with an HIV diagnosis.

Persons living with HIV represent a diverse proportion of the American population, but new HIV infections have occurred disproportionately according to gender (70% men) and race (54% Black; CDC, 2000). African Americans are 10 times more likely than Whites to contract HIV, with incidence rates increasing most rapidly among African American women and other women of color (CDC, 1999). The CDC identifies the most common risk factors for infection as men having sex with men (42%), heterosexual contact (33%), and injection drug use (25%). HIV most commonly affects young adults, with more than one half of new infections occurring in persons under 25 years of age (CDC, 2000).

Career theorists have identified early adulthood as a key period in career development that influences how an individual functions in other life roles (e.g., Super, 1990). Although HIV most often affects those in the early stages (under 25 years of age) of career development (Fesko, 2001; Hoffman, 1996, 1997), there is a dearth of literature regarding career counseling with persons living with HIV. This lack of information may be due to the reality that earlier an HIV diagnosis meant rapid, progressive disability. For this reason, services for persons living with HIV focused on providing case management services to individuals who were dying from HIV/AIDS (Brooks & Klosinski, 1999; McReynolds, 2001; Salz, 2001; Yallop, 2000). Although such services remain necessary, the shift in HIV/AIDS from fatal disease to long-term, chronic illness has created a need for attention to the process of living with, rather than dying from, the disease.

The course of HIV/AIDS has been drastically changing since the introduction of a class of medications known as protease inhibitors in the mid-1990s. The average length of time from HIV infection to AIDS diagnosis is increasing, and many individuals may live 10 or more years before developing symptoms (CDC, 1998). The ability to effectively treat AIDS-related illnesses is also improving, and AIDS-related deaths have decreased 70% in recent years (National Institute of Allergy and Infectious Diseases, 2002).

Although the management of medications to treat HIV and symptoms previously served as a full-time occupation for many individuals living with HIV (Yallop, 2000), protease inhibitors have allowed a considerable number of them to continue working or to return to the workplace after a period of disability (Bettinger, 1999). Known as the "Lazarus Syndrome," declining mortality rates and improving health have led to a rapid increase in the number of persons living with HIV who are feeling well and considering reentering the workforce (Gant, 2000; Goodman, 1997; Richardson, 1997). Work-related issues for persons living with HIV are sometimes similar to the issues related to other physical and psychological disabilities, but the chronic, unpredictable, and stigmatized nature of HIV disease (McReynolds & Garske, 2001) necessitates special attention to the unique concerns and needs of this population. Many individuals living with HIV are excited and eager to resume employment (Salz, 2001; Yallop, 1999); addressing the unique career-related challenges these individuals face will facilitate this transition.

An Ecological Perspective

Cook et al. (2002) suggested an ecological perspective of career development for working with women from many racial and ethnic backgrounds. This perspective may also be applied when working with persons living with HIV because it provides an excellent structure for understanding and addressing the diverse needs and realities of this population. Individuals who are most often affected by HIV are also among the most culturally diverse, stigmatized, and marginalized in American society (CDC, 2000), and traditional approaches to career counseling operate under assumptions that do not always fit their needs. Cook et al. identified the primary assumptions of traditional career counseling models as

      (a) the separation of work and family roles in people's lives; (b)
      reverence for individualism and autonomy in American life; (c) the
      centrality of work as life activity in people's lives; (d) the
      linear, progressive, and rational nature of the career development
      process; and (e) the structure of opportunity characterizing the
      labor force as a whole. (p. 292)

In contrast, an ecological perspective assists the counselor in conceptualizing and treating clients within the context of multiple, interacting environments, and the approach is flexible enough to accommodate the diversity of needs within this population. Career counselors who use this perspective work with clients to understand and address larger, environmental factors that affect individual career development. In addition, an "ecological perspective reminds counselors that person-environment interactions can be changed in numerous ways for any given client" (Cook et al., 2002, p. 297). Counselors are encouraged to be creative and flexible in implementing a variety of traditional and nontraditional methods to achieve counseling goals.

Betz (2002) cautioned against both assuming the experiences and values of members of a population necessarily diverge from the experiences and values that are considered traditional and applying the model too broadly. Certainly, the career counselor will need to consider the unique circumstances, environmental influences, and individual goals of any client with whom she or he works.

The Role of Work for Persons Living With HIV

Career and work are commonly understood to provide a source of purpose and meaning in life for individuals in American culture. M. S. Richardson (1993) delineated between work as productive citizenship and work as achievement-oriented career and wrote, "work has long been understood to be a central and critical feature of human functioning" (p. 428) because it connects the individual to the larger society. Despite evidence that career planning is associated with more positive coping and lower levels of emotional distress in youths living with HIV (Lightfoot & Healy, 2001), many studies that have examined the daily lives of persons living with HIV provide only a brief examination of the role of work. Although this omission is likely due to the initial experience of HIV/AIDS as a rapidly debilitating disease, career counselors must understand the unique role that work plays for persons living with HIV today.

Brooks and Klosinski (1999) identified three salient issues that influence the desire to return to work among individuals living with HIV: (a) psychological and emotional benefits, (b) the social nature of work, and (c) financial benefits. Psychological and emotional benefits emerged as a central motivating force in the desire to return to work among persons living with HIV. Specific benefits include feeling better about oneself (Brooks & Klosinski, 1999; Fesko, 2001; Salz, 2001); sense of independence (Salz, 2001); and fulfillment of personal needs such as well-being, dignity, meaning, and sense of accomplishment (Bettinger, 1999; Brooks & Klosinski, 1999; Hoffman, 1996; Timmons & Jesko, 1997). Work is also associated with providing an individual with a positive sense of identity as a contributing member of society (Hoffman, 1996; McReynolds, 2001; Salz, 2001; Timmons & Jesko, 1997) rather than as patient (Barroso, 1999) or victim (Yallop, 2000).

For persons living with HIV in one study,

      work served as a measure that all is not lost, that the person
      living with HIV disease or AIDS is still a part of the human race,
      has not given in to a terrible disease, and is continuing the
      fight for survival. (McReynolds, 2001, p. 112)

Other individuals attributed their survival to viewing HIV as a manageable illness, maintaining balance in their lives, and living in the present (Bedell, 1999). Additional psychological-survival functions of employment included active participation in daily living (Salz, 2001), distraction from the disease (McReynolds, 2001), and hope for the future (Bedell, 1999; McReynolds, 2001).

The second salient theme is the social nature of work. Persons living with HIV often view employment as providing social support and feelings of interpersonal connectedness (Hoffman, 1996; Timmons & Jesko, 1997), socialization (Salz, 2001), and stress relief (O'Brien, 1992). For others, work is a primary source of social contact and contributes to decreased feelings of isolation (Hoffman, 1996).

Although financial aspects of employment have been identified as a primary theme related to the desire to return to work among persons living with HIV (Brooks & Klosinski, 1999; McReynolds, 2001), some experts (e.g., Bedell, 1999; Brooks & Klosinski, 1999) have suggested that financial aspects of employment play a relatively small role in the transition. This contradiction may be related to financial disincentives such as withdrawal of benefits (e.g., housing, health care, or child care) related to the return to work for persons living HIV. When working within an ecological perspective, counselors may need to address financial motivators and obstacles to assist clients in maximizing the psychological, emotional, and social benefits that are so closely related to work.

In a recent qualitative study, Hunt et al. (2003) conducted a series of interviews with individuals living with HIV regarding their career development concerns. The three primary themes that emerged from the interviews--workplace issues, medical issues, and coping resources--closely relate to the types of ecological factors that often inhibit persons with HIV from benefiting from work. For example, participants in Hunt et al.'s study often discussed changing life plans, social support, disclosure issues, and need for workplace accommodation. By integrating knowledge regarding the benefits of work with the career concerns of individuals living with HIV, career counselors can implement specific interventions that address the career-related obstacles faced by this population.

Career Counseling Implications

An ecological perspective, wherein counseling interventions modify person-environment interactions, provides a lens for understanding the unique career development issues facing persons living with HIV. The following implications for career counseling practice are based on suggestions by Cook et al. (2002); however, they have been slightly adapted to illustrate how such interventions may be used in career counseling with this specific population.

Clarifying and Affirming Life Options

Career counselors can assist persons living with HIV in identifying and clarifying values that influence career and life-planning decisions. This process may include recognition and discussion of the societal messages received regarding acceptable roles and behavior (Cook et al., 2002) as well as consideration of how the client incorporates his or her personal values in this context. The experience of being ill with HIV is likely to have a large impact on the priorities and values of individuals living with HIV (Fesko, 2001; Yallop, 1999). Changes may include new perspectives regarding the role of career, a greater sense of what is important (Bettinger, 1999), and a new definition of meaningful work (Gant, 2000).

Traditional career counseling approaches are generally future oriented; however, many individuals with HIV become acutely aware of the importance of living in the present (Bettinger, 1999; Hoffman, 1996). The career counselor can help the client seek balance between two seemingly contradictory values of living in the present and planning for an unknown future. Specifically, Hoffman (1996) suggested that counselors might assist clients in working toward this balance by facilitating a life review to both honor past experiences and identify goals for the future.

Upon further exploration, the client may question whether a return to the workplace is congruent with his or her personal values. The client's opportunity to weight alternatives and outcomes is crucial in the process of making an informed decision (Bettinger, 1999; Larson, 1999b; Yallop, 1999). The career counselor might work with persons living with HIV to affirm the right of the individual to make decisions that differ from traditional expectations. The focus of career counseling may then include empowering the client to find ways to incorporate values and life options while facing resistance or disapproval.

Managing Multiple Roles

Persons living with HIV are likely to be juggling a multitude of roles, including partner, caregiver, parent, patient, worker, and citizen. Often they have spent a considerable amount of time in the role of patient (Yallop, 2000). Although this role is likely to have changed in recent years, the individual's ability to maintain complex medication regimens (Yallop, 1999) and to regularly attend medical appointments will still be vital. In addition, persons living with HIV may struggle to garner the support of significant others who have concerns about the change in lifestyle or potential for negative consequences of a return to the workplace (Bettinger, 1999).

A particular need for creativity exists when counselors work with a person living with HIV, because traditional definitions of career (i.e., career as central, linear, and rational) may be inappropriate for the client's reality. A limitation in the existing literature regarding HIV and work is the frequent failure to consider alternative definitions of work (i.e., other than full-time, paid positions; Hoffman, 1997). Career counselors must work with clients to redefine work (Bedell, 1999) and to identify potential, creative solutions that will fulfill clients' work-related needs while accommodating other needs and life roles. Counselors will best serve clients if they help them to identify additional, flexible possibilities that may include working from home, self-employment, part-time status, and volunteering (Brooks & Klosinski, 1999; Hoffman, 1996).

Persons living with HIV may continually struggle to find and maintain a sense of balance, and it is normal for the client to struggle to incorporate a new schedule when taking on a new role (Bettinger, 1999). Career counselors will need to assist individuals living with HIV in developing ways to ensure maintenance of balance and management of symptoms (Bedell, 1999). Counselors may do so by working with clients to identify and prioritize life roles and helping clients to learn negotiation skills to give voice to their needs (Cook et al., 2002).

Obtaining Needed Resources

Just as the individuals living with HIV are diverse, so are the resources they may need. From an ecological perspective, any person-environment interaction that affects one's ability to enter fully in the career development process may be a focus for intervention. Groomes (1998) identified social, psychological, spiritual, medical, financial, and vocational effects of HIV disability and suggested that these effects varied based on subgroups within this population. The needs of this population are incredibly diverse, and the resources needed stem from the unique life situations of the client. The career counselor, then, must conduct a careful assessment of client needs so that she or he can plan ecological interventions in any of the previously outlined areas accordingly.

Interventions may include linking the client with services that seem to be somewhat unrelated to a traditional career counseling focus. If available, the counselor may link an individual living with HIV to a local AIDS Service Organization for necessary support and services that are identified over the course of counseling. In addition, the counselor can assist a person living with HIV in locating quality child care, transportation, or other practical services that will facilitate continued or resumed employment. Similarly, the career counselor can also facilitate referral to more intensive case management, mental health, or substance abuse services as necessary. When available, interdisciplinary treatment teams can assist in coordinating such comprehensive services.

As discussed previously, individuals living with HIV represent a diverse, stigmatized, and often economically disadvantaged portion of the population. Many persons with HIV are in need of concrete, practical services that will increase the likelihood of successful employment. One must recognize that individuals with limited work histories, high needs, and relatively few skills may struggle to find employment (Hoffman, 1996). In addition, some clients may find that prior legal charges or substance abuse issues may preclude employment in particular sectors (e.g., schools). Furthermore, job search and placement assistance often outweigh exploration issues for unemployed persons living with HIV (Timmons & Jesko, 1997). The career counselor can assist the client in evaluating the degree to which particular plans are congruent with his or her current situation, developing necessary skills, and locating affordable training services. For example, if the counselor becomes aware that the client has limited successful employment history and few job-specific skills, she or he may help the client identify the types of work that seem appropriate, locate funding sources for vocational training, develop interviewing skills, or address gaps in the resume.

Persons living with HIV are likely to be acutely aware of disincentives for returning to work. As discussed previously, withdrawal of benefits is often a factor in work-related decisions (Bedell, 1999; Brooks & Klosinski, 1999). The costs of treating HIV are astronomical, and many individuals living with HIV begin collecting Social Security, disability, and health-related benefits as their health deteriorates. A return to work may render the client ineligible for these vital services, thus increasing the risk that basic needs will not be met (Bettinger, 1999; Larson, 1999a; Timmons & Jesko, 1997). Referrals for legal or financial services will assist clients in examining how the return to work may affect benefits, insurance, and debt management (Larson, 1999b).

Creating Healthy Work Environments

The creation of a healthy work environment may be facilitated by helping clients address internal and external experiences of the return to work. Many persons living with HIV fear the possibility of psychological stress and discrimination related to returning to the workplace (Timmons & Jesko, 1997). Fear, anxiety, and shame influence the ways in which individuals living with HIV experience the work environment (Brooks & Klosinski, 1999). Counselors can assist clients in addressing these factors and building positive coping skills so that potential stress is minimized and the individual emerges empowered and encouraged.

Social issues such as stigma, prejudice, and discrimination are also factors of the work-environment experiences (Brooks & Klosinski, 1999; Fesko, 2001; Hunt et al., 2003; McReynolds & Garske, 2001). The 1990 Americans with Disabilities Act (ADA) requires employers to make "reasonable accommodations" for individuals with known disabilities such as HIV/AIDS (Behling & Guy, 1993). Although ADA was created to protect individuals, questions regarding disclosure of status, confidentiality, and ethics emerge. Unfortunately, a majority of requests for accommodations are denied (Timmons & Jesko, 1997), clients may fear disclosing status to an employer (McReynolds & Garske, 2001), and disclosure of status may be more damaging than lack of accommodation. The risk is especially salient for persons living with HIV when additional factors associated with discrimination such as gender, ethnicity, sexual orientation, and past substance use are present (Fesko, 2001; Goss & Adam-Smith, 1996).

Counselors need to assist clients in recognizing and addressing discrimination and harassment. Examples of discrimination may include isolation from coworkers or public interaction, termination, or reduced responsibilities (Kalichman, 1998). A discussion of concerns regarding these possibilities and the rehearsal of responses to such situations may be integrated into counseling interventions. In addition, counselors may wish to provide information regarding legal resources and consultation for individuals dealing with discrimination in the workplace.

From an ecological perspective, interventions need not be limited to counseling sessions. Counselors may wish to participate, and encourage clients to participate, in larger community efforts to bring about systemic change. For example, counselors may assist with policy and program development, work to reduce stigma and discrimination (Hoffman, 1996), advocate for rights by educating employers (Feist-Price, 1999), or create new programs to better serve this population (Hunt et al., 2003).

Linking Individuals With Role Models and Mentors

Role models assist clients in navigating barriers to career development (Cook et al., 2002) and may serve as sources for support, hope, and connection for persons living with HIV. Roessler, Kirk, and Brown (1997) suggested that individuals with chronic illnesses experience low self-efficacy beliefs and negative outcome expectations regarding a return to work. Relationships with individuals who are successfully navigating similar transitions may serve as powerful motivators and empowerment tools for individuals living with HIV. Where available, participation in related support or process groups may provide such critical supports and role models.

The application of an ecological perspective guides the career counselor in addressing person-environment interactions at work with persons living with HIV. Counselors are encouraged to integrate personal styles, information regarding living with HIV, and the interventions suggested by Cook et al. (2002) to select the counseling tools that will meet the unique needs of each client. In the following section, we illustrate an ecological perspective using a case example.

Case Example

As discussed previously, the needs of persons living with HIV are very diverse, yet clients often present with a number of common concerns. The following case and suggested interventions were constructed based on an amalgamation of our professional interactions with several persons living with HIV. Although selected to reflect current trends in HIV infection, the demographic characteristics of the client presented are fictional.

Angela is a 32-year-old, African American woman who was referred for career counseling by a local AIDS Service Organization. Angela is a single mother of two children and has been living with HIV for 8 years. She worked full-time as a nursing assistant for several years before the severity of her illness forced her to leave the workforce. Angela is receiving benefits that ensure adequate housing and medical care for herself and her children.

During the first session, Angela reports that she is feeling healthy thanks to a new medication regimen and has for some time been contemplating reentering the workforce. She states that she believes this reentry will help her to feel less isolated and more like a productive, worthwhile citizen. Angela also discusses the importance of her children and close relationships with her extended family. Angela says that she found her nursing experience very rewarding, but she is concerned about the long hours, exposure to communicable diseases, and the sometimes rigorous physical work involved. Angela also confides that she worries that people at her new workplace will not accept her because of her illness.

The counselor notes that Angela seems to be struggling to integrate her personal experiences and needs within the context of family and community and decides that an ecological perspective for career development is appropriate. During the initial sessions, the counselor works to clarify and affirm Angela's life options by encouraging discussion of Angela's values along with the messages Angela has received regarding what "should" be important to her. Angela discusses how her experience with HIV has helped her to realize the importance of both her family and of the role of work as a source of personal identity and satisfaction. The counselor affirms Angela's choice to focus on her family as well as on her personal development through work. She encourages the client to take time to consider her options and values in the process of deciding whether to return to the workforce.

The counselor recognizes that Angela is managing multiple roles and works with the client to identify these roles. They construct a map on which Angela illustrates the various roles she plays, the time involved in each role, and the overall importance of each role to her. The counselor affirms Angela for being creative in balancing the needs of her family, being active in the children's school, and simultaneously managing several years of poor health.

The counselor asks Angela to consider how her roles will change if she decides to return to work. Together they construct a second illustration of an ideal balance of life roles, and the counselor encourages Angela to identify concrete means for balancing the roles. Angela focuses on personal stress and time management; the counselor encourages Angela's development of stress management strategies and further suggests that she make use of community and family resources so that she does not become over-whelmed and exhausted with the multitude of responsibilities.

It becomes clear that Angela values working outside of the home, yet she requires flexibility that will accommodate child care issues as well as her medical appointments. The counselor introduces the possibility of part-time or volunteer work that will allow flexible scheduling and participation in the children's activities while also fulfilling the psychological and social needs related to work that first led Angela to career counseling.

Throughout their work together, the counselor works with Angela to identify and obtain needed resources. Specifically, Angela decides that a return to nursing is not a viable option for her at this time. She identifies a need for affordable, flexible training for other career options that will allow her to obtain new skills at a comfortable pace. The counselor addresses this need by introducing Angela to community resources that identify available training; they discuss the use of online and correspondence training programs as a possible way to reduce costs and time involved in training. In addition, the counselor provides Angela with information regarding scholarship programs available for reentry, minority women.

The counselor is aware that a return to work may jeopardize Angela's eligibility for housing assistance and medical benefits. Although the counselor is not familiar with the particulars of case management, she recognizes a need and provides Angela with the name and telephone number of a professional who can advise Angela regarding such matters. The counselor also suggests that Angela schedule a consultation with her physician to discuss the benefits and risks of Angela'a return to work. In the process of voicing her needs, Angela recalls a program for working women offered through the AIDS Service Organization; she decides to attend the next session to see what other services and supports are available.

As Angela comes to a decision about her future career goals, the counselor works with her to envision a healthy work environment. Angela confides that she is fearful of what people will think of her and anxious regarding resuming employment after so many years. The counselor works with Angela to identify her strengths and to use cognitive-oriented coping techniques such as thought stopping and self-affirmation. Specifically, the counselor works with Angela to identify negative thoughts, recognize when she is engaging in such thoughts, and deliberately replace the thought with a more positive, realistic statement about her abilities or worth. The counselor also helps Angela to increase her confidence through developing negotiation and communication skills. Role plays and subsequent processing of Angela's intellectual and emotional reactions are used to assist her in gaining confidence in her ability to handle potential obstacles.

Angela and the counselor openly discuss the benefits and risks of disclosing Angela's HIV status in relation to the ADA legislation that provides for accommodations if a disability is known to the employer. The counselor brings a copy of the applicable legislation to session, and they work together to make sense of the meaning behind the legal terminology. The counselor also provides a list of appropriate books available at the public library that will further inform Angela about the risks and benefits of requesting an accommodation because of a disability. Finally, the counselor provides Angela with a telephone number for the free attorney hotline sponsored through the local Women's Center.

The counselor then works with Angela to identify potential forms of discrimination. They form a written plan for internally coping with and externally addressing harassment and prejudice. The plan includes a listing of personal and professional resources (external) and a list of personal affirmations, stress reduction techniques, and Angela's illustration of her work-related and personal goals (internal). After the conclusion of the seventh session, Angela reports that she is feeling confident regarding her decision to return to work, the resources and supports that are available, her ability to cope with stressors, and her new negotiation skills.

The final sessions focus on Angela's need to maintain balance and wellness in the coming months. Angela and the counselor review specific coping strategies and external resources identified in earlier months. Angela decides that it would be helpful to meet with another woman who is coping with similar issues. The counselor recognizes the potential for additional support and learning and reinforces Angela's initiative by providing a link to a role model or mentor, and they discuss the feasibility of finding a peer support group for persons who are living with HIV. Finally, the counselor recognizes that Angela's career-related needs are likely to shift as she adjusts to the world of work, and they schedule a follow-up session in 2 months to review progress and reassess needs.

Conclusion

Persons living with HIV present a myriad of traditional and nontraditional career counseling issues. As the quality and length of life increase for persons who are living with HIV, the number of HIV-positive individuals in the workforce will continue to grow. Many individuals will consider changes in career or reentry into the workforce after an extended absence. Career counselors must be prepared to meet the unique needs of individuals living with HIV. An ecological approach to career development offers a flexible framework around which to build services and interventions that will benefit them.

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Casey A. Barrio and Marie F. Shoffner, Department of Counseling and Educational Development, University of North Carolina at Greensboro. Marie F. Shoffner is now in the Department of Counseling, University of Virginia. Correspondence concerning this article should be addressed to Casey A. Barrio, 224 Curry Building, University of North Carolina at Greensboro, Greensboro, NC 27402-6170 ([e-mail]).