Living long-term with HIV/AIDS: exploring impact in psychosocial and vocational domains

In the last decade, new treatments for the Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) have led to improved health and longer life expectancies for many HIV-positive individuals. Coping with HIV/AIDS as a chronic, rather than terminal illness presents new challenges for those living with the disease and for service providers. This review of HIV/AIDS-related literature attempts to address the major medical, psychological and psychosocial challenges related to living long-term with HIV/AIDS and consider how they may present obstacles to attainment of educational and vocational goals for HIV-positive individuals. Implications for service providers and suggestions for future research are discussed. An exploratory study of needs assessment is proposed.     

HIV/AIDS and work: The implications for occupational therapy

Improvements in preventive and rehabilitative care have transformed many cases of Human Immunodeficiency Virus (HIV) from being an absolute fatal disease to a chronic, expensive illness. As survival rates and life expectancy increase for people with HIV/AIDS, work plays a more central role in improving their quality of life [5]. Persons with HIV/AIDS face numerous physical challenges in maintaining employment. Signs and symptoms of HIV infection and related opportunistic infections include fatigue, muscle weakness, neuropathy and decreased sensation, bowel and bladder incontinence, persistent cough, weight loss, decreased range of motion and coordination, limited endurance, cardiac problems and vision loss. Occupational therapy practitioners must identify the unique impact they can make on a client's quality of life by addressing work-related issues faced by the HIV/AIDS population.     

Human immunodeficiency virus (HIV) seropositive homeless men: Behavioral and social characteristics

Homeless persons living in U.S. innercities are at risk for human immunodeficiency virus (HIV) infection, but few studies have examined the continued risk behaviors of HIV infected homeless men. We investigated the sexual behavior of 32 homeless men who had tested HIV seropositive. Twenty-five percent of HIV positive men reported a history of injection drug use, 34% had sex with men, over 40% had participated in commercial sex, and 59% had been treated for a non-HIV sexually transmitted disease. HIV seropositive men also reported recent sexual behavior, with 62% having sex in the previous month and 50% currently sexually active. Condom use was inconsistent among seropositive men; 44% of vaginal and 50% of anal intercourse occasions in the preceding three months did not involve condoms, and 28% of HIV seropositive men did not use a condom during their most recent sexual encounter. Substance use was frequently associated with unprotected sexual behavior among HIV seropositive men. Finally, measures of life satisfaction showed that HIV seropositive men were most satisfied with their relationships, mental health, and spiritual well being. These data suggest a need for intensive behavioral interventions tailored for homeless HIV infected men and we recommend that existing substance use treatment and holistic care be incorporated into behavioral interventions for HIV infected men.     

Redefining Sex and Intimacy: The Sexual Self-Images,Outlooks, and Relationships of Gay Men Living with HIV/AIDS

This paper examines how gay men living with HIV disease come to terms with the profound sexual implications of their illness. Based on interviews with 25 gay men diagnosed with HIV/AIDS, this paper highlights (a) the disruptions that these men experience in their sexual feelings and self-images as a result of their illness; (b) the challenges they encounter in negotiating and sustaining sexual relationships; (c) the declines they experience in their sexual attractiveness, desire, and capacities as their illness advances; and (d) the changed meanings they give to sex and self as they come to terms with the erotic implications of their illness and try to preserve valued, intimate identities. In focusing on these themes, this paper offers an “insider's view” into key dimensions of the moral experience of gay men with HIV/AIDS. It also illustrates how the moral experience of these men shifts over the course of their illness, especially in response to the changes and challenges that arise in their intimate relationships and subcultural networks. On a broader, analytic level, this paper addresses a research question that has been neglected in previous studies of the experience of illness—that is, how does serious illness affect the sexuality of diagnosed individuals, particularly their construction of sexual and intimate identities? Through examining this question, this paper contributes to and extends the growing interactionist literature on the consequences of illness for self.     

Pediatric Chronic Illness Management: A Qualitative Dyadic Analysis of Adolescent Patient and Parent Illness Narratives

In pediatric chronic illness, little is known about the relational interactions between adolescent patients, parents, and illnesses and how they influence self-management of illness. We conducted interviews with 32 individuals (16 dyads) representing adolescents diagnosed with a chronic illness and their primary parent who had been referred to a psychosocial treatment program for challenges with illness management. Interviews were conducted individually and analyzed dyadically using grounded theory to better understand the relational processes that may be contributing to illness management difficulties. Results include a theory of patient–parent illness responses and how parental illness meanings play a role in adolescent self-management. Results can be used to better understand and treat family relational patterns that may be influencing pediatric illness management challenges.     

Positive employment service - facilitating employment for people living with HIV

As treatments and therapies develop and improve, enhancing life expectancy, Human Immunodeficiency Virus (HIV) has been described by some as a long term chronic condition rather than an acute life threatening illness. As this change occurs, new issues become relevant for the person living with HIV, employment being one of these. In light of this, the Positive Employment Service was developed and implemented to explore and address some of the issues related to employment for people living with HIV. The original concept for the service was primarily focused on vocational rehabilitation; however, it soon became clear that there was a need for a prevocational service facilitating transition and adjustment to productivity roles. The service was developed using approaches from Vocational and Occupational Therapy Models of Practice. This article discusses the challenges of developing and implementing this service and explores the unique perspective that occupational therapy brings to a position of this kind.     

Human Immunodeficiency Virus (HIV) Seropositive Homeless Men: Behavioral and Social Characteristics

Homeless persons living in US. innercities are at risk for human immunodeficiency virus (HW) infection, but few studies have examined the continued risk behaviors of HIV infected homeless men. We investigated the sexual behavior of 32 homeless men who had tested HIV seropositive. Twenty-five percent of HW positive men reported a history of injection drug use, 34% had sex with men, over 40% had participated in commercial sex, and 59% had been treated for a non-HIV sexually transmitted disease. HIV seropositive men also reported recent sexual behavior, with 62% having sex in the previous month and 50% currently sexually active. Condom use was inconsistent among seropositive men; 44% of vaginal and 50% of anal intercourse occasions in the preceding three months did not involve condoms, and 28% of HW seropositive men did not use a condom during their most recent sexual encounter. Substance use was frequently associated with unprotected sexual behavior among HW seropositive men. Finally, measures of life satisfaction showed that HIV seropositive men were most satisfied with their relationships, mental health, and spiritual well being. These data suggest a need for intensive behavioral.interventions tailored for homeless HW infected men and we recommend that existing substance use treatment and holistic care be incorporated into behavioral interventions for HW infected men.     

A Self-Psychological Perspective on Chronic Illness

It is becoming increasingly common to encounter patients seeking psychotherapy for symptoms resulting from chronic illness. Regardless of the specific diagnosis, chronic illness is a phenomenon with deep implications for disruption of self-states and narcissistic injuries. Working with chronically ill patients presents many challenges to the patient and the therapist, ranging from acute grief and loss to a reworking of unresolved developmental issues. This paper explores the use of a self-psychological perspective in the treatment of chronic and terminal illness. Approaching treatment from a self-psychological perspective, psychoanalytic psychotherapy can be successfully utilized in conjunction with supportive therapy.     

Disability and Chronic Illness Identity: Interviews with Lesbians and Bisexual Women and Their Partners

Disability rights activists and cultural workers are articulating disability identity and culture. Through interviews with lesbians and bisexual women with disabilities or chronic illnesses and their partners, the present study examined disability/chronic illness identity on the level of individual, couple, and community. Participants shared differing perspectives about how disability/chronic illness identity relates to other aspects of identity, and about whether disability/chronic illness identity is fluid or constant. They described several challenges they have encountered in developing disability/chronic illness identity. Couples talked about developing boundaries and balance in their relationships, and about how disability or chronic illness has strengthened their relationships. A number of participants spoke about identity as intimately linked with community. Implications for community building are discussed.     

HIV/AIDS: Measuring an Evolving Virus

Many social work journal articles portray HIV as a chronic illness. Although HIV medical management has evolved, it is far from chronic for most of the world. With such rapid developments in the field of HIV/AIDS, this article examines validity of knowledge measurements developed pre-HAART. Further, what place does validity hold in the maintenance of these measurement devices? The authors review several widely used measurement scales utilized in developed nations—The Beliefs About Preventing AIDS, The HIV Knowledge Questionnaire, and The International IADS Questionnaire-English Version—to answer these questions and to promote understanding for social workers in the field of HIV/AIDS regarding validity of the instruments.     

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.     

Chapter 12. Families Caring for Persons with HIV/AIDS

SUMMARY

The extent to which family members are willing and able to assist with daily activities and provide emotional support can greatly affect the quality of life for persons with chronic illness. In the case of HIV/AIDS, the burdens of symptom management and medication are amplified by social stigma. This chapter provides a summary of the physical, psychological, social, and spiritual issues associated with HIV/AIDS along with approaches to assessment and treatment.     

Demands of Maternal Chronic Illness and Children’s Educational Functioning: An Exploratory Study

The study explored the associations between characteristics (e.g., type of illness, years of illness, time spent on managing illness related activities, and the extent of physical impairment) of maternal chronic illness, household income, demands of illness experienced by the patients and their families, and their children’s academic achievement. One hundred and fifty mothers who were diagnosed with chronic physical illness (e.g., diabetes, cancer, multiple sclerosis, HIV/AIDS, etc.) participated in this study by completing a questionnaire asking their medical condition, experienced demands imposed by their illness, as well as their children’s grades in school. The results indicated that years of illness, extent of physical impairment, time spent on managing illness related activities, and household income were significantly associated with the demands imposed by the mothers’ physical illness. Household income was found to be the most robust predictor of children’s grades in the sample of chronically ill mothers. Implications and limitations of the present study will be discussed.     

Anatomy of Fear: Mead's Theory of the Past and the Experience of the HIV/AIDS “Worried Well”

The HIV/AIDS “worried well”—persons who believe themselves infected with HIV in the absence of any objective medical proof—have been well documented in the psychological literature but not the sociological literature. Adopting a symbolic interactionist perspective, I use George Herbert Mead's theory of the past to conceptualize the HIV/AIDS worried well experience by analyzing narratives written by persons who have been worried well. Empirically, I provide sociological evidence of the existence of the HIV/AIDS worried well. Theoretically, I expand concepts derived from studies of persons with chronic illness to the worried well and speak to the influence of Mead's theory of the past to sociology.     

The dimensionality of stigma: a comparison of its impact on the self of persons with HIV/AIDS and cancer

Does the impact of stigma on the self differ by illness type? This study focuses on a comparison of the effects of the stigma associated with HIV/AIDS and cancer on self-esteem, body image, and personal control. We test the hypothesis that individuals' perceptions of stigma account for significant differences in the impact of an illness on the self. We examine four dimensions of perceived stigma: social rejection, internalized shame, social isolation, and financial insecurity. In turn, we consider how these dimensions medicate the effects of HIV/AIDS and cancer. Our sample includes 130 persons with HIV/AIDS and 76 persons with cancer. We control for illness severity by including a measure of functional health status that is based on participants' subjective perspectives of the severity of their symptomatology. Our findings provide additional support for modified labeling theory; however, our findings also point to the dimensionality of stigma and its differential negative impact on particular elements of the self, regardless of illness type.     

Care Coordination of Services for People Living with HIV: A Case Study of a Rural Clinic

Abstract

The healthcare landscape is changing with the development of integrated health care models across the country. Counseling is uniquely positioned to add to the continuum of services of integrated health by providing counseling and case management services through advocacy for clients. One particular chronic illness that remains highly stigmatized is HIV, which is slowly becoming more integrated into the larger healthcare system. This pilot study documents the process and experience of a hospital-based midwestern AIDS service organization in the development of innovative and unique services to address the needs of the HIV population in a rural midwestern state.     

Impairments and perceived competence in persons living with HIV/AIDS

Medical advances have transformed HIV/AIDS from a short-term terminal illness to a long-term chronic condition. Consequently, the disability experience of persons with HIV illness has shifted from issues related to physical well-being to those concerning performance of daily life activities and wider community participation. These changes have necessitated rehabilitation interventions for persons with HIV/AIDS to focus on issues related to enabling participation in all spheres of everyday activities. However, limited information is available on the impairments prevalent in the emergent population of people living with HIV/AIDS and on the impact of these impairments on the person's functional performance and participation in various occupations of daily living. The present study attempted to explore these issues as they are experienced by the emergent population of people living with HIV/AIDS. The purpose of the study was: (1) to explore occupational functioning across various activities, (2) to describe the various impairments prevalent in this population, and (3) to examine the impact of these impairments on the person's perceived occupational competence. Two instruments, the Sign and symptom checklist for persons with HIV disease and the Occupational Self-Assessment were administered to a sample of 35 individuals (Mean age=42.8 yrs.) living in supportive living facilities. Impairments most commonly identified by the participants included: fatigue; fear/worries; difficulty concentrating; muscle aches; and depression. The two primary areas of occupational functioning where participants reported experiencing moderate to severe difficulty included: managing finances and physically engaging in activities which were reported by 67.7% and 35.5% of the participants respectively. No statistically significant correlation was observed between various measures of impairments and the overall measure of perceived occupational competence for the sample of individuals living with HIV/AIDS included in this study.     

Grass Roots Promotion of Community Health and Human Rights for People with Disabilities in Post-communist Central Europe: a profile of the Slovak Republic

Individuals living with a disability or chronic illness in post-communist Central and Eastern Europe face significant challenges to quality of life. The government-supported health care infrastructures in the post-communist countries of Central and Eastern Europe remain highly centralised and institutional, which poses particular obstacles to people with disabilities who wish to live independently in their communities. A partial solution to this difficulty has been the development of innovative grass roots organisations that provide community-based support to individuals with disabilities or chronic illness. These disability organisations provide services and advocacy that allow individuals to receive needed support outside of the biomedical institutions, facilitating independent living in the community. They do so, however, in a political and economic environment of immense change, and one with varying degrees of support for non-governmental organisa tions and a Civil Society. The following article profiles this grass roots development in one particularly interesting post-communist Central European country, the Slovak Republic.     

Pediatrics: The emerging psychosocial challenges of the AIDS epidemic

HIV has a pervasive and profound effect on the psychological, social and neuropsychological functioning of infected infants, children and their families. This article discusses direct and indirect psychological manifestations of HIV in children. Direct effects are the outcome of the virus acting on the central nervous system and can result in compromised cognitive, language, motor, socio-emotional and motivational functioning. Indirect effects involve psychological responses to the stress of living with a life threatening illness, the social ostracism, disruption in life goals and undergoing frequent invasive and protracted medical procedures. A major focus of this article is to outline and describe a model comprehensive psychosocial support system developed within the Pediatric Branch of the National Cancer Institute. This includes early intervention issues and strategies for working with families during the introductory phase of the treatment program that also provides the framework for a care management approach, salient mental health problems that frequently occur in this group, and appropriate interventions for individuals and families. Attention is also given to dealing with anticipatory loss and bereavement, implementing traditional innovative intervention techniques, and for providing advocacy services concerning possible legal, financial, housing, and educational issues.     

Helping HIV-positive persons to negotiate the disclosure process to partners, family members, and friends

For people who have been diagnosed with a chronic illness, one inevitable issue to be addressed is whether and how to share this information with others. For persons who are HIV positive, disclosure presents an especially arduous task. The purpose of this article is to offer a strategy to assist marriage and family therapists in facilitating client disclosure of an HIV-positive status to partners, family members, and friends. In addition, suggestions for setting the stage for disclosure to occur and recommendations for client follow-up are proposed.