CHAPTER FIFTEEN

TRAGEDY TO TRIUMPH: LIFE HISTORY OF AN OLDER WOMAN LIVING WITH AIDS

Tracey Couse and Kelly Heard

Approximately, 33% of people now living with HIV/AIDS in the United States are older than 50 years of age (Psaros et al., 2015). Studies have shown that the life expectancy of a person living with HIV is equivalent to that of an individual without HIV, living with another chronic illness (Nakagawa et al., 2012). The Centers for Disease Control (CDC) estimates that 15% of the new cases of HIV and 24% of persons living with HIV are adults who are 50 years and older (CDC, 2008). The majority of HIV studies have been with men, but there are a growing number of women diagnosed with HIV (Psaros et al., 2015). Research has shown that women tend to cope less effectively with a HIV diagnosis and suffer greater disease-related symptoms and mortality (Bianco, Heckman, Sutton, Watakakosol, & Lovejoy, 2011). There are minimal data published on the coping strategies of older women living with HIV (Grodensky et al., 2015; Slomka, Lim, Gripshover, & Daly, 2013). Discovering and understanding effective coping strategies of older women successfully living with HIV may help guide interventions across the life spans of the growing number of women diagnosed with HIV and improve outcomes.

PROBLEM STATEMENT

The purpose of this study is to interpret the self-described life story of an older woman with a diagnosis of HIV in order to understand the psychosocial factors related to successful management of HIV in the long term. Specifically, the research question is: What psychosocial factors encourage success in overcoming the diagnosis of HIV in a woman as she ages? This topic is significant because there is a growing aging population, an increasing number of HIV-diagnosed women, and decreased HIV-related outcomes for women with this diagnosis (Bianco et al., 2011; Psaros et al., 2015). Themes and issues identified here may guide interventions across life span for women aging with HIV or any chronic illness. The challenges of older women living with HIV have not been well separated from those of men (Grodensky et al., 2015). Finally, psychosocial experiences of older women living with HIV have not been fully described (Grodensky et al., 2015).

ASSUMPTIONS

The main assumption, as in any qualitative study is that the person will tell the truth as she sees it. We have no reason to believe she did not.

DEFINITIONS

For the purposes of this study, long term refers to patients who have been diagnosed with HIV for more than 5 years and are now living with the disease past the age of 50 years. Psychosocial is defined as “a term referring to the mind’s ability to, consciously or unconsciously, adjust and relate the body to its social environment” (Gale Encyclopedia of Medicine, 2008). It is in the psychosocial realm that coping exists, which encompasses the spiritual, emotional, and cognitive processes that individuals use to adapt and come to terms with their lives and challenges. Fang et al. (2015) define resilience as involving two components including the exposure to significant adversity and the ability to positively adapt despite the adversity. Finally, successful management of HIV is defined as accepting the diagnosis and performing necessary self-care and health management tasks contributing to long-term survival.

LITERATURE REVIEW

Numerous studies have investigated successful coping mechanisms in older HIV-positive adults living with the disease. One of those themes was optimism. Carrico and Moskowitz (2014) used a cohort study to demonstrate a link between positive affect and engagement in care through increased treatment adherence. Emlet, Tozay, and Raveis (2011) showed optimism as a major coping theme of adults aging with HIV using semi-structured interviews. A thematic review by Roger, Mignone, & Kirkland (2013) found that older adults deal with living with HIV through well-being promotion. Finally, McIntosh and Rosselli (2012) used a meta-analysis and specifically looked at older women living with HIV. They found that positive reframing promoted psychological adaptation for this population studied.

The concept of resilience also repeatedly surfaced in the literature. Dale et al. (2014) found that women living with HIV scoring high in resilience were more likely to adhere to healthy behaviors such as following a healthy diet, exercising, keeping doctors’ appointments, and taking their medications consistently. Even in spite of sexual abuse or multiple abuses, high resilience predicted high Highly Active Antiretroviral Therapy (HAART) medication adherence (Dale et al., 2014). A study by Emlet et al. (2011) found that the majority of subjects older than 50 years had experiences of resilience and strength while living with HIV.

Another recurrent coping theme was social support. Access to social support has been widely studied as part of adherence, increased quality of life, and an important tool for coping with the disease. Webel, Dolansky, Henry, and Salata (2012) studied self-management techniques in women with HIV and found that 21% of their participants believed that attending support groups is an important strategy in self-management. Webel et al. (2013) concluded that improving social capital and incorporating social roles into the daily health activities of women living with HIV may improve their health. Slomka, Lim, Gripshover, and Daley (2013) studied coping in long-term survivors. They found social support to be a basic element of coping and that many participants saw their health care providers as part of their social support network. Cote et al. (2015) found that valuing interpersonal relationships was one of the seven themes to come out of their study on the lived experience of HIV long-term nonprogressors.

The concept of self-efficacy has been studied as a coping strategy. Tyer-Viola et al. (2014) measured self-efficacy using the Adherence Self-Efficacy scale. They were able to determine that adherence, self-efficacy, and depression symptoms predict medication adherence in women. Nokes et al. (2012) also found that self-efficacy was a strong predictor of combined antiretroviral therapy (cART) adherence behavior in their large cross-sectional and descriptive study. Nokes describes how self-efficacy is “an antecedent skill” needed for optimum treatment adherence ultimately assisting this older population with disease coping.

A final recurrent coping theme in the older HIV population was spirituality. Kremer and Ironson (2014) found that spirituality was mainly beneficial for women, heterosexuals, and African Americans. It is a major source of positive coping. Spirituality was described as a source of comfort, empowerment, growth, gratitude, and community support. Kremer and Ironson (2014) found that if clinicians simply asked about spirituality it would help patients cope with trauma. Another study by Molzahn et al. (2012) found three spirituality themes that emerged from their study of people living with serious illnesses. These themes are reflecting on spiritual, religious, and personal beliefs; crafting beliefs for their own lives; and finding meaning and transcending beyond words. Slomka et al. (2013) also noted the prevalence of religion and/or spirituality as a coping mechanism for long-term HIV survivors in their study. Grodensky et al. (2015), who performed semi-structured interviews of women with HIV, who were 50 years and older, found that “spirituality provided great support for all participants.”

After performing this review, the authors have found that the literature has extensively documented HIV-coping and many related aspects, especially for those younger than 50 years of age and for men. However, though there have been studies performed on aging with HIV and the unique challenges people living with HIV (PLWH) face as they grow older, very few have been done on the older population, and even fewer on women aging with HIV. Many factors make this population of older women increasingly susceptible to infection with HIV including physiological changes during menopause, decreased perception of risk, decreased use of condoms, and decreased knowledge of risk (Durvasula, 2014). Although the negative implications of an HIV diagnosis on older women have been noted in the literature (Bianco et al., 2011; Durvasula, 2014; Psaros et al., 2015), effective methods used by patients to overcome this diagnosis have not. Chambers et al. (2014) pointed out that qualitative literature could explore the lived experiences of older PLWH, especially in areas of physical health, antiretroviral therapy (ART) adherence, and sexual health. Chambers also points out that most of the studies so far have been on homosexual or bisexual men. The studies on physical health focus on illness not wellness, and there is a lack of intervention research designed for older PLWH, especially women.

METHODOLOGY

The described study is a focused ethnographic study using a life-history format. The life-history technique is a method commonly used in ethnography that provides understanding of a culture through the eyes of a willing representative who communicates their life story to the researcher (de Chesnay, 2005, 2015). Like all life stories, the one under study is told by the researchers, compiled from data obtained from the informant that is interpreted and translated by the researchers (de Chesnay, 2015). The “culture” under study can be described as the older female population living with HIV in the United States. The purpose and goal of this methodology is to provide an in-depth understanding of the psychosocial factors that encourage success in overcoming the diagnosis of HIV in a woman’s long-term management of her HIV status. The participant was purposively recruited through a contact at a clinical site. Institutional review board (IRB) approval was obtained followed by informed consent. There are three common data collection methods used in life histories including semi-structured interviews, genograms, and timelines (de Chesnay, 2015). The authors used all three methods to construct the participant’s life history. The semi-structured interview guide was developed using guidelines articulated by de Chesnay (2015). Questions were open-ended to minimize the risk of biasing the informant and allow unique themes to emerge. The data were collected over a 90-minute interview to minimize informant burden, and the interview was performed in her home to provide comfort and privacy. The genogram and timeline are not included in this study to protect the identity of the participant. Although the results are not generalizable, the gathered data can be used to obtain a better understanding of this population of women, help to create care interventions for women across the life span living with HIV, and possibly individuals with other chronic illnesses.

RESULTS

The sample for this study is comprised of a single participant. The participant was purposively sampled to participate in the semi-structured interview because of her life story. Inclusion and exclusion criteria do not apply. Means of recruitment was through a contact at a clinical site. The participant is a longtime survivor of HIV infection with progression to AIDS and serves as a clinician in a HIV clinic in the southeast United States. The rationale for choosing the participant included researcher interest and the participant’s unique circumstances as a woman successfully thriving long term with a diagnosis of HIV. Pseudonyms are being used for her and the members of her family to protect their privacy.

The participant, Sue, is a Caucasian female in her late 50s who was born and raised in New York City. She graduated from nursing school in 1978 and became a born-again Christian in 1979. Sue married her first husband, Mark, in 1980. Mark was also a new Christian and had homosexual relations before their marriage. Sue and Mark had their first child, David, in 1982. Sue was very late going into labor with David, causing Mark to confess that he had cheated on Sue and had a homosexual affair in her last trimester. David was born healthy and Sue chose to forgive Mark for his infidelity and they moved on. They then relocated to Atlanta in 1985. Shortly after arriving in Atlanta they had their second son, Luke. Luke became ill at age 15 months with enlarged lymph nodes and was misdiagnosed as having Burkitt’s lymphoma. After being in and out of the hospital for several months, he died at age 20 months in July of 1987. Posthumously, Luke was diagnosed with HIV creating the need for Sue, Mark, and David to be tested. Sue was already pregnant with their third child when she discovered that she and Mark were both positive. David, the eldest son, tested negative. Sue’s daughter and third child, Beth, was born in December of the same year. Beth, who also contracted HIV, became ill with cytomegalovirus (CMV) at around 7 to 8 weeks of age and at this point Sue felt the need for help and support. She and Mark went and confided in their pastor what was happening to them and to Beth. The pastor and the whole church became extremely supportive of Sue and Mark, offering practical help and emotional and spiritual support.

Beth spent most of her life sick and hospitalized, and died by age 17 months in 1989 with AIDS-CMV. When she buried Beth, Sue’s grief was not only that she had lost another child, but that she would never have any more, knowing that the HIV she carried had infected and killed her other two children. Mark’s health began declining in 1990 and by 1995 he had AIDS-dementia and was admitted to hospice. He died secondary to an AIDS-related illness in 1996. In addition to her grief over losing Mark, she also feared being alone for the rest of her life. She never thought she would marry again due to her diagnosis. After Mark was admitted to hospice and after he died, Sue turned her full attention to her own health, losing 75 pounds. Her days revolved around frequent consumption of antiretroviral medications, which had to be taken 1 hour before or 2 hours after eating. Although it was a grueling medication regimen, it assisted with her weight loss. Sue and David changed churches around this time because the pastor of their church had left and the church culture had changed. As always, Sue was very open about her diagnosis and did not hide it from her new group of friends. She met John, her second husband, in that group who was not deterred by her diagnosis. Sue and John were married in 2000, and she acquired five children from that marriage, which helped to fill the vacuum left by losing two of her own. Sue currently works at a local infectious disease clinic and counsels HIV-diagnosed patients. She uses her own story, where appropriate, to help encourage those who are struggling.

The 1.5-hour-long tape-recorded interview of Sue’s HIV journey was carefully transcribed to 16 single-spaced pages. A detailed content analysis was performed. From the transcript, sections were identified for thought processes that were then translated to themes and concepts. This process continued until the authors reached saturation. Five main concepts surfaced from the interview: faith, social support, knowledge, hope/optimism, and resiliency.

The first identified theme is faith. Sue became a Christian in the late 1970s, and she credits her faith for carrying her through all the difficulties.

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