Karolynn Siegel

Perceiving benefits in adversity: stress-related growth in women living with HIV/AIDS

This study examines perceptions of illness-related positive of change or stress-related growth among a sample of African American, Puerto Rican, and non-Hispanic White women (n = 54) living with HIV/AIDS in New York City, USA. While these women acknowledged the negative stresses of living with HIV/AIDS, 83% reported at least one positive change in their lives that they attributed to their illness experience. A number of different domains of potential growth were identified including: health behaviors, spirituality, interpersonal relationships, view of the self, value of life, and career goals. While growth was reported by nearly all the women, some variation was found in the forms of growth reported in relation to the womens ethnic/racial background, class, and IV drug use history. These data suggest an expanded conceptualization of stress-related growth that includes behavioral aspects of growth in response to stress and illness, and which takes into account the diverse ways in which growth may be experienced.

Caregiver burden and unmet patient needs

Four‐hundred eighty‐three patients with cancer and their informal caregivers were studied. Patients reported on met and unmet needs in personal care activities (bathing and dressing), instrumental activities (heavy and light housekeeping, cooking, shopping), transportation (medical and general), and home health care (health/treatment assistance). A minority (18.9%) experienced an unmet need. Hierarchical logistic regression was used to identify significant predictors of any unmet need. Patients were more likely to report any unmet needs when their illness/treatment resulted in restricted activity days, when their financial resources were reduced enough for them to apply for Medicaid or Public Assistance, or when their caregivers were not their spouses. Although in general, the likelihood of an unmet need decreased as the number of domains of assistance provided by the caregiver increased, if that care was associated with a high level of burden, the odds of a patient reporting an unmet need actually increased.

The Perceived Benefits of Religious and Spiritual Coping Among Older Adults Living with HIV/AIDS

Although religious and spiritual beliefs and practices have been frequently associated with greater psychological well-being among illness populations, little is known about the specific benefits individuals perceive they receive from these beliefs and practices. This issue was examined in interviews with 63 older HIV-infected adults. Participants reported a variety of benefits from their religious and spiritual beliefs and practices, including: (1) evokes comforting emotions and feelings; (2) offers strength, empowerment, and control; (3) eases the emotional burden of the illness; (4) offers social support and a sense of belonging; (5) offers spiritual support through a personal relationship with God; (6) facilitates meaning and acceptance of the illness; (7) helps preserve health; (8) relieves the fear and uncertainty of death; (9) facilitates self-acceptance and reduces self-blame. These perceived benefits suggest potential mechanisms by which religion/spirituality may affect psychological adjustment.

Psychosocial Adjustment of Children with a Terminally Ill Parent

Although a substantial number of children experience serious parental illness and death, the adjustment problems attendant to the stress of having a fatally ill parent have not been examined systematically. This paper compares the psychosocial adjustment of 62 school-aged children with a terminally ill parent (study sample) with that of children in a community sample, using several standard rating scales. Study children had significantly higher levels of self-reported depression (Childrens Depression Inventory) and anxiety (State-Trait Anxiety Inventory) and lower self-esteem (Self-Esteem Inventory). Parents also reported study childrens significantly higher behavior problems and lower social competence (Child Behavior Checklist). Increased professional attention to this vulnerable population is encouraged.

AIDS as a chronic illness: psychosocial implications

Early in the epidemic, the public perception of AIDS as a highly fatal acute illness with a rapid downward trajectory was crystallized. Nevertheless, as early as 1991 in the nursing and medical sociology literature, a few investigators were already discussing HIV/AIDS as a chronic illness (for example [1,2]). Shortly thereafter, a number of psychosocial investigations of small groups of long-term AIDS survivors appeared in the literature, although these cases were still seen as infrequent exceptions (see [3] for a review). It was not until the advent of protease inhibitors in 1996, which ushered in the era of highly active antiretroviral therapy (HAART), that the view of AIDS as a chronic illness became widely accepted.These medications were touted in the mass media as ‘miraculous’ because they reduced the risk of opportunistic infections and extended survival by suppressing viral replication and increasing CD4 cell counts.Their availability was said to have “reinserted the word ‘hope’ into the discussion about AIDS for the first time in a decade of treatment trials” [4] (p. 161), and to have offered infected individuals the opportunity for a “second life” [5]. Among those at advanced stages of the disease, recoveries have often been so dramatic that the phenomenon has been dubbed the ‘Lazarus Syndrome’, referring to the seeming rising from the dead made possible by these new medications [6].

Living with HIV infection : adaptive tasks of seropositive gay men

With improved understanding of the natural history of HIV/AIDS and the availability of effective early intervention, HIV infection recently has come to be conceptualized as a chronic illness. As we enter the next phase of the epidemic, insights into the challenges of daily living faced by seropositive persons will aid in designing appropriate interventions to educate for adaptive success and to ameliorate adaptive difficulties. In our analysis of focused interviews with 55 seropositive gay men, we identified three major adaptive challenges: dealing with the possibility of a curtailed life span, dealing with reactions to a stigmatizing illness, and developing strategies for maintaining physical and emotional health. The mens descriptions of these adaptive challenges are discussed in the context of adaptation to other chronic illnesses.

Religion and coping with health-related stress

Abstract The empirical evidence concerning the association between various aspects of religion and adjustment to health-related stressors is reviewed, including examination of whether religion acts as a stress buffer or deterrent. Considerable literature suggests that some aspects of religion are consistently associated with adjustment to illness, and evidence for religion as a stress buffer and as a stress deterrent were found. Potential pathways by which religion may influence adjustment to illness were also delineated, including: (1) providing an interpretive framework or cognitive schema; (2) enhancing coping resources; and (3) facilitating access to social support and promoting social integration. Design, methodological and measurement limitations in the extant literature were noted. Further research is needed to elucidate how religion functions as a natural resource during health-related crises.

Perceived barriers to social support from family and friends among older adults with HIV/AIDS.

Research has found that HIV-infected adults age 50 and older are more socially isolated than younger HIV-infected individuals. This study examines the perceived barriers to obtaining emotional and practical social support from friends and family among 63 older adults (age 50+) living with HIV/AIDS. Many reported they did not receive enough emotional support (42%) or practical assistance (27%). Barriers to obtaining support included: (1) nondisclosure of HIV status; (2) others’ fear of HIV/AIDS; (3) desire to be self-reliant and independent; (4) not wanting to be a burden; (5) unavailability of family; (6) death of friends to AIDS; and (7) ageism. These barriers may explain the greater social isolation of HIV-infected older adults and inform interventions targeted at reducing these barriers.

Continuities and Discontinuities in the Experiences of Felt and Enacted Stigma Among Women With HIV/AIDS

In the post-1996 era, the effectiveness of antiviral therapies (such as highly active antiretroviral therapy [HAART]), which transformed HIV/AIDS into a more manageable disease, raised expectations that the disease’s stigma would decrease. The authors compared focused-interview data from a pre-HAART (1994 to 1996) and a HAART-era (2000 to 2003) sample of African American, Puerto Rican, and White women living with HIV/AIDS to identify changes in stigma experiences and suggest reasons for continued stigmatization. In both eras, general stereotypes about HIV/AIDS, as well as gender- and race-related stereotypes about the disease, were identified. Internalizing any of these stereotypes was a necessary and sufficient condition for feeling stigmatized. Instances of enacted stigmatization were more frequent and intense in the pre-HAART era. Nevertheless, misinformation and irrational fears of contagion, which triggered stigmatizing behavior, persisted into the HAART era. This analysis revealed that although enacted stigmatization has decreased slightly, felt stigma remains a primary adaptational challenge facing women with HIV/AIDS.

Stigma Management Among Gay/Bisexual Men with HIV/AIDS

People with HIV infection are subjected to prejudice, discrimination and hostility related to the stigmatization of AIDS. To manage the stigma of their disease, they mount complex coping strategies. This paper reports results from a qualitative study that examined gay/bisexual mens experiences of living with HIV infection. Unstructured interviews from a diverse sample of 139 men were analyzed to examine how men coped with AIDS-related stigma. We discerned a variety of stigma management strategies that could be arranged along a continuum from reactive to proactive based on the extent to which they implicitly accepted or challenged the social norms and values that underlie the stigmatization of HIV/AIDS. Reactive strategies to cope with stigma involve defensive attempts to avoid or mitigate the impact of stigma, but imply acceptance of the underlying social norms and values that construct the stigma. Examples of reactive strategies include hiding ones HIV status, presenting ones illness as a less stigmatizing one (e.g., cancer), or distancing ones self from more damaging aspects of AIDS-stigma (e.g., attributing infection to blood transfusion). Proactive strategies challenge the validity of the stigma and imply disavowal and resistance of the social norms and values that underlie the stigma. Examples of proactive strategies include engaging in public educational efforts that address misperceptions about HIV transmission and social activism to change the social and political conditions that affect PWA/HIV.