Self-help and life quality in persons with HIV disease

This study examined factors contributing to life quality in persons with HIV disease. Selected concepts and statements in a model designed to explain self-help and life quality in persons with chronic conditions were tested. Eighty-three persons with a diagnosis of HIV disease 58 with AIDS completed a demographic profile and four instruments to measure dependence for help with daily living, enabling skills, self-help and life quality. The instruments had been used by researchers testing the Self-Help Model on persons with other chronic diseases. Direction and magnitude of the relationships, revealed through causal modelling procedures, were consistent with previous tests of the model. Diagnosis of AIDS explained 29 of the variance in dependency, but had no explanatory value for enabling skill. Enabling skill b 5 0.32 and dependency b 5 2 0.49 explained 33 of the variance in self-help. Self-help b 5 0.59 explained 34 of the variance in life quality. Results suggest that self-help is influenced negatively by dependency and positively by enabling skill. Enabling skill appears to mediate the negative effect of dependency on self-help and can be a target of interventions to improve quality of life in persons with HIV disease.     

Risk and protective factors for health-related quality of life among persons aging with HIV

For persons living with HIV, health-related quality of life (HRQOL) may be threatened by physical and mental conditions but may be protected by positive psychological traits. We performed an exploratory look at the risk and protective factors for HRQOL in older adults living with HIV. Cross-sectional analyses of baseline data from the Rush Center of Excellence on Disparities in HIV and Aging (CEDHA), a community-based cohort of persons ages ≥50 living with HIV (n?=?176) were performed. Analyses examined the relationship between risk/protective factors and two outcomes (i.e., self-reported health status [SRHS] and the healthy days index [HDI]). Having good/excellent health was associated with being a non-smoker (p?=?0.002), greater purpose in life (p?=?0.006), higher education (p?=?0.007), fewer depressive symptoms (p?=?0.004), fewer disabilities (p?=?0.000), and less loneliness (p?=?0.002) in bivariate analyses. Males (p?=?0.03) and African Americans/Blacks (p?=?0.03) reported higher HDI. Fewer depressive symptoms (p?=?0.000), disabilities (p?=?0.002), adverse life events (p?=?0.0103), and loneliness (p?=?0.000) were associated with higher HDI in bivariate analyses. In a logistic regression model, greater purpose in life, fewer disabilities, and being a non-smoker were associated with better SRHS after adjusting for covariates. For African Americans/Blacks, having fewer depressive symptoms and disabilities were associated with higher HDI after adjusting for covariates. Disabilities, depression, smoking status, race/ethnicity, and purpose in life were significantly associated with HRQOL. Findings support the need for research to examine the influence of cultural interpretations of life quality and focus on promoting physical function, smoking cessation, and psychological wellness in persons aging with HIV.     

Perceived barriers to employment among persons living with HIV/AIDS

This study examined factors associated with contemplating returning to work among unemployed persons living with HIV/AIDS (PLHA) in a large urban city in the United States. A mailed, self-administered survey gathered information from 757 unemployed PLHA. Chi-square and logistic regression analyses were used to determine associations between contemplating returning to work and sociodemographic characteristics, health factors and perceived barriers to employment. We found that most unemployed PLHA (74%) were thinking of returning to work, but perceived significant barriers such as loss of disability income benefits (73%), loss of publicly-funded health insurance (67%) and workplace discrimination (66%). Univariate analyses indicated that contemplating returning to work was significantly associated with sociodemographic characteristics, health factors and perceived barriers to employment in the following areas: (1) availability of health insurance, (2) personal health and physical ability, (3) health concerns related to working and the work environment, and (4) current job skills. Multivariate analyses indicated that: gender, age, race/ethnicity, health insurance type, health status and the belief that health will improve if employed were independently associated with contemplating returning to work. In summary, a substantial proportion of unemployed PLHA may contemplate re-entering the workforce. Assistance is needed to help PLHA address perceived barriers that may prevent them from seeking employment.     

The impact of age on the quality of life in persons with HIV infection

The authors administered the Medical Outcomes Study (MOS 20) Short Form Health Survey to 369 persons with HIV disease. The MOS survey measures six domains of health: physical function, role function, social function, mental health, health perception, and pain. Additional data included sociodemographics, HIV risk group, time since HIV diagnosis, symptoms (dyspnea, diarrhea, fever, chills, sweats, weight loss, weakness, numbness, memory trouble, seizures), and CD4 lymphocyte count within 3 months of the MOS survey. Bivariate analyses revealed worse MOS scores associated with older age in five health domains: physical function (p less than .01), health perception (p <.10), role function (n.s.), social function (n.s.), and mental health (n.s.). Older subjects reported less pain. When controlling for CD4 count and for sociodemographic and clinical variables, older age was significantly (p less than .05) associated with worse MOS scores in physical function, social function, and health perception, nonsignificantly associated with worse MOS scores in role function and mental health, and nonsignificantly associated with less reporting of pain.     

The role of industry in improving quality of life for persons with an ostomy: a Canadian consensus

Financial and clinical resources (which include 260 enterostomal therapy nurses nationwide) to provide clinical and rehabilitative expertise to the estimated 50,000 to 60,000 Canadians living with an ostomy are limited. Hence, many persons with an ostomy fall through the cracks in the early pre- and postoperative period or are lost to follow-up afterdischarge. Problems and issues related to ostomy management continue to surface throughout their lives. As a result,the time required for rehabilitation is often lengthy, affecting the person's quality of life. The First Canadian Enterostomal Therapy Nurses' Advisory Council consisting of 10 Canadian enterostomal therapy nurses met in February 2004 to identify key issues and concerns for Canadians living the ostomy experience and to identify gaps in information and services available before surgery, during the immediate postoperative period, and as the time from surgery lengthened and patients moved through age-related life issues. The two most important gaps identified were the development of quality, pertinent resources and the dissemination of those resources. The Council also identified potential strategies to bridge these gaps, including utilizing the resources of manufacturer Customer Service departments to follow a communications protocol to provide information to patients, retailers, and providers. Finally, a process map from which individual ostomy manufacturers can build programs and processes for improving patient/provider/manufacturer communication was developed.     

Perceived barriers to smoking cessation and perceptions of electronic cigarettes among persons living with HIV

Smoking is more prevalent in persons living with HIV than the general population and is linked to increased morbidity and mortality. Some have suggested that based on current knowledge of harms and benefits, it may be feasible to advise smokers who are unable or unwilling to quit to switch to electronic cigarettes (ECs) as a less harmful alternative. We conducted 25 qualitative interviews with HIV-positive current or former smokers to explore perceived barriers to smoking cessation and perceptions of ECs. A high level of nicotine dependence, smoking as a form of stress management, motivational factors (including lack of readiness, low self-efficacy, ambivalence toward quitting), and having a social network of smokers were identified as cessation barriers. Low knowledge of ECs and uncertainty about EC safety and efficacy were barriers to EC uptake. However, current smokers indicated a willingness to try ECs. This study provides evidence that HIV-positive smokers face significant individual and environmental barriers to cessation. ECs may have potential as a harm reduction strategy in this population; however, there is a significant need for education regarding use and relative safety.     

Living with HIV but without medical care: barriers to engagement

This cross-sectional study examined factors associated with the receipt of HIV medical care among people who know their HIV status and are not newly diagnosed with HIV. Interviews were conducted with 1133 HIV-positive individuals between October 2003 and July 2005 who enrolled in 1 of 10 outreach programs across the country. The sample was predominantly non-white (86%), male (59%), and unstably housed (61%), with a past history of cocaine use (68%). Twelve percent had received no HIV medical care in the 6 months prior to the interview. Those with no care were similar to those who received some HIV care in sociodemographic characteristics, but in multivariate analysis were less likely to have a case manager (p < 0.001) or use mental health services (p < .001), had lower mental health status scores (p < 0.05), were more likely to be active drug users (p < 0.01), had greater unmet support service needs (p < 0.05) and reported that health beliefs were a barrier to care (p < 0.001). Interventions to engage people in HIV medical care need to address barriers to care through linkages with mental health, substance abuse treatment and support services, and address the health beliefs that deter people from seeking care.     

A community-based study of barriers to HIV care initiation

Timely treatment of HIV infection is a public health priority, yet many HIV-positive persons delay treatment initiation. We conducted a community-based study comparing HIV-positive persons who received an HIV diagnosis at least 3 months ago but had not initiated care (n=100) with a reference population of HIV-positive persons currently in care (n=115) to identify potential barriers to treatment initiation. Study participants were mostly male (78.0%), and persons of color (54.9% Latino, 26.3% black), with median age 37.8 years. Median time since HIV diagnosis was 3.7 years. Univariate analysis revealed that those never in care differed substantially from those currently in care with regard to sociodemographics; HIV testing and counseling experiences; perceived barriers to care; and knowledge, attitudes, and beliefs regarding HIV. Factors independently associated with never initiating HIV care were younger age (adjusted odds ratio [AOR]=0.93; 95% confidence interval [CI]: 0.88, 0.99), shorter time since diagnosis (AOR=0.87; 95% CI: 0.77, 0.98), lacking insurance (AOR=0.11; 95% CI: 0.03, 0.35), not knowing someone with HIV/AIDS (AOR=0.09; 95% CI: 0.03, 0.30) not disclosing HIV status (AOR=0.13; 95% CI: 0.02, 0.70), not receiving help making an HIV care appointment after diagnosis (AOR=0.04; 95% CI: 0.01, 0.14), and not wanting to think about being HIV positive (AOR=3.57; 95% CI: 1.22, 10.46). Our findings suggest that isolation and stigma remain significant barriers to initiating HIV care in populations consisting primarily of persons of color, and that direct linkages to HIV care at the time of diagnosis are critical to promoting timely care initiation in these populations.     

Health-related quality of life of persons with sarcoidosis

STUDY OBJECTIVES: To describe the health-related quality of life (HRQL) and mental health of persons with sarcoidosis, as well as to assess physician-patient agreement about the presence of sarcoidosis symptoms. DESIGN AND SETTING: Cross-sectional study at three university medical center outpatient pulmonary clinics. PATIENTS: One hundred eleven outpatients with sarcoidosis seen between March and July 2002. MEASUREMENTS: The HRQL of sarcoidosis patients was measured using generic and respiratory disease-specific forms (ie, Medical Outcomes Study 36-item short form survey [SF-36] and the St. George respiratory questionnaire [SGRQ], respectively). Depression was assessed using the Center for Epidemiologic Studies depression scale, and stress was assessed with the perceived stress scale four-item questionnaire. The kappa-statistic was calculated to compare physician-patient agreement in assessing sarcoidosis-related symptoms. RESULTS: Patients had moderate-to-severe reductions across all measured domains in perceived HRQL. Those patients who were prescribed oral corticosteroids had lower scores on both the SF-36 and the SGRQ than did those patients who were not. These differences were statistically significant and clinically important. The prevalence of depression was 66%, and that of significant stress was 55%. Spirometry values (FEV(1), 82% predicted; FVC, 86% predicted) were associated neither with HRQL nor with patients' perceived sarcoidosis symptoms, although they were correlated (r = 0.43; p < 0.0001) with physicians' perceptions that patients were symptomatic. Physicians and patients had only fair agreement (kappa-statistic range, 0.24 to 0.36 [by center]) in assessing perceived sarcoidosis symptoms. CONCLUSIONS: Outpatients with sarcoidosis had global reductions in measured HRQL and mental health indexes, although patients receiving therapy with oral corticosteroids had significantly worse HRQL. Experienced physicians based their assessments of patients' sarcoidosis symptoms on measures that were not related to issues of importance to patients. HRQL measurement may provide a unique insight into the impact that sarcoidosis may have on a patient's life that is not captured in traditional physiologic measures.     

Challenges impacting on the quality of care to persons living with HIV/AIDS and other terminal illnesses with reference to Kanye community home-based care programme

HIV/AIDS has been found to be a challenging disease to humanity, its challenge spin-offs falling especially on to the caregivers of those infected and affected by the virus. This paper aims to discuss the challenges influencing the state of caregiving in the Kanye community home-based care (CHBC) programme in Botswana. The study was qualitative in design and explorative in nature, involving 82 primary caregivers in focus group discussions, and 5 CHBC nurses in individual interviews. Caregivers were found challenged by lack of community networks support, inadequate sanitary and care packages, poor shelter compromising privacy, inadequate income and food for their clients, inadequate care motivation as their volunteerism does not attract any payment, inadequate health personnel to offer psychosocial support like counselling, and an unconducive caring environment generally. Putting in place policies to redress caregivers' poverty, helping caregivers start income-generating projects, increasing community assistance and caregiving facilities are recommended as factors to address caregiver challenges.     

Support group participation among persons with HIV: demographic characteristics and perceived barriers

Support groups are widely available for persons living with HIV and some evidence supports their efficacy. However, limited information exists regarding characteristics of those who utilize HIV support groups. The present study examined demographic characteristics and perceived barriers of attenders and non-attenders of HIV support groups via a mail survey. The 35 respondents were predominantly white (71.4%), male (65.7%), homosexual/bisexual (57.1%) and diagnosed with HIV within the last five years (62.8%). Results suggested that HIV support group attenders had higher educational attainment and a longer time since diagnosis than non-attenders. Respondents who expressed interest in HIV support group participation were diagnosed more recently than those who did not express interest. Respondents who had attended other types of support groups reported fewer perceived barriers to participation in HIV support groups. Overall, findings suggest that the perception of barriers may be related to interest and participation in support groups for HIV and other problems.     

Main and interactive effects of emotion dysregulation and HIV symptom severity on quality of life among persons living with HIV/AIDS

HIV symptoms are associated with a poorer quality of life (QOL) among persons living with HIV/AIDS (PLWHA). Yet, there is little understanding of emotional factors that impact the relation between HIV symptom severity and QOL. The present study examined the main and interactive effects of emotion dysregulation and HIV symptom severity on multiple indices of QOL, including physical (impact of physical problems related to HIV), psychological (frequency of negative feelings), independence (necessity of medical treatment to function in daily life), social (feelings of acceptance), environmental (satisfaction with living conditions and medical care), and spiritual (fear of the future and death) among a sample of 74 PLWHA. Participants (72.9% male; mean age?=?48.24, SD?=?7.85) were recruited from AIDS Service Organizations in the United States. Results indicated that higher HIV symptom severity is significantly associated with lower physical and independence QOL, whereas higher emotion dysregulation is significantly associated with lower scores on all measured aspects of QOL. Additionally, results indicated that the interaction of emotion dysregulation and HIV symptom severity was significantly associated with both physical and environmental QOL. The form of the observed significant interactions indicated that HIV symptom severity was related to poorer QOL among those with lower (versus higher) emotion dysregulation. The present findings indicate that emotion dysregulation is related to QOL among PLWHA and may interact with HIV symptom severity to negatively impact certain aspects of QOL. Given the profound impact that HIV has on QOL, this finding is important in understanding these relations mechanistically, and may be important in the development of novel psychological treatment strategies.     

Reforming care for persons near the end of life: the promise of quality improvement

Most people in developed countries will live with a serious, eventually fatal, chronic condition for months or years before dying; yet, the delivery of health care services has only just recently begun adapting to this reality. Quality improvement methods have been effective in helping clinical services to make substantial changes quickly. Quality improvement requires stating an aim, measuring success, and testing possible improvements. The testing of changes requires a clinical team to Plan, Do, Study, and Act on new insights (the "PDSA cycle"). Repeated PDSA cycles generate deep understanding of complex systems and make sustainable improvements rapidly. This paper discusses a composite case study in a nursing home setting, which builds on experience with multisite collaborative efforts and introduces quality improvement methods in the context of end-of-life care.     

Individual and structural factors influencing HIV care linkage and engagement: Perceived barriers and solutions among HIV-positive persons

ABSTRACT

To meet the National HIV/AIDS Strategy’s goals of reducing and preventing HIV transmission, understanding factors that shape HIV-positive persons’ care-seeking behaviors is critical. Accordingly, this study examined factors that affect HIV care linkage and engagement. Six focus groups were conducted with 33 HIV-positive persons living in North Carolina. A variety of factors influenced care behaviors, including: structural and policy factors, relationship with HIV care systems, and individuals’ personal characteristics. Participants also provided solutions for addressing specific factors to care. Improving clinical services and utilizing context-specific strategies can help facilitate greater care linkage and engagement.