Ethnographic experiences of HIV-positive nurses in managing stigma at a clinic in rural Uganda

This paper explores the workplace experiences of HIV-positive nurses and their attempts to manage HIV/AIDS stigma. An HIV diagnosis can have a major impact on an individual's psychological and emotional wellbeing. Moreover, caring for those suffering from chronic HIV-related illnesses comes with additional stress, which makes providing care more complex. Stigma-reduction and assisting with psychosocial support and wellbeing is an integral part of ensuring that care providers who are HIV-positive have good outcomes both for themselves and their patients. An ethnographic study with HIV-positive nurses was conducted from August 2005 to December 2007 at a Health Centre IV HIV clinic in rural Luweero district, Uganda. Data were gathered through clinical participant observation, informal conversations, recorded life histories, open-ended in-depth interviews and topical focus group discussions. Nurses are in a position to help people through negative life events, yet they may personally experience the same types of negative life events. In the absence of a system to provide support for HIV and AIDS clinical care providers, a group of HIV-positive nurses initiated a support process by creating safe spaces for interacting and seeking psychosocial support among themselves in a relatively secretive way. This process provided the nurses with a solid foundation for developing interventions to assist them through difficult times.     

Impact of age on care pathways of people living with HIV followed up in hospital

The aging population of people living with human immunodeficiency virus (HIV) (PLWH) is exposed to a widening spectrum of non-AIDS-defining diseases. Thus, our objective was to compare the health care offered to PLWH according to age. We conducted a multicenter cross-sectional study on PLWH who consulted at one of 59 French HIV reference centers from 15th to 19th October 2012. Using our survey questionnaires, PLWH self-reported the medical care they received, whether or not tied to HIV infection monitoring, during the previous year. A total of 650 PLWH participated in the survey (median age 48 years, Interquartile range (IQR) 40–54), of which 95 were aged 60 years or over (14.5%). Compared to younger PLWH, 60-and-over PLWH were more often under complementary health insurance cover and less socially deprived based on the French EPICES (Evaluation of Precarity and Inequalities in Health Examination Centers) score. The elderly PLWH presented more comorbidities and less coinfections with hepatitis viruses. During health care, therapeutic education was less often offered to older PLWH (14% vs. 26%, p?=?.01), but this difference was mainly explained by sociodemographic factors and clinical status. Over the previous 6 months, 74% of PLWH who were followed up in hospital had also consulted another doctor, with a mean of 3.75 consultations (±4.18) without difference between age groups. After adjustment for sociodemographic factors and comorbidities, PLWH over 60 years were more likely to have consulted medical specialists as outpatients in the last 6 months (odds ratio [OR]?=?2.63 [1.11–6.20]). Whatever their age, 13% of PLWH had been refused care on disclosure of their HIV status, and 27% of PLWH still did not disclose their HIV status to some caregivers. Coordinated health care throughout patients’ lives is crucial, as health-care pathways evolve toward outpatient care as the patients get older.     

Life priorities in the HIV-positive Asians: a text-mining analysis in young vs. old generation

HIV/AIDS is one of the most urgent and challenging public health issues, especially since it is now considered a chronic disease. In this project, we used text mining techniques to extract meaningful words and word patterns from 45 transcribed in-depth interviews of people living with HIV/AIDS (PLWHA) conducted in Taipei, Beijing, Shanghai, and San Francisco from 2006 to 2013. Text mining analysis can predict whether an emerging field will become a long-lasting source of academic interest or whether it is simply a passing source of interest that will soon disappear. The data were analyzed by age group (45 and older vs. 44 and younger). The highest ranking fragments in the order of frequency were: “care”, “daughter”, “disease”, “family”, “HIV”, “hospital”, “husband”, “medicines”, “money”, “people”, “son”, “tell/disclosure”, “thought”, “want”, and “years”. Participants in the 44-year-old and younger group were focused mainly on disease disclosure, their families, and their financial condition. In older PLWHA, social supports were one of the main concerns. In this study, we learned that different age groups perceive the disease differently. Therefore, when designing intervention, researchers should consider to tailor an intervention to a specific population and to help PLWHA achieve a better quality of life. Promoting self-management can be an effective strategy for every encounter with HIV-positive individuals.     

Extent of disclosure: what perinatally HIV-infected children have been told about their own HIV status

How and when to disclose a positive HIV diagnosis to an infected child is a complex challenge for caregivers and healthcare workers. With the introduction of antiretroviral therapy, pediatric HIV infection has transitioned from a fatal disease to a lifelong chronic illness, thus increasing the need to address the disclosure process. As HIV-infected children mature, begin to take part in management of their own health care, and potentially initiate HIV-risk behaviors, understanding the nature of their infection becomes essential. Guidelines recommend developmentally appropriate incremental disclosure, and emphasize full disclosure to school-age children. However, studies from Sub-Saharan Africa report that disclosure to HIV-infected children is often delayed. Between 2013 and 2014, 553 perinatally HIV-infected children aged 4–9 years were enrolled into a cohort study in Johannesburg, South Africa. We assessed the extent of disclosure among these children and evaluated characteristics associated with disclosure. No children aged 4 years had been told their status, while 4% of those aged 5 years, and 8%, 13%, 16%, and 15% of those aged 6, 7, 8, and 9 years, respectively, had been told their status. Age was the strongest predictor of full disclosure (odds ratio 1.6 per year, p?=?.001). An adult living in the household who was unaware of the child’s status was associated with a reduced probability of disclosure, and knowing that someone at the child’s school was aware of child’s status was associated with an increased probability of disclosure. Among caregivers who had not disclosed, 42% reported ever discussing illness in general with the child, and 17% reported ongoing conversations about illness or HIV. In conclusion, a small minority of school-age children had received full disclosure. Caregivers and healthcare workers require additional support to address disclosure. A broader public health strategy integrating the disclosure process into pediatric HIV treatment programs is recommended.     

Disclosing a diagnosis of dementia: a systematic review

BACKGROUND: The issue of diagnostic disclosure in dementia has been debated extensively in professional journals, but empirical data concerning disclosure in dementia has not previously been systematically reviewed. OBJECTIVE: To review empirical data regarding diagnostic disclosure in dementia. METHODS: Five electronic databases were searched up to September 2003 (Medline, Embase, Cinahl, Sociological Abstracts, Web of Science). Additional references were identified through hand searches of selected journals and bibliographies of relevant articles and books. The title and abstract of each identified paper were reviewed independently by two reviewers against pre-determined inclusion criteria: original data about disclosure were presented and the paper was in English. Any disagreements were resolved by discussion until consensus was reached. Data were extracted independently by two reviewers using a structured abstraction form. Data quality were not formally assessed although each study was critically reviewed in terms of methodology, sampling criteria, response rates and appropriateness of analysis. RESULTS: Fifty-nine papers met the inclusion criteria for detailed review. Many of the studies had methodological shortcomings. The studies reported wide variability in all areas of beliefs and attitudes to diagnostic disclosure and reported practice. Studies of the impact of disclosure indicate both negative and positive consequences of diagnostic disclosure for people with dementia and their carers. CONCLUSIONS: Existing evidence regarding diagnostic disclosure in dementia is both inconsistent and limited with the perspectives of people with dementia being largely neglected. This state of knowledge seems at variance with current guidance about disclosure.     

‘I don't see any point in telling them’: attitudes to sharing genetic information in the family and carrier testing of relatives among British Pakistani adults referred to a genetics clinic

The sharing of genetic information following the diagnosis of a genetic condition can be important for managing familial risks for genetic conditions. This paper explores factors that impede or facilitate the sharing of genetic information within a sample of British Pakistani families. It draws from research investigating understandings of genetics and inheritance, attitudes to prenatal diagnosis and risk communication in the family that used methods of participant observation and interview with adults from 66 families of Pakistani origin referred to a genetics clinic in southern England. We found a lack of English often restricted one partner's access to genetic information and partners fluent in English sometimes withheld information to protect a partner (usually the wife) from blame, stigma or feelings of marital insecurity. Many couples felt genetic information was private to them as a couple and were unwilling to share it with the wider family, commenting on its potentially stigmatizing and emotionally and socially disruptive effects on themselves, their child and their marriage, as well as on the marriage prospects of other family members. Those who sought carrier testing because of a family history did so when considering their own marriage or parenting, sometimes on the insistence of an affected relative, but did not readily discuss carrier testing with other relatives. Despite the complex consanguinity in some families, a family-based approach to risk management is not necessarily any easier among British Pakistanis than other ethnic groups.     

Feature head-start: Conjunction search following progressive feature disclosure

When a colour/orientation conjunction search display is immediately preceded by a display that shows either the colour or the orientation of each upcoming search item, search is faster after colour-preview than after orientation-preview. One explanation for this feature asymmetry is that colour has priority access to attentional selection relative to features such as orientation and size. In support of this hypothesis, we show that this asymmetry persists even after colour and orientation feature search performance is equated. However, this notion was ruled out by our subsequent experiments in which the target was defined by conjunction of colour and size; colour-preview was less helpful than size-preview (even though colour-feature search was faster than size-feature search, for these feature values). A final set of experiments tested size-preview vs. orientation-preview for size/orientation conjunction search, using stimuli for which orientation-feature search was easier than size-feature search. Size-preview produced much faster search than orientation-preview, demonstrating again that ease of feature search does not predict effects of a feature-preview.Overall, size produced the most facilitation when presented as a feature-preview (for both colour/size and size/orientation conjunctions), followed by colour (for colour/orientation conjunction but not for colour/size conjunction) and then orientation (which never facilitated search). Whilst each feature-preview may potentially facilitate search, the transition from feature-preview display to search display could disrupt search processes, because of luminance and/or colour changes. We see evidence for some sort of disruption when the feature-preview slows search. An explanation of this set of results must focus on both facilitation and disruption: these effects are not mutually exclusive, and neither suffices alone, since performance after feature-preview can be significantly better or significantly worse than conjunction baseline.