A Mixed-Methods Longitudinal Investigation of Mothers' Disclosure of HIV to Their Children.
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ABSTRACT:
SUBMITTER: Goodrum NM
PROVIDER: S-EPMC8384049 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BACKGROUND:Peer support provided by experienced and/or trained "expert" women living with HIV has been adopted by prevention of mother-to-child transmission of HIV (PMTCT) programs across sub-Saharan Africa. While there is ample data on HIV status disclosure among non-expert women, there is little data on disclosure among such expert women, who support other women living with HIV. OBJECTIVE:This study compared HIV disclosure rates between expert and non-expert mothers living with HIV, and contextualized quantitative findings with qualitative data from expert women. METHODS:We compared survey data on HIV disclosure to male partners and family/friends from 37 expert and 100 non-expert mothers living with HIV in rural North-Central Nigeria. Four focus group discussions with expert mothers provided further context on disclosure to male partners, extended family and peers. Chi square and Fisher's exact tests were applied to quantitative data. Qualitative data were manually analyzed using a Grounded Theory approach. RESULTS:Two-thirds of the 137 participants were 21-30 years old; 89.8% were married, and 52.3% had secondary-level education. Disclosure to male partners was higher among expert (100.0%) versus non-expert mothers (85.0%), p = 0.035. Disclosure to anyone (93.1% vs 80.8%, p = 0.156), and knowledge of male partners' HIV status were similar (75.7% versus 66.7%, p = 0.324) between expert and non-expert mothers, respectively. With respect to male partners, HIV serodiscordance rates were also similar (46.4% vs 55.6%, p = 0.433). Group discussions indicated that expert mothers did not consistently disclose to their mentored clients, with community-level stigma and discrimination stated as major reasons for this non-disclosure. CONCLUSIONS:Expert mothers experience similar disclosure barriers as their non-expert peers, especially regarding disclosure outside of intimate relationships. Thus, attention to expert mothers' coping skills and disclosure status, particularly to mentored clients is important to maximize the impact of peer support in PMTCT. CLINICAL TRIALS REGISTRATION:Clinicaltrials.gov registration number NCT01936753 (retrospective), September 3, 2013.
| S-EPMC7192376 | biostudies-literature
Project description:Care of children living with HIV comprises various issues, some considered challenging. One of the challenging areas is the serostatus disclosure to HIV-positive children. This study describes the current situation of HIV disclosure among rural children in Zambia and examines the socio-demographic factors promoting disclosure.We used a mixed method approach applying both quantitative and qualitative methods to obtain comprehensive picture of HIV serostatus disclosure for children. Data were collected in Mumbwa district, Zambia (2010-2012), included 57 clinical records of children older than 5 years old. We examined children's age, gender, and cohabitation status with their parents, caregivers' level of education and income, and the relation between children and caregivers. Logistic regression model was applied to examine associations between disclosure and socio-demographic characteristics. Semi-structured interviews with 50 caregivers and 22 HIV-positive children were conducted to qualitatively investigate attitude towards disclosure and support needed.Full disclosure was completed in 17 out of 57 (29.8%) patients. Median ages of patients in disclosed group and non-disclosed group were 10 and 9, respectively (IQR 8.0-13.0, 7.0-11.25). In univariate analyses, older age and male gender has positive relation to the completion of serostatus disclosure. In logistic regression models, cohabitation status with patients' mothers showed positive correlation to the completion of serostatus disclosure. In the interviews with caregivers, all caregivers said that disclosure of serostatus is a necessary process and good for their children, while actual serostatus disclosure rate was low.Serostatus disclosure to HIV-seropositive children is not prevalent in Rural Zambia. Although further researches would be desirable, increased support to caregivers would be beneficial.
| S-EPMC6098826 | biostudies-other
Project description:BACKGROUND:Prompt child HIV testing and treatment is critical; however, children are often not diagnosed until symptomatic. Understanding factors that influence pediatric HIV testing can inform strategies to increase testing. METHODS:A mixed-methods study was conducted at a tertiary hospital in Nairobi, Kenya. Three focus group discussions with health care workers (HCWs) and 18 in-depth interviews with HIV-infected adults with children of unknown status were analyzed using thematic analysis. A structured questionnaire was administered to 116 HIV-infected caregivers of children of unknown status to triangulate qualitative findings. RESULTS:Analysis revealed 3 key periods of the pediatric HIV testing process: decision to test, test visit, and posttest. Key issues included: decision to test: inaccurate HIV risk perception for children, challenges with paternal consent, lack of caregiver HIV status disclosure to partners or older children; test experience: poor understanding of child consent/assent and disclosure guidelines, perceived costs of testing and care, school schedules, HCW discomfort with pediatric HIV testing; and posttest: pessimism regarding HIV-infected children's prognosis, caregiver concerns about their own emotional health if their child is positive, and challenges communicating about HIV with children. Concerns about all 3 periods influenced child testing decisions. In addition, 3 challenges were unique to pediatric HIV: inaccurate HIV risk perception for children; disclosure, consent, and permission; and costs and scheduling. CONCLUSIONS:Pediatric HIV testing barriers are distinct from adult barriers. Uptake of pediatric HIV testing may be enhanced by interventions to address misconceptions, disclosure services, psychosocial support addressing concerns unique to pediatric testing, child-focused HCW training, and alternative clinic hours.
| S-EPMC5877451 | biostudies-literature
Project description:OBJECTIVES:The aim of this study was to estimate the frequency of disclosure to and testing of contacts of patients with hepatitis B virus (HBV) in Zambia. DESIGN:We used a convergent parallel mixed-method research design including a quantitative survey and focus group discussions with patients with HBV. SETTING:A university hospital in Lusaka, Zambia. PARTICIPANTS:79 hepatitis B surface antigen (HBsAg)-positive, HIV-negative, adults (18+ years) receiving HBV care completed a quantitative survey and 32 also participated in a focus group discussion. OUTCOMES AND ANALYSIS:Contacts of patients with HBV were enumerated and patient-reported disclosure, contact testing and contact HBV test results were used to develop a testing cascade. Using multivariable logistic regression, we identified factors associated with disclosure of HBV status. In focus groups, we explored how index patient knowledge and awareness of their condition shaped perspectives on contact disclosure and testing. Focus groups coding and analysis followed a thematic analysis approach. RESULTS:Among 79 patients with HBV (median age 35 years; 26.6% women), the majority reported disclosure to ?1 contact. According to the index patients' knowledge, of 776 contacts enumerated, 326 (42.1%) were disclosed to, 77 (9.9%) were tested, 67 (8.6%) received results and 8 (11.9%) were HBsAg-positive. Increased stigma score was associated with reduced disclosure. In focus groups, HBV awareness, knowledge and stigma emerged as barriers to disclosure and referral of contacts for testing. Association of HBV with HIV-related stigma was also reported as a strong barrier to contact disclosure and testing and to taking antivirals for HBV monoinfection. CONCLUSIONS:HBV contact disclosure and testing were feasible and yielded new diagnoses in Zambia. A better understanding of barriers to seeking HBV testing and treatment is needed to scale-up this important intervention in Africa. TRIALS REGISTRATION NUMBER:NCT03158818.
| S-EPMC6157559 | biostudies-literature
Project description:To explore parental disclosure practices and perceptions among HIV-positive parents in urban China, we conducted in-depth interviews with 29 HIV-positive parents in Beijing in 2011. The disclosure rate was low (17%), and unplanned disclosure was common. Most parents chose not to disclose because of concerns regarding their children's young age, concerns about potentially negative psychological impacts on the children, potential secondary disclosure by the children to others, and perceived stigma associated with HIV infection and the causes of such infection (e.g., homosexual behaviors). Parents considered that an appropriate disclosure should be well-planned, cautious, and a gradual process conducted in a comfortable and relaxed environment when both parents and children were calm. We concluded that it was important to (a) provide professional guidance and services about disclosure to children for HIV-positive parents in China, (b) reduce or eliminate HIV-related stigma, (c) set up support groups among HIV-positive parents, and (d) tailor disclosure strategies for different populations of various demographic and socioeconomic characteristics.
| S-EPMC6320668 | biostudies-literature
Project description:Alexithymia has been associated with poor outcomes in psychotherapy. This association has been attributed to a difficulty in patients processing emotions and engaging in emotional tasks. The possibility of alexithymia being modified by psychotherapy remains a topic of great debate but with little empirical research. In this study a mixed methods longitudinal design was used to better understand alexithymia, emotional processing and change process in psychotherapy. Twelve clients, five with alexithymia, were studied considering the development of alexithymia, emotional awareness, differentiation, regulation and severity of symptoms. The reliable change index was used to interpret the evolution of those emotional variables' scores for each case and thematic analysis was used to analyze individual interviews. Thematic analysis generated several themes, organized in two broad domains: i) perception of emotions and ii) description of change. The three alexithymic patients that changed in alexithymia also changed in at least one of the emotional variables - lack of emotional awareness, emotion differentiation or emotion regulation. Generally, alexithymic patients were able to accomplish change in psychotherapy although they had a tendency to focus on physical complaints, describe changes in a more rational rather than emotional way and present vaguer descriptions of their problems. These results point that alexithymia may change through therapy and reinforces that those changes are associated with improved emotional processing.
| S-EPMC7451369 | biostudies-literature
Project description:BackgroundExisting literature mostly consider HIV disclosure as a static event and investigate its relationship with stress using a cross-sectional design. It is unclear about the dynamic changes of HIV disclosure levels (defined as the number of disclosure targets) and how stress may influence these changes. This study explored different disclosure levels using a person-centered longitudinal approach, examined whether stress could predict these disclosure levels, and investigated if this relationship differed by gender among people living with HIV (PLWH).MethodsData were derived from a prospective cohort study conducted from November 2016 to January 2018 in Guangxi, China. Four hundred forty-four PLWH were included. Participants were assessed on perceived stress, sociodemographic characteristics, and number of HIV disclosure targets at baseline, 6-month, and 12-month follow-ups. Growth mixture modeling was used to characterize disclosure levels based on the changes of disclosure target number. Multinomial logistic regression was used to predict disclosure levels with baseline stress after adjusting for covariates. The interaction effect of stress by gender was examined. Adjusted odds ratio (AOR) with its 95% confidence interval were reported to show the strength of association. RESULTS: Three levels of disclosure were characterized as "Low levels of disclosure" (Level One), "Increased levels of disclosure" (Level Two), and "High levels of disclosure" (Level Three). Accordingly, 355 (81.2%), 28 (6.4%), and 64 (12.4%) of PLWH were categorized respectively under low, increased, and high levels of disclosure. The interaction of baseline stress by gender was significant in differentiating Level One from Three (AOR = 0.85 [0.74 ~ 0.99]) while it was not significant between Level One and Two (AOR = 0.96 [0.81 ~ 1.15]). Compared to female, male PLWH with higher baseline stress had lower probability to have consistent high disclosure levels over time. PLWH who were married/cohabited had lower probability of being classified into consistent high levels of disclosure than low level (AOR = 0.43 [0.19 ~ 0.94]).ConclusionsThere was gender difference in the relationship between stress and levels of HIV disclosure. To promote HIV disclosure, gender tailored interventions should be employed to help PLWH cope with stress.
| S-EPMC7852186 | biostudies-literature
Project description:BACKGROUND:With increasing access to effective Anti-Retroviral Therapy (ART), the proportion of children who survive into later childhood with HIV has increased. Consequently, caregivers are constantly being confronted with the dilemma of 'if', 'when', and 'how' to tell their children living with HIV their status. We aimed to determine the prevalence and predictors of disclosure and explore the barriers caregivers face in disclosing HIV status to children living with HIV in Gombe, northeast Nigeria. METHODS:We conducted a sequential, explanatory, mixed-methods study at the specialist Paediatric HIV clinic of the Federal Teaching Hospital Gombe, northeast Nigeria. The quantitative component was a cross sectional, questionnaire-based study that consecutively recruited 120 eligible primary caregivers of children (6-17 years) living with HIV. The qualitative component adopted an in-depth one-on-one interview approach with 17 primary caregivers. Primary caregivers were purposively selected to include views of those who had made disclosure and those who have not done so to gain an enhanced understanding of the quantitative findings. We examined the predictors of HIV status disclosure to infected children using binary logistic regression. The qualitative data was analysed using a combined deductive and inductive thematic analysis approach. RESULTS:The mean age of the index child living with HIV was 12.2 ± 3.2 years. The prevalence of disclosure to children living with HIV was 35.8%. Children living with HIV were 10 times more likely to have been told their status if their caregivers believed that disclosure had benefits [AOR = 9.9 (95% CI = 3.2-15.1)], while HIV-negative compared to HIV-positive caregivers were twice more likely to make disclosures [AOR = 1.8 (95%CI = 0.7-4.9)]. Girls were 1.45 times more likely than boys to have been disclosed their HIV positive status even after adjusting for other variables [AOR = 1.45 (95% CI = 0.6-3.5)]. Caregivers expressed deep-seated feeling of guilt and self-blame, HIV-related stigma, cultural sensitivity around HIV, and fears that the child might not cope as barriers to non-disclosure. These feeling were more prominent among HIV-positive caregivers. CONCLUSION:The process of disclosure is a complex one and caregivers of HIV positive children should be supported emotionally and psychologically to facilitate disclosure of HIV status to their children. This study further emphasises the need to address HIV-related stigma in resource constrained settings.
| S-EPMC7085175 | biostudies-literature
Project description:BackgroundEvidence suggests that disclosure of HIV status between partners may influence prevention of maternal-to-child transmission of HIV (PMTCT) outcomes. We report partner disclosure in relation to maternal antiretroviral therapy (ART) uptake and adherence, and MTCT among postpartum HIV-infected Malawian women.MethodsA cross-sectional mixed-method study was conducted as part of a nationally representative longitudinal cohort study. Between 2014-2016, all (34,637) mothers attending 54 under-5 clinics with their 4-26 week-old infants were approached, of which 98% (33,980) were screened for HIV; infants received HIV-1 DNA testing. HIV-exposure was confirmed in 3,566/33,980 (10.5%). Baseline data from mothers who were known to be HIV-infected at time of screening were included in the current analysis. Guardians (n = 17), newly diagnosed HIV-infected mothers (n = 256) and mothers or infants with undetermined HIV status (n = 30) were excluded. Data collected included socio-demographics, partner disclosure, maternal ART uptake, and adherence. Between 2016-2017, in-depth interviews and focus group discussions were conducted with adult mothers (n = 53) and their spouse/cohabiting partners (n = 19), adolescent mothers (n = 13), lost-to-follow up (LTFU) mothers (n = 22), community leaders (n = 23) and healthcare workers (n = 154).ResultsOf 3153 known HIV-infected mothers, 2882 (91.4%) reported having a spouse/cohabiting partner. Among 2882 couples, both partners, one partner, and neither partner disclosed to each other in 2090 (72.5%), 622 (21.6%), and 169 (5.9%), respectively. In multivariable models, neither partner disclosing was associated with no maternal ART (aOR 4.7; 95%CI 2.5-8.8), suboptimal treatment adherence (aOR 1.8; 95%CI 1.1-2.8) and MTCT (aOR 2.1; 95%CI 1.1-4.1). Women's fear of blame by partners was central to decisions not to disclose within couples and when starting new relationships. LTFU mothers struggled to accept and disclose their status, hindering treatment initiation; some were unable to hide ART and feared involuntary disclosure.ConclusionPartner disclosure seems to play an important role in women's decisions regarding ART initiation and adherence. Inter-partner non-disclosure was associated with no ART uptake, suboptimal treatment adherence and MTCT.
| S-EPMC6660128 | biostudies-literature
Project description:A growing body of evidence suggests that news media which includes a sympathetic portrayal of a mother bereaved by substance use can increase public support for harm reduction initiatives. However, the extent to which such news media coverage occurs in Canada is unknown, and research has not documented how the news media in Canada covers such stories. We undertook a mixed-method secondary analyses of 5681 Canadian newspaper articles on harm reduction (2000-2016). Quantitative analyses described the volume and content of harm reduction reporting featuring a mother whose child's death was related to substance use while qualitative thematic analysis provided in-depth descriptions of the discourses underlying such news reporting. Newspaper articles featuring a mother whose child's death was related to substance use were rarely published (n = 63; 1.1% of total harm reduction media coverage during the study period). Deductive content analysis of these 63 texts revealed that coverage of naloxone distribution (42.9%) and supervised drug consumption services (28.6%) were prioritized over other harm reduction services. Although harm reduction (services or policies) were advocated by the mother in most (77.8%) of these 63 texts, inductive thematic analysis of a subset (n = 52) of those articles revealed that mothers' advocacy was diminished by newspaper reporting that emphasized their experiences of grief, prioritized individual biographies over structural factors contributing to substance use harms, and created rhetorical divisions between different groups of people who use drugs (PWUD). Bereaved mothers' advocacy in support of harm reduction programs and services may be minimized in the process of reporting their stories for newspaper readers. Finding ways to report bereaved mothers' stories in ways that are inclusive of all PWUD while highlighting the role of broad, structural determinants of substance use has the potential to shift public opinion and government support in favour of these life-saving services.
| S-EPMC10681218 | biostudies-literature