“Even if she’s really sick at home, she will pretend that everything is fine.”: Delays in seeking care and treatment for advanced HIV disease in Kinshasa, Democratic Republic of Congo

Abstract

Introduction HIV prevalence in the Democratic Republic of Congo (DRC) is estimated to be 1.2%, and access to HIV testing and treatment remains low across the country. Despite advances in treatment, HIV continues to be one of the main reasons for hospitalisation and death in low- and middle-income countries, including DRC, but the reasons why people delay seeking health-care when they are extremely sick remain little understood. People in Kinshasa, DRC, continue to present to health-care facilities in an advanced stage of HIV when they are close to death and needing intensive treatment. Methods This qualitative study was conducted in one health-care facility in Kinshasa. A total of 24 in-depth interviews with purposively selected health-care workers, patients and care-givers were conducted. Patients were currently or previously hospitalised with advanced HIV, defined as CD4 count < 200 cells/μl. Patients included those who had previously started antiretroviral treatment (ART), and those who had not. Participant observation was also carried out. Interviews were audio-recorded, translated from French and Lingala into English, transcribed, coded and thematically analysed using NVivo. Results The main reasons for delaying access to health-care were stigmatisation, religious beliefs and limited economic resources. Stigmatisation meant that people feared disclosing their HIV status and thus did not receive support from their families. Religious leaders were reported to have encouraged people not to take ART. Patients delayed seeking treatment as they could not afford it, and health-care workers believed that staff at other facilities in Kinshasa were delaying HIV diagnoses for economic benefit. Conclusions Delays in accessing care and treatment linked to stigma, religious beliefs and economic factors contribute to explaining the persistence of advanced HIV within this context. Access to free HIV-testing, ART and treatment of opportunistic infections; counselling; training of health-care workers; support for care-givers and stigma reduction strategies are urgently needed to prevent unnecessary deaths.

ART use and associated factors among HIV positive caregivers of orphans and vulnerable children in Tanzania

“…These disparities in ART use between male and female caregivers in the middle through fifth wealth quintiles were not clear, thus a need for further research to clarify the observed relationship. Overall, other studies have observed higher likelihood of ART use with better economic status [7,14,57,58,69].…”

“…Rural populations have been reported to be more communal than urban populations [56]. This may be one of the likely routes for better social support structures which are key to ART use [7,55,57]. While more studies may be needed to explain the mechanisms through which ART use and rural-urban residences are related, overall, there is a need to tailor interventions to the specific needs of each area [58] to ensure that all PLHIV are on treatment.…”

“…Also, they may be facing similar environmental obstacles or enablers to ART use, such as distance to facility, which may further explain the relationship. It has been observed that social support from the family, friends or peers (which is more likely among those in the same vicinity) is an important dimension of ART use [7,55,57,70].…”

Understanding Stigmatisation: Results of a Qualitative Formative Study with Adolescents and Adults in DR Congo

“…To our knowledge, twenty-three studies specifically researching stigma in DR Congo (DRC) have been published. Twenty-one have concentrated on sex-related stigma, such as female survivors of stigma concerning sexual violence (Greiner et al 2014;Verelst et al 2014;Babalola et al 2015;Scott et al 2015;Murray et al 2018a, b;Wachter et al 2018) and male survivors, (Christian et al 2011), and HIV (Newman et al 2012;Musumari and Feldman 2013;Gebremedhin and Tesfamariam 2017;Tshingani et al 2017;Venables et al 2019). Other studies have discussed stigma related to intimate partner violence (Kohli et al 2015;Glass et al 2018), abortion (Casey et al 2019;Steven et al 2019), syphilis (Nkamba et al 2017), fistula (Young-Lin et al 2015) and contraception-use (Muanda et al 2018).…”

Risk Factors for Cardiovascular Disease in a Congolise Art-Naive HIV Population: A Cross-Sectional Study.

“…The coexistence of infectious diseases and non-communicable diseases is well documented in developed countries, and the intensity of this comorbidity is incomparable in SSA [11]. In RDC Despite low prevalence of HIV infection (1.2% in the general population [12][13][14][15].There are no studies that have assessed cardiovascular risk factors in patients living with HIV before taking ARVs. However, a comparison of the frequency of CVD reported a prevalence of 20%, 17.4% and 16.7% respectively of chronic renal failure, heart failure and stroke in PLWH.…”