Top

Published in:

Open Access 01-12-2024 | Human Immunodeficiency Virus | Research

Caregivers’ experiences of accessing HIV Early Infant Diagnosis (EID) services and its barriers and facilitators, India

Authors: Kalyani Nikhare, Nilesh Gawde, Suchit Kamble, Noopur Goel, Sushmita Kamble, Swapna Pawar, Pratik More, Neha Kapoor, Vinita Verma, Bhawani Singh Kushwaha, Chinmoyee Das, Shobini Rajan

Published in: BMC Health Services Research | Issue 1/2024

Abstract

Background

India has rolled out Early Infant Diagnosis (EID) program for HIV infection in all states. EID program consists of testing of Infants exposed to HIV periodically over 18 months of age which is a multi-step complex testing cascade. Caregivers represent the primary beneficiary of EID program i.e., infants exposed to HIV and face multiple challenges to access EID services. As part of national EID program outcome assessment study, this study narrates caregivers’ perspectives on barriers and facilitators to access and utilize EID services.

Methods

The study was conducted in 31 integrated counselling and testing centres (ICTCs) located in 11 high burden HIV states. A total of 66 in-depth interviews were conducted with caregivers’ of infants enrolled in EID program. Thematic analysis was carried out to help identify themes underlying barriers and facilitators to access EID services and utilization from caregivers’ perspectives.

Results

The stigma and discrimination prevalent in society about HIV remains a key demand side (caregiver-level) barrier. Non-disclosure or selective disclosure of HIV status led to missed or delayed EID tests and delayed HIV diagnosis and initiation of Anti-Retroviral Therapy (ART) for infants exposed to HIV. On supply side (health system-level), accessibility of healthcare facility with EID services was reported as a key barrier. The distance, time and cost were key concerns. Many caregivers faced difficulties to remember the details of complex EID test schedule and relied on a phone call from ICTC counsellor for next due EID test. Delayed EID test results and lack of communication of test results to caregiver were reported as primary barriers for completing the EID test cascade.

Discussion

The study reports caregiver-level and health system-level barriers and facilitators for access to EID services from the caregivers’ perspectives. While, decentralisation and single window approaches can improve the access, timely communication of test results to the caregiver also need to be built in with appropriate use of technology. A holistic intervention including PLHIV support networks and the peer-led support mechanisms would be useful to address societal factors.

Conclusion

The study findings have high significance for developing program implementation strategies to improve access and to build right-based and patient-centred EID services.

Bhatta M, Dutta N, Nandi S, Dutta S, Saha MK. Mother-to-child HIV transmission and its correlates in India: systematic review and meta-analysis. BMC Pregnancy Childbirth. 2020;20(1):509.CrossRefPubMedPubMedCentral

WHO antiretroviral therapy for infants and children. Report of the WHO Technical Reference Group, Paediatric HIV/ART Care Guideline Group meeting. Geneva: World Health Organization. 2008. Available from: https://www.who.int/hiv/pub/paediatric/WHO_Paediatric_ART_guideline_rev_mreport_2008.pdf?ua=1.

National AIDS Control Organization & ICMR-National Institute of Medical Statistics. India HIV estimates 2021: fact sheet. New Delhi: NACO, Ministry of Health and Family Welfare, Government of India; 2022.

Violari A, Paed FC, Cotton MF, Med M, Babiker AG, Jean-Philippe P. Early antiretroviral therapy and mortality among HIV-Infected infants. N Engl J Med. 2008;12.

Kumar P, Mahajan R, Jain K, Shevkani M. Early infant diagnosis: a new tool of HIV diagnosis in children. Indian J Community Med. 2011;36(2):139.CrossRefPubMedPubMedCentral

Paranjpe M, Phakade SS, Ingole RA, N., Mehta R, P. Early infant diagnosis (EID) of HIV: an experience at a Tertiary Care Hospital in India. World J AIDS. 2012;02(01):1–5. https://doi.org/10.4236/wja.2012.21001.CrossRef

Wexler C, Nazir N, Maloba M, Brown M, Goggin K, Gautney B, et al. Programmatic evaluation of feasibility and efficiency of at birth and 6-week, point of care HIV testing in Kenyan infant. PLoS ONE. 2020;15(10):e0240621. https://doi.org/10.1371/journal.pone.0240621.CrossRefPubMedPubMedCentral

Ankunda R, Cumber SN, Atuhaire C, et al. Loss to follow-up and associated maternal factors among HIV-exposed infants at the Mbarara Regional Referral Hospital, Uganda: a retrospective study. BMC Infect Dis. 2020;20:235. https://doi.org/10.1186/s12879-020-04964-1.CrossRefPubMedPubMedCentral

Kiilu EM, Karanja S, Kikuvi G. Peter Wanzala (2019); Caregiver factors influencing seeking of Early Infant Diagnosis (EID) of HIV services in selected hospitals in Nairobi County, Kenya: A qualitative Study; International Journal of Scientific and Research Publications (IJSRP) 9(4) (ISSN: 2250–3153), https://doi.org/10.29322/IJSRP.9.04.2019.p8825.

10.

Hanna LE, Siromany VA, Annamalai M, Karunaianantham R, Swaminathan S. Challenges in the early diagnosis of HIV Infection in infants: experience from Tamil Nadu, India. Indian Pediatr. 2015;52(4):307–9.CrossRefPubMed

11.

Seth A, Chandra J, Gupta R, Kumar P, Aggarwal V, Dutta A. Outcome of HIV exposed infants: experience of a regional pediatriccenter for HIV in North India. Indian J Pediatr. 2012;79(2):188–93.CrossRefPubMed

12.

Khanam M, Goswami S, Mukhopadhyay P. Effectiveness of early infant diagnosis (EID) in detecting the Serostatus of HIV-Exposed infants and children. J ObstetGynecol India. 2015;65(5):315–9.CrossRef

13.

Joshi U, Oza U, Solanki A, Vyas S, Modi H. Early infant diagnosis of HIV in India—early results and sero-positivity determinants. Open J Prev Med. 2012;2:318–25. https://doi.org/10.4236/ojpm.2012.23046.CrossRef

14.

Goswami S, Chakravorty PS. Prevention of parent to child transmission of HIV (PPTCT): an effort of 4 years in a tertiary centre. J ObstetrGynecol India. 2011;61:394–8.

15.

Panditrao M, Darak S, Kulkarni V, Kulkarni S, Parchure R. Sociodemographic factors associated with loss to follow-up of HIVinfected women attending a private sector PMTCT program in Maharashtra, India. AIDS Care. 2011;23:593–600.CrossRefPubMed

16.

Gupta A, Singh G, Kaushik P, Joshi B, Kalra K, Chakraborty S. Early diagnosis of HIV in Children below 18 months using DNA PCR Test—Assessment of the effectiveness of PMTCT interventions and challenges in early initiation of ART in a Resource-Limited setting. J Trop Pediatr. 2013;59(2):120–6.CrossRefPubMed

17.

Adeniyi VO, Thomson E, Goon DT, Ajayi IA. Disclosure, stigma of HIV positive child and access to early infant diagnosis in the rural communities of OR Tambo District, South Africa: a qualitative exploration of maternal perspective. BMC Pediatr. 2015;15(1):98. https://doi.org/10.1186/s12887-015-0414-8.CrossRefPubMedPubMedCentral

18.

Etoori D, Renju J, Reniers G, et al. If the results are negative, they motivate us’. Experiences of early infant diagnosis of HIV and engagement in option B. Glob Public Health. 2021;16(2):186–200. https://doi.org/10.1080/17441692.2020.1795220.CrossRefPubMed

19.

Hampanda KM, Nimz AM, Abuogi LL. Barriers to uptake of early infant HIV testing in Zambia: the role of intimate partner Violence and HIV status disclosure within couples. AIDS Res Therapy. 2017;14(1):17. https://doi.org/10.1186/s12981-017-0142-2. PMID: 28320431; PMCID: PMC5360055.CrossRef

20.

Kamble S, Gawde N, Goel N, Thorwat M, Nikhare K, Bembalkar S et al. Access, timeliness and retention for HIV testing under early infant diagnosis (EID) program, India. Sci Rep. 2023;13(1):5638. https://doi.org/10.1038/s41598-023-32056-y.

21.

Bazira J, Apio K, Kyambadde M, Nakawungu. Ruth & Nduhuura, Davis &Ayebarirwe, Memory & Orikiriza, Patrick & Kumbakumba, Elias. (2022). Good Utilization, Low Completion Rates of Early Infant HIV Diagnostic Services at a District Hospital in Rural South Western Uganda. https://doi.org/10.21203/rs.3.rs-1342532/v1.

22.

Suryavanshi N, Kadam A, Gupte N, et al. A mobile health-facilitated behavioural intervention for community health workers improves exclusive breastfeeding and early infant HIV diagnosis in India: a cluster randomized trial. J Int AIDS Soc. 2020;23(7):e25555. https://doi.org/10.1002/jia2.25555.CrossRefPubMedPubMedCentral

23.

Sibanda EL, Weller IV, Hakim JG, Cowan FM. The magnitude of loss to follow-up of HIV-exposed infants along the prevention of mother-to-child HIV transmission continuum of care: a systematic review and meta-analysis. AIDS. 2013;27(17):2787–97. https://doi.org/10.1097/QAD.0000000000000027.CrossRefPubMed

24.

Gawde N, Kamble S, Goel N et al. Loss to follow-up of HIV-exposed infants for confirmatory HIV test under Early Infant Diagnosis program in India: analysis of national-level data from reference laboratories. BMC Pediatr. 2022;22(1):602. Published 2022 Oct 18. https://doi.org/10.1186/s12887-022-03656-w.

25.

Finocchario-Kessler S, Gautney BJ, Khamadi S, et al. If you text them, they will come: using the HIV infant tracking system to improve early infant diagnosis quality and retention in Kenya. AIDS. 2014;28(Suppl 3):313–S321. https://doi.org/10.1097/QAD.0000000000000332.CrossRef

26.

Donahue MC, Dube Q, Dow A, Umar E, Van Rie A. They have already thrown away their chicken: barriers affecting participation by HIV-infected women in care and treatment programs for their infants in Blantyre. Malawi AIDS care. 2012;24(10):1233–9. https://doi.org/10.1080/09540121.2012.656570.CrossRefPubMed

27.

Ankrah AK, Dako-Gyeke P. Factors influencing the delivery and uptake of early infant diagnosis of HIV services in Greater Accra, Ghana: a qualitative study. PLoS ONE. 2021;16(2):e0246876. https://doi.org/10.1371/journal.pone.0246876.CrossRefPubMedPubMedCentral

28.

Nuoh RD, Nyarko KM, Noora CL, et al. Barriers to early infant diagnosis of HIV in the Wa Municipality and Lawra District of Upper West Region, Ghana. Ghana Med J. 2020;54(2 Suppl):83–90. https://doi.org/10.4314/gmj.v54i2s.13.CrossRefPubMedPubMedCentral

Title: Caregivers’ experiences of accessing HIV Early Infant Diagnosis (EID) services and its barriers and facilitators, India
Authors: Kalyani Nikhare
Nilesh Gawde
Suchit Kamble
Noopur Goel
Sushmita Kamble
Swapna Pawar
Pratik More
Neha Kapoor
Vinita Verma
Bhawani Singh Kushwaha
Chinmoyee Das
Shobini Rajan
Publication date: 01-12-2024
Publisher: BioMed Central
Keyword: Human Immunodeficiency Virus
Published in: BMC Health Services Research / Issue 1/2024
Electronic ISSN: 1472-6963
DOI: https://doi.org/10.1186/s12913-023-10500-z

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Caregivers’ experiences of accessing HIV Early Infant Diagnosis (EID) services and its barriers and facilitators, India

Abstract

Background

Methods

Results

Discussion

Conclusion

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Discussion

Conclusion

Please log in to get access to this content

Other articles of this Issue 1/2024

Citizens’ perspectives on relocating care: a scoping review

Aligning organisational priorities and implementation science for cancer research

The role of governance in shaping health system reform: a case study of the design and implementation of new health regions in Ireland, 2018–2023

Strategies to improve care for older adults who present to the emergency department: a systematic review

Validation study of the Amharic version Safety Attitudes Questionnaire (SAQ) in public hospitals of Addis Ababa, Ethiopia: a cross-sectional study

Project ECHO®: a global cross-sectional examination of implementation success