Skip to main content
Top
Published in: BMC Public Health 1/2019

Open Access 01-12-2019 | Care | Research article

Why did I stop? And why did I restart? Perspectives of women lost to follow-up in option B+ HIV care in Dar es Salaam, Tanzania

Authors: Adellah Sariah, Joan Rugemalila, Joyce Protas, Eric Aris, Helen Siril, Edith Tarimo, David Urassa

Published in: BMC Public Health | Issue 1/2019

Login to get access

Abstract

Background

Despite an increased uptake of option B+ treatment among HIV- positive pregnant and breastfeeding women, retaining these women in care is still a major challenge. Previous studies have identified factors associated with loss to follow-up (LTFU) in HIV care, however, the perspectives from HIV-positive pregnant and breastfeeding women regarding their LTFU in option B+ needs further exploration. We explored reasons for LTFU and motivation to resume treatment among HIV-positive women initiated in option B+ in an Urban setting.

Methods

A descriptive qualitative study was conducted at three public care and treatment clinics (CTC) (Buguruni health center, Sinza hospital, and Mbagala Rangitatu health center) in Dar es Salaam, Tanzania between February and May 2017. In-depth interviews were conducted with 30 HIV-positive pregnant and breastfeeding women who were lost to follow up in the option B+ regimen. Analysis of data followed content analysis that was performed using NVivo 10 computer-assisted qualitative data analysis software.

Results

Eleven women were lost to follow-up and did not resume Option B+, while 19 had resumed treatment. The study indicated a struggle with long term disease amongst HIV-positive pregnant and breastfeeding women initiated in option B+ treatment. The reported reasons contributing to LTFU among these women appeared in three categories. The contribution of LTFU in the first category namely health-related factors included medication side effects and lack of disease symptoms. The second category highlighted the contribution of psychological factors such as loss of hope, fear of medication side effects and HIV-related stigma. The third category underscored the influence of socio-economic statuses such as financial constraints, lack of partner support, family conflicts, non-disclosure of HIV-positive status, and religious beliefs. Motivators to resume treatment after LTFU included support from health care providers and family members, a desire to protect the unborn child from HIV-infection and a need to maintain a healthy status.

Conclusion

The study has highlighted the reasons for LTFU and motivation to resume treatment among women initiated in Option B+. Our results provide further evidence on the need for future interventions to focus on these factors in order to improve retention in life-long treatment.
Literature
2.
go back to reference World Health Organisation. Programmatic update: use of antiretroviral drugs for treating pregnant women and preventing HIV infection in infants. Geneva: World Health Organisation; 2012. World Health Organisation. Programmatic update: use of antiretroviral drugs for treating pregnant women and preventing HIV infection in infants. Geneva: World Health Organisation; 2012.
3.
go back to reference UNICEF. Options B and B+: Key considerations for countries to implement and equity-focused approach. Eliminating new HIV infections among children and keeping mothers living with HIV alive and well. 2012. UNICEF. Options B and B+: Key considerations for countries to implement and equity-focused approach. Eliminating new HIV infections among children and keeping mothers living with HIV alive and well. 2012.
4.
go back to reference Ngarina M, Tarimo EAM, Naburi H, Kilewo C, Mwanyika-Sando M, Chalamilla G, et al. Women’s preferences regarding infant or maternal antiretroviral prophylaxis for prevention of mother-to-child transmission of HIV during breastfeeding and their views on option B+ in Dar Es Salaam, Tanzania. PLoS One. 2014;9(1):e85310 Thorne C, editor.CrossRef Ngarina M, Tarimo EAM, Naburi H, Kilewo C, Mwanyika-Sando M, Chalamilla G, et al. Women’s preferences regarding infant or maternal antiretroviral prophylaxis for prevention of mother-to-child transmission of HIV during breastfeeding and their views on option B+ in Dar Es Salaam, Tanzania. PLoS One. 2014;9(1):e85310 Thorne C, editor.CrossRef
5.
go back to reference Clouse K, Schwartz S, Rie AV, Bassett J, Yende N, Pettifor A. “What they wanted was to give birth; nothing Else”: barriers to retention in option B+ HIV care among postpartum women in South Africa. J Acquir Immune Defic Syndr. 2014;67(1):7.CrossRef Clouse K, Schwartz S, Rie AV, Bassett J, Yende N, Pettifor A. “What they wanted was to give birth; nothing Else”: barriers to retention in option B+ HIV care among postpartum women in South Africa. J Acquir Immune Defic Syndr. 2014;67(1):7.CrossRef
6.
go back to reference Coutsoudis A, Goga A, Desmond C, Barron P, Black V, Coovadia H. Is option B+ the best choice? Lancet. 2013;381(9863):269–71.CrossRef Coutsoudis A, Goga A, Desmond C, Barron P, Black V, Coovadia H. Is option B+ the best choice? Lancet. 2013;381(9863):269–71.CrossRef
7.
go back to reference Ahmed S, Kim MH, Abrams EJ. Risks and benefits of lifelong antiretroviral treatment for pregnant and breastfeeding women: a review of the evidence for the option B+ approach. Curr Opin HIV AIDS. 2013;8(5):474–89.CrossRef Ahmed S, Kim MH, Abrams EJ. Risks and benefits of lifelong antiretroviral treatment for pregnant and breastfeeding women: a review of the evidence for the option B+ approach. Curr Opin HIV AIDS. 2013;8(5):474–89.CrossRef
8.
go back to reference CDC. Impact of an innovative approach to prevent mother-to-child transmission of HIV — Malawi, July 2011–September 2012. Morb Mortal Wkly Rep. 2013;62:141–56. CDC. Impact of an innovative approach to prevent mother-to-child transmission of HIV — Malawi, July 2011–September 2012. Morb Mortal Wkly Rep. 2013;62:141–56.
9.
go back to reference Kim MH, Ahmed S, Hosseinipour MC, Giordano TP, Chiao EY, Kazembe PN, et al. The impact of option B+ on the antenatal PMTCT Cascade in Lilongwe, Malawi. J Acquir Immune Defic Syndr. 2015;68(5):7.CrossRef Kim MH, Ahmed S, Hosseinipour MC, Giordano TP, Chiao EY, Kazembe PN, et al. The impact of option B+ on the antenatal PMTCT Cascade in Lilongwe, Malawi. J Acquir Immune Defic Syndr. 2015;68(5):7.CrossRef
10.
go back to reference Tweya H, Gugsa S, Hosseinipour M, Speight C, Ng’ambi W, Bokosi M, et al. Understanding factors, outcomes and reasons for loss to follow-up among women in option B+ PMTCT programme in Lilongwe, Malawi. Tropical Med Int Health. 2014;19(11):1360–6.CrossRef Tweya H, Gugsa S, Hosseinipour M, Speight C, Ng’ambi W, Bokosi M, et al. Understanding factors, outcomes and reasons for loss to follow-up among women in option B+ PMTCT programme in Lilongwe, Malawi. Tropical Med Int Health. 2014;19(11):1360–6.CrossRef
11.
go back to reference Kim MH, Ahmed S, Preidis GA, Abrams EJ, Hosseinipour MC, Giordano TP, et al. Low rates of mother-to-child HIV transmission in a routine programmatic setting in Lilongwe, Malawi. PLoS One. 2013;8(5):e64979 Jhaveri R, editor.CrossRef Kim MH, Ahmed S, Preidis GA, Abrams EJ, Hosseinipour MC, Giordano TP, et al. Low rates of mother-to-child HIV transmission in a routine programmatic setting in Lilongwe, Malawi. PLoS One. 2013;8(5):e64979 Jhaveri R, editor.CrossRef
12.
go back to reference Gourlay A, Birdthistle I, Mburu G, Iorpenda K, Wringe A. Barriers and facilitating factors to the uptake of antiretroviral drugs for prevention of mother-to-child transmission of HIV in sub-Saharan Africa: a systematic review. J Int AIDS Soc. 2013;16(1):18588.CrossRef Gourlay A, Birdthistle I, Mburu G, Iorpenda K, Wringe A. Barriers and facilitating factors to the uptake of antiretroviral drugs for prevention of mother-to-child transmission of HIV in sub-Saharan Africa: a systematic review. J Int AIDS Soc. 2013;16(1):18588.CrossRef
13.
go back to reference Keehn E, Karfakis J. Current practices to improve uptake, retention, and adherence for option B+ in Malawi; 2014. Keehn E, Karfakis J. Current practices to improve uptake, retention, and adherence for option B+ in Malawi; 2014.
14.
go back to reference Ministry of Health and Social Welfare (MoHSW). National HIV and AIDS Response Report 2013 Tanzania Mainland. Dar es Salaam: Prime Minister’s Office; 2014. Ministry of Health and Social Welfare (MoHSW). National HIV and AIDS Response Report 2013 Tanzania Mainland. Dar es Salaam: Prime Minister’s Office; 2014.
15.
go back to reference Chi BH, Yiannoutsos CT, Westfall AO, Newman JE, Zhou J, Cesar C, et al. Universal definition of loss to follow-up in HIV treatment programs: a statistical analysis of 111 facilities in Africa, Asia, and Latin America. PLoS Med. 2011;8(10):e1001111 Bartlett J, editor.CrossRef Chi BH, Yiannoutsos CT, Westfall AO, Newman JE, Zhou J, Cesar C, et al. Universal definition of loss to follow-up in HIV treatment programs: a statistical analysis of 111 facilities in Africa, Asia, and Latin America. PLoS Med. 2011;8(10):e1001111 Bartlett J, editor.CrossRef
16.
go back to reference Musmade P, Nijhawan L, Udupa N, Bairy K, Bhat K, Janodia M, et al. Informed consent: issues and challenges. J Adv Pharm Technol Res. 2013;4(3):134.CrossRef Musmade P, Nijhawan L, Udupa N, Bairy K, Bhat K, Janodia M, et al. Informed consent: issues and challenges. J Adv Pharm Technol Res. 2013;4(3):134.CrossRef
17.
go back to reference Boyce C, Neale P. Conducting In-depth interviews. 2006;16. Boyce C, Neale P. Conducting In-depth interviews. 2006;16.
18.
go back to reference Moser A, Korstjens I. Series: practical guidance to qualitative research. Part 3: sampling, data collection, and analysis. Eur J Gen Pract. 2018;24(1):9–18.CrossRef Moser A, Korstjens I. Series: practical guidance to qualitative research. Part 3: sampling, data collection, and analysis. Eur J Gen Pract. 2018;24(1):9–18.CrossRef
19.
go back to reference Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures, and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–12.CrossRef Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures, and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–12.CrossRef
20.
go back to reference Kim MH, Zhou A, Mazenga A, Ahmed S, Markham C, Zomba G, et al. Why did I stop? Barriers and facilitators to uptake and adherence to ART in option B+ HIV Care in Lilongwe, Malawi. PLoS One. 2016;11(2):e0149527 Ferrand RA editor.CrossRef Kim MH, Zhou A, Mazenga A, Ahmed S, Markham C, Zomba G, et al. Why did I stop? Barriers and facilitators to uptake and adherence to ART in option B+ HIV Care in Lilongwe, Malawi. PLoS One. 2016;11(2):e0149527 Ferrand RA editor.CrossRef
21.
go back to reference Kuznetsova AV, Meylakhs AY, Amirkhanian YA, Kelly JA, Yakovlev AA, Musatov VB, et al. Barriers and facilitators of HIV care engagement: results of a qualitative study in St. Petersburg, Russia. AIDS Behav. 2016;20(10):2433–43.CrossRef Kuznetsova AV, Meylakhs AY, Amirkhanian YA, Kelly JA, Yakovlev AA, Musatov VB, et al. Barriers and facilitators of HIV care engagement: results of a qualitative study in St. Petersburg, Russia. AIDS Behav. 2016;20(10):2433–43.CrossRef
22.
go back to reference Iroezi N, Mindry D, Kawale P, Chikowi G, Jansen P. A qualitative analysis of the barriers and facilitators to receiving care in a prevention of mother-to-child program in Nkhoma, Malawi. 2015;14. Iroezi N, Mindry D, Kawale P, Chikowi G, Jansen P. A qualitative analysis of the barriers and facilitators to receiving care in a prevention of mother-to-child program in Nkhoma, Malawi. 2015;14.
23.
go back to reference Tsega B, Srikanth A, Shewamene Z. Determinants of non-adherence to antiretroviral therapy in adult hospitalized patients, Northwest Ethiopia. Patient Prefer Adherence. 2015;373:373-80. Tsega B, Srikanth A, Shewamene Z. Determinants of non-adherence to antiretroviral therapy in adult hospitalized patients, Northwest Ethiopia. Patient Prefer Adherence. 2015;373:373-80.
24.
go back to reference Siril H, Fawzi MCS, Todd J, Wyatt M, Kilewo J, Ware N, et al. Hopefulness fosters affective and cognitive constructs for actions to cope and enhance quality of life among people living with HIV in Dar Es Salaam, Tanzania. J Int Assoc Provid AIDS Care. 2017;16(2):140–8.CrossRef Siril H, Fawzi MCS, Todd J, Wyatt M, Kilewo J, Ware N, et al. Hopefulness fosters affective and cognitive constructs for actions to cope and enhance quality of life among people living with HIV in Dar Es Salaam, Tanzania. J Int Assoc Provid AIDS Care. 2017;16(2):140–8.CrossRef
26.
go back to reference Clouse K, Schwartz S, Van Rie A, Bassett J, Yende N, Pettifor A. “What they wanted was to give birth; nothing else”: barriers to retention in option B+ HIV care among postpartum women in South Africa. J Acquir Immune Defic Syndr. 2014;67(1):e12–8.CrossRef Clouse K, Schwartz S, Van Rie A, Bassett J, Yende N, Pettifor A. “What they wanted was to give birth; nothing else”: barriers to retention in option B+ HIV care among postpartum women in South Africa. J Acquir Immune Defic Syndr. 2014;67(1):e12–8.CrossRef
27.
go back to reference Hodgson I, Plummer ML, Konopka SN, Colvin CJ, Jonas E, Albertini J, et al. A systematic review of individual and contextual factors affecting ART initiation, adherence, and retention for HIV-infected pregnant and postpartum women. Newell M-L. PLoS One. 2014;9(11):e111421.CrossRef Hodgson I, Plummer ML, Konopka SN, Colvin CJ, Jonas E, Albertini J, et al. A systematic review of individual and contextual factors affecting ART initiation, adherence, and retention for HIV-infected pregnant and postpartum women. Newell M-L. PLoS One. 2014;9(11):e111421.CrossRef
28.
go back to reference Webb R, Cullel M. Understanding the perspectives and/or experiences of women living with HIV regarding option B+ in Uganda and Malawi: GNP+, ICRW, ICW-EA, COWLHA; 2013. Webb R, Cullel M. Understanding the perspectives and/or experiences of women living with HIV regarding option B+ in Uganda and Malawi: GNP+, ICRW, ICW-EA, COWLHA; 2013.
29.
go back to reference Flax VL, Hamela G, Mofolo I, Hosseinipour MC, Hoffman IF, Maman S. Factors influencing postnatal option B+ participation and breastfeeding duration among HIV-positive women in Lilongwe District, Malawi: a qualitative study. PLoS One. 2017;12(4):e0175590 Blackard J, editor.CrossRef Flax VL, Hamela G, Mofolo I, Hosseinipour MC, Hoffman IF, Maman S. Factors influencing postnatal option B+ participation and breastfeeding duration among HIV-positive women in Lilongwe District, Malawi: a qualitative study. PLoS One. 2017;12(4):e0175590 Blackard J, editor.CrossRef
30.
go back to reference Gugsa S, Potter K, Tweya H, Phiri S, Sande O, Sikwese P, et al. Exploring factors associated with ART adherence and retention in care under option B+ strategy in Malawi: a qualitative study. PLoS One. 2017;12(6):e0179838 Okulicz JF, editor.CrossRef Gugsa S, Potter K, Tweya H, Phiri S, Sande O, Sikwese P, et al. Exploring factors associated with ART adherence and retention in care under option B+ strategy in Malawi: a qualitative study. PLoS One. 2017;12(6):e0179838 Okulicz JF, editor.CrossRef
31.
go back to reference Kagimu M, Guwatudde D, Rwabukwali C, Kaye S, Walakira Y, Ainomugisha D. Religiosity for promotion of behaviors likely to reduce new HIV infections in Uganda: a study among Muslim youth in Wakiso District. J Relig Health. 2013;52(4):1211–27.CrossRef Kagimu M, Guwatudde D, Rwabukwali C, Kaye S, Walakira Y, Ainomugisha D. Religiosity for promotion of behaviors likely to reduce new HIV infections in Uganda: a study among Muslim youth in Wakiso District. J Relig Health. 2013;52(4):1211–27.CrossRef
32.
go back to reference Pecoraro A, Mimiaga MJ, O’Cleirigh C, Safren SA, Blokhina E, Verbitskaya E, et al. Lost-to-care and engaged-in-care HIV patients in Leningrad oblast, Russian Federation: barriers and facilitators to medical visit retention. AIDS Care. 2014;26(10):1249–57.CrossRef Pecoraro A, Mimiaga MJ, O’Cleirigh C, Safren SA, Blokhina E, Verbitskaya E, et al. Lost-to-care and engaged-in-care HIV patients in Leningrad oblast, Russian Federation: barriers and facilitators to medical visit retention. AIDS Care. 2014;26(10):1249–57.CrossRef
33.
go back to reference Pecoraro A, Pacciolla A, O’Cleirigh C, Mimiaga M, Kwiatek P, Blokhina E, et al. Proactive coping and spirituality among patients who left or remained in antiretroviral treatment in St Petersburg, Russian Federation. AIDS Care. 2016;28(3):334–8.CrossRef Pecoraro A, Pacciolla A, O’Cleirigh C, Mimiaga M, Kwiatek P, Blokhina E, et al. Proactive coping and spirituality among patients who left or remained in antiretroviral treatment in St Petersburg, Russian Federation. AIDS Care. 2016;28(3):334–8.CrossRef
34.
go back to reference Medved Kendrick H. Are religion and spirituality barriers or facilitators to treatment for HIV: a systematic review of the literature. AIDS Care. 2017;29(1):1–13.CrossRef Medved Kendrick H. Are religion and spirituality barriers or facilitators to treatment for HIV: a systematic review of the literature. AIDS Care. 2017;29(1):1–13.CrossRef
35.
go back to reference Buregyeya E, Naigino R, Mukose A, Makumbi F, Esiru G, Arinaitwe J, et al. Facilitators and barriers to uptake and adherence to lifelong antiretroviral therapy among HIV infected pregnant women in Uganda: a qualitative study. BMC Pregnancy Childbirth. 2017;17(1):94.CrossRef Buregyeya E, Naigino R, Mukose A, Makumbi F, Esiru G, Arinaitwe J, et al. Facilitators and barriers to uptake and adherence to lifelong antiretroviral therapy among HIV infected pregnant women in Uganda: a qualitative study. BMC Pregnancy Childbirth. 2017;17(1):94.CrossRef
36.
go back to reference McLean E, Renju J, Wamoyi J, Bukenya D, Ddaaki W, Church K, et al. ‘I wanted to safeguard the baby’: a qualitative study to understand the experiences of option B+ for pregnant women and the potential implications for ‘test-and-treat’ in four sub-Saharan African settings. Sex Transm Infect. 2017;93(Suppl 3):e052972.CrossRef McLean E, Renju J, Wamoyi J, Bukenya D, Ddaaki W, Church K, et al. ‘I wanted to safeguard the baby’: a qualitative study to understand the experiences of option B+ for pregnant women and the potential implications for ‘test-and-treat’ in four sub-Saharan African settings. Sex Transm Infect. 2017;93(Suppl 3):e052972.CrossRef
37.
go back to reference Elwell K. Facilitators and barriers to treatment adherence within PMTCT programs in Malawi. AIDS Care. 2016;28(8):971–5.CrossRef Elwell K. Facilitators and barriers to treatment adherence within PMTCT programs in Malawi. AIDS Care. 2016;28(8):971–5.CrossRef
Metadata
Title
Why did I stop? And why did I restart? Perspectives of women lost to follow-up in option B+ HIV care in Dar es Salaam, Tanzania
Authors
Adellah Sariah
Joan Rugemalila
Joyce Protas
Eric Aris
Helen Siril
Edith Tarimo
David Urassa
Publication date
01-12-2019
Publisher
BioMed Central
Published in
BMC Public Health / Issue 1/2019
Electronic ISSN: 1471-2458
DOI
https://doi.org/10.1186/s12889-019-7518-2

Other articles of this Issue 1/2019

BMC Public Health 1/2019 Go to the issue