“I just wish that everything is in one place”: facilitators and barriers to continuity of care among HIV-positive, postpartum women with a non-communicable disease in South Africa

Abstract

HIV and non-communicable diseases (NCD) are co-epidemics in South Africa. Comorbid individuals must engage in lifelong care. Postpartum HIV-positive women in South Africa are at high risk of dropping out of HIV care. We explored healthcare utilization among postpartum women requiring chronic management of HIV and NCD. From August - December 2016, we enrolled 25 women in Soweto, South Africa, and conducted one-time interviews. All participants were adult (≥18 years), HIV-positive, postpartum, and diagnosed with a NCD that required further evaluation after delivery. We developed a conceptual model that describes how maternal factors, interaction with environments, and social networks influence follow up engagement. Barriers to follow-up included separate visit days, increased time commitment, transportation and logistics, unfamiliar clinic environments, and disrespectful staff. Factors facilitating patient engagement included social support and partner disclosure. Women were more likely to turn to friends and family for advice regarding HIV or the NCD, rather than a clinic. Women prioritized infant care after delivery, suggesting that baby care may be an entry point for improving maternal care after delivery. Our results support advocating for better integration of services at the primary care level as a method to improve continuity of care for both women and children.

How women's experiences and perceptions of care influence uptake of postnatal care across sub-Saharan Africa: a qualitative systematic review

“…Two studies were conducted in urban settings [ 37 , 39 ]; nine in rural settings [ 36 , 38 , 40 – 46 ]; and four studies were in both urban and rural settings [ 47 – 50 ]. Interviews were conducted with women in a variety of settings: their homes [ 40 , 49 ], community centre [ 40 ], 'private locations' [ 41 , 43 , 47 , 48 , 50 ], rural healthcare centre [ 36 ], village based informant’s house [ 42 ], maternity unit at hospital [ 37 ], research site [ 49 ], at the bedside in the postnatal ward [ 49 ] and in some studies the interview site was unclear [ 38 , 39 , 41 , 44 , 46 ].…”

“…– [ 50 ] “…one would never go wrong with the midwives if they came for their check-ups well groomed” – [ 36 ] Non-dignified and disrespectful care Negative attitude of health care providers [ 36 , 42 , 43 , 49 ] "When we go late to the clinic for postnatal care, the healthcare providers complain that they are getting a meagre salary and yet we keep bothering them" – [ 42 ] “Attitude, the way sometimes patients get treated, it’s not OK for me…sometimes you find that people are afraid to ask certain things because you find that health workers can’t be approached …it’s not OK the way that they deal with patients. I am not happy.”—[ 39 ] Power imbalance [ 36 – 38 , 45 ] “Some of the midwives are not approachable. If you try to exercise your rights it appears as if you are going too forward ahead of the midwives” – [ 36 ] Hostile environment [[ 36 , 38 ]] “Many pregnant mothers are waiting.…”

“…Like if you were to continue staying you would bring trouble for others… and the nurses tell us, ‘Now the time has come. You should go so that others can come.’” – [ 38 ] Abuse Physical abuse [ 39 , 43 , 45 – 47 ] “No we did not go to the hospital [for postnatal care] because if they notice that you delivered from the village … her [the nurse] can easily beat you. So it is better I go to the old lady in the village because I know she will treat me well.” – [ 45 ] Denial of care Denial of postnatal care after delivering [ 38 , 40 , 42 , 45 , 47 ] “Stay longer … if you have delivered safely you can’t stay.…”

“…I said let me take her to the facility, maybe I would be helped. They told me the medicine is not there for me [because I had delivered at home].” – [ 45 ] “If you go to the clinic after giving birth at home, nurses make you pay before they examine your baby” – [ 47 ] “I didn’t go [for postnatal care] because I didn’t have ZMW51 to pay for the card.”- [ 45 ] Lack of informed care [ 36 , 38 , 39 , 42 , 43 , 45 , 49 ] “I do not have much understanding of the programme [maternal health services]. I am a first-time mother, so I don't know about many things.…”

What will it really take to end the HIV epidemic?

“…Firstly, barriers to care and retention in care are a key consideration in the selected papers. Clouse et al (2018) explore the question of co-morbid epidemics of HIV and non-communicable diseases in South Africa. Working with a sample of postpartum women requiring chronic management of HIV and NCD, these authors found that access barriers and disrespectful treatment by staff hindered their engagement in follow up treatment, while social support and partner disclosure facilitated further engagement in care.…”