Skip to main content
Top
Published in: BMC Health Services Research 1/2020

Open Access 01-12-2020 | Care | Research article

‘There are no more secrets’: acceptability of a family-centered model of care for HIV positive children in Eswatini

Authors: Philisiwe N. Khumalo, Leila Katirayi, Kim Ashburn, Caspian Chouraya, Lydia Mpango, Nobuhle Mthethwa, Lynne M. Mofenson

Published in: BMC Health Services Research | Issue 1/2020

Login to get access

Abstract

Background

HIV-positive children have lagged adults on retention in HIV care and viral suppression. To address this gap, Eswatini’s Ministry of Health started a pilot family-centered HIV care model (FCCM) targeting HIV-positive children under 20 years old and their families.

Methods

We conducted semi-structured in-depth interviews with 25 caregivers and 17 healthcare workers (HCWs) to assess acceptability of FCCM in four pilot FCCM health facilities in Hhohho region of Eswatini. Thematic analysis with inductive and deductive codes was used to identify salient themes.

Results

Caregivers and HCWs reported FCCM benefits including strengthening the family bond, encouragement for family members to disclose their HIV status and supporting each other in taking antiretroviral drugs. Caregivers reported that they spent fewer days in clinic, experienced shorter waiting times, and received better counseling services in FCCM compared to the standard-of-care services. FCCM implementation challenges included difficulty for families to attend clinic visits together (e.g., due to scheduling conflicts with weekend Teen Support Club meetings and weekday FCCM appointments). Both HCWs and caregivers mentioned difficulty in sharing sensitive health information in the presence of other family members. HCWs also had challenges with supporting caregivers to disclose HIV status to children and managing the larger group during clinic visits.

Conclusions

FCCM for HIV-positive children was acceptable to both caregivers and HCWs, and they supported scaling-up FCCM implementation nationally. However, special considerations should be made to address the challenges experienced by participants in attending clinic visits together as a family in order to achieve the full benefits of FCCM for HIV positive children.
Appendix
Available only for authorised users
Literature
1.
go back to reference Joint United Nations Programme on HIV/AIDS (UNAIDS). Start Free, Stay Free, AIDS Free 2019 Report. Geneva: Joint United Nations Programme on HIV/AIDS (UNAIDS); 2019. Joint United Nations Programme on HIV/AIDS (UNAIDS). Start Free, Stay Free, AIDS Free 2019 Report. Geneva: Joint United Nations Programme on HIV/AIDS (UNAIDS); 2019.
2.
go back to reference The Government of the Kingdom of Eswatini. Swaziland HIV incidence measurement survey 2 (SHIMS2) 2016–2017 final report. Mbabane: The Government of the Kingdom of Eswatini; 2019. The Government of the Kingdom of Eswatini. Swaziland HIV incidence measurement survey 2 (SHIMS2) 2016–2017 final report. Mbabane: The Government of the Kingdom of Eswatini; 2019.
3.
go back to reference The Government of the Kingdom of Eswatini. HIV annual program report 2018. Mbabane: The Government of the Kingdom of Eswatini; 2018. The Government of the Kingdom of Eswatini. HIV annual program report 2018. Mbabane: The Government of the Kingdom of Eswatini; 2018.
4.
go back to reference Nasuuna E, Kigozi J, Babirye L, Muganzi A, Sewankambo NK, Nakanjako D. Low HIV viral suppression rates following the intensive adherence counseling (IAC) program for children and adolescents with viral failure in public health facilities in Uganda. BMC Public Health. 2018;18(1):1048.PubMedPubMedCentralCrossRef Nasuuna E, Kigozi J, Babirye L, Muganzi A, Sewankambo NK, Nakanjako D. Low HIV viral suppression rates following the intensive adherence counseling (IAC) program for children and adolescents with viral failure in public health facilities in Uganda. BMC Public Health. 2018;18(1):1048.PubMedPubMedCentralCrossRef
5.
go back to reference Betancourt TS, Abrams EJ, McBain R, Fawzi MC. Family-centred approaches to the prevention of mother to child transmission of HIV. J Int AIDS Soc. 2010;13(Suppl 2):S2.PubMedPubMedCentralCrossRef Betancourt TS, Abrams EJ, McBain R, Fawzi MC. Family-centred approaches to the prevention of mother to child transmission of HIV. J Int AIDS Soc. 2010;13(Suppl 2):S2.PubMedPubMedCentralCrossRef
6.
go back to reference Grimsrud A, Bygrave H, Wilkinson L. The case for family-centered differentiated service delivery for HIV. J Acquir Immune Defic Syndr. 2018;78(Suppl 2):S124–S7.PubMedCrossRef Grimsrud A, Bygrave H, Wilkinson L. The case for family-centered differentiated service delivery for HIV. J Acquir Immune Defic Syndr. 2018;78(Suppl 2):S124–S7.PubMedCrossRef
7.
go back to reference Luyirika E, Towle MS, Achan J, Muhangi J, Senyimba C, Lule F, et al. Scaling up paediatric HIV care with an integrated, family-centred approach: an observational case study from Uganda. PLoS One. 2013;8(8):e69548.PubMedPubMedCentralCrossRef Luyirika E, Towle MS, Achan J, Muhangi J, Senyimba C, Lule F, et al. Scaling up paediatric HIV care with an integrated, family-centred approach: an observational case study from Uganda. PLoS One. 2013;8(8):e69548.PubMedPubMedCentralCrossRef
8.
go back to reference Leeper SC, Montague BT, Friedman JF, Flanigan TP. Lessons learned from family-centred models of treatment for children living with HIV: current approaches and future directions. J Int AIDS Soc. 2010;13(Suppl 2):S3.PubMedPubMedCentralCrossRef Leeper SC, Montague BT, Friedman JF, Flanigan TP. Lessons learned from family-centred models of treatment for children living with HIV: current approaches and future directions. J Int AIDS Soc. 2010;13(Suppl 2):S3.PubMedPubMedCentralCrossRef
9.
go back to reference Graves JC, Elyanu P, Schellack CJ, Asire B, Prust ML, Prescott MR, et al. Impact of a family clinic day intervention on paediatric and adolescent appointment adherence and retention in antiretroviral therapy: a cluster randomized controlled trial in Uganda. PLoS One. 2018;13(3):e0192068.PubMedPubMedCentralCrossRef Graves JC, Elyanu P, Schellack CJ, Asire B, Prust ML, Prescott MR, et al. Impact of a family clinic day intervention on paediatric and adolescent appointment adherence and retention in antiretroviral therapy: a cluster randomized controlled trial in Uganda. PLoS One. 2018;13(3):e0192068.PubMedPubMedCentralCrossRef
10.
go back to reference Tonwe-Gold B, Ekouevi DK, Bosse CA, Toure S, Kone M, Becquet R, et al. Implementing family-focused HIV care and treatment: the first 2 years’ experience of the mother-to-child transmission-plus program in Abidjan, cote d’Ivoire. Trop Med Int Health. 2009;14(2):204–12.PubMedPubMedCentralCrossRef Tonwe-Gold B, Ekouevi DK, Bosse CA, Toure S, Kone M, Becquet R, et al. Implementing family-focused HIV care and treatment: the first 2 years’ experience of the mother-to-child transmission-plus program in Abidjan, cote d’Ivoire. Trop Med Int Health. 2009;14(2):204–12.PubMedPubMedCentralCrossRef
11.
go back to reference Hosegood V, Madhavan S. Data availability on men’s involvement in families in sub-Saharan Africa to inform family-centred programmes for children affected by HIV and AIDS. J Int AIDS Soc. 2010;13(Suppl 2):S5.PubMedPubMedCentralCrossRef Hosegood V, Madhavan S. Data availability on men’s involvement in families in sub-Saharan Africa to inform family-centred programmes for children affected by HIV and AIDS. J Int AIDS Soc. 2010;13(Suppl 2):S5.PubMedPubMedCentralCrossRef
12.
go back to reference Guest G, Bunce A, Johnson L. How many interviews are enough?:an experiment with data saturation and variability. Field Methods. 2006;18(1):59–82.CrossRef Guest G, Bunce A, Johnson L. How many interviews are enough?:an experiment with data saturation and variability. Field Methods. 2006;18(1):59–82.CrossRef
13.
go back to reference Yakubu K, Malan Z, Colon-Gonzalez MC, Mash B. Perceptions about family-centred care among adult patients with chronic diseases at a general outpatient clinic in Nigeria. Afr J Primary Health Care Family Med. 2018;10(1):e1–e11. Yakubu K, Malan Z, Colon-Gonzalez MC, Mash B. Perceptions about family-centred care among adult patients with chronic diseases at a general outpatient clinic in Nigeria. Afr J Primary Health Care Family Med. 2018;10(1):e1–e11.
14.
go back to reference Rochat TJ, Bland R, Coovadia H, Stein A, Newell ML. Towards a family-centered approach to HIV treatment and care for HIV-exposed children, their mothers and their families in poorly resourced settings. Futur Virol. 2011;6(6):687–96.CrossRef Rochat TJ, Bland R, Coovadia H, Stein A, Newell ML. Towards a family-centered approach to HIV treatment and care for HIV-exposed children, their mothers and their families in poorly resourced settings. Futur Virol. 2011;6(6):687–96.CrossRef
15.
go back to reference Mutambo C, Shumba K, Hlongwana KW. Child-Centred care in HIV service provision for children in resource constrained settings: a narrative review of literature. AIDS Res Treatment. 2019;2019:5139486. Mutambo C, Shumba K, Hlongwana KW. Child-Centred care in HIV service provision for children in resource constrained settings: a narrative review of literature. AIDS Res Treatment. 2019;2019:5139486.
16.
go back to reference Jantarapakde J, Pancharoen C, Teeratakulpisarn S, Mathajittiphan P, Kriengsinyot R, Channgam T, et al. An integrated approach to HIV disclosure for HIV-affected families in Thailand. J Int Assoc Providers AIDS Care. 2019;18:2325958219831021. Jantarapakde J, Pancharoen C, Teeratakulpisarn S, Mathajittiphan P, Kriengsinyot R, Channgam T, et al. An integrated approach to HIV disclosure for HIV-affected families in Thailand. J Int Assoc Providers AIDS Care. 2019;18:2325958219831021.
17.
go back to reference Maman S, van Rooyen H, Groves AK. HIV status disclosure to families for social support in South Africa (NIMH project accept/HPTN 043). AIDS Care. 2014;26(2):226–32.PubMedCrossRef Maman S, van Rooyen H, Groves AK. HIV status disclosure to families for social support in South Africa (NIMH project accept/HPTN 043). AIDS Care. 2014;26(2):226–32.PubMedCrossRef
18.
go back to reference Odiachi A. The impact of disclosure on health and related outcomes in human immunodeficiency virus-infected children: a literature review. Front Public Health. 2017;5:231.PubMedPubMedCentralCrossRef Odiachi A. The impact of disclosure on health and related outcomes in human immunodeficiency virus-infected children: a literature review. Front Public Health. 2017;5:231.PubMedPubMedCentralCrossRef
19.
go back to reference Sariah A, Rugemalila J, Somba M, Minja A, Makuchilo M, Tarimo E, et al. “Experiences with disclosure of HIV-positive status to the infected child”: Perspectives of healthcare providers in Dar es Salaam, Tanzania. BMC Public Health. 2016;16(1):1083.PubMedPubMedCentralCrossRef Sariah A, Rugemalila J, Somba M, Minja A, Makuchilo M, Tarimo E, et al. “Experiences with disclosure of HIV-positive status to the infected child”: Perspectives of healthcare providers in Dar es Salaam, Tanzania. BMC Public Health. 2016;16(1):1083.PubMedPubMedCentralCrossRef
20.
go back to reference Kalembo FW, Kendall GE, Ali M, Chimwaza AF. Healthcare workers’ perspectives and practices regarding the disclosure of HIV status to children in Malawi: a cross-sectional study. BMC Health Serv Res. 2018;18(1):540.PubMedPubMedCentralCrossRef Kalembo FW, Kendall GE, Ali M, Chimwaza AF. Healthcare workers’ perspectives and practices regarding the disclosure of HIV status to children in Malawi: a cross-sectional study. BMC Health Serv Res. 2018;18(1):540.PubMedPubMedCentralCrossRef
21.
go back to reference Kallem S, Renner L, Ghebremichael M, Paintsil E. Prevalence and pattern of disclosure of HIV status in HIV-infected children in Ghana. AIDS Behav. 2011;15(6):1121–7.PubMedPubMedCentralCrossRef Kallem S, Renner L, Ghebremichael M, Paintsil E. Prevalence and pattern of disclosure of HIV status in HIV-infected children in Ghana. AIDS Behav. 2011;15(6):1121–7.PubMedPubMedCentralCrossRef
22.
go back to reference Jemmott JB 3rd, Heeren GA, Sidloyi L, Marange CS, Tyler JC, Ngwane Z. Caregivers’ intentions to disclose HIV diagnosis to children living with HIV in South Africa: a theory-based approach. AIDS Behav. 2014;18(6):1027–36.PubMedPubMedCentralCrossRef Jemmott JB 3rd, Heeren GA, Sidloyi L, Marange CS, Tyler JC, Ngwane Z. Caregivers’ intentions to disclose HIV diagnosis to children living with HIV in South Africa: a theory-based approach. AIDS Behav. 2014;18(6):1027–36.PubMedPubMedCentralCrossRef
23.
go back to reference Heeren GA, Jemmott JB 3rd, Sidloyi L, Ngwane Z. Disclosure of HIV diagnosis to HIV-infected children in South Africa: focus groups for intervention development. Vulnerable Children Youth Studies. 2012;7(1):47–54.PubMedCrossRef Heeren GA, Jemmott JB 3rd, Sidloyi L, Ngwane Z. Disclosure of HIV diagnosis to HIV-infected children in South Africa: focus groups for intervention development. Vulnerable Children Youth Studies. 2012;7(1):47–54.PubMedCrossRef
24.
go back to reference Gachanja G, Burkholder GJ, Ferraro A. HIV-positive parents’ accounts on disclosure preparation activities in Kenya. J Soc Behav Health Sci. 2014;1(1):18–37. Gachanja G, Burkholder GJ, Ferraro A. HIV-positive parents’ accounts on disclosure preparation activities in Kenya. J Soc Behav Health Sci. 2014;1(1):18–37.
25.
go back to reference Dlamini CP. Disclosure of HIV status to infected children in Swaziland [masters]. Pretoria: University of South Africa; 2016. Dlamini CP. Disclosure of HIV status to infected children in Swaziland [masters]. Pretoria: University of South Africa; 2016.
26.
go back to reference Moradian ST. Family-centered care: an evolutionary concept analysis. Int J Med Rev. 2018;5(2):82–6.CrossRef Moradian ST. Family-centered care: an evolutionary concept analysis. Int J Med Rev. 2018;5(2):82–6.CrossRef
27.
28.
go back to reference The Government of the Kingdom of Eswatini. 2018 Integrated HIV Management Guidelines. Mbabane: The Government of the Kingdom of Eswatini; 2018. The Government of the Kingdom of Eswatini. 2018 Integrated HIV Management Guidelines. Mbabane: The Government of the Kingdom of Eswatini; 2018.
29.
go back to reference Achema G, Ncama BP. Exploring family-centered care for children living with HIV and AIDS in Nigeria. Japan J Nurs Sci. 2016;13(2):256–64.CrossRef Achema G, Ncama BP. Exploring family-centered care for children living with HIV and AIDS in Nigeria. Japan J Nurs Sci. 2016;13(2):256–64.CrossRef
Metadata
Title
‘There are no more secrets’: acceptability of a family-centered model of care for HIV positive children in Eswatini
Authors
Philisiwe N. Khumalo
Leila Katirayi
Kim Ashburn
Caspian Chouraya
Lydia Mpango
Nobuhle Mthethwa
Lynne M. Mofenson
Publication date
01-12-2020
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2020
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-020-05810-5

Other articles of this Issue 1/2020

BMC Health Services Research 1/2020 Go to the issue