• Users Online: 105
  • Print this page
  • Email this page


 
 Table of Contents  
ORIGINAL ARTICLE
Year : 2021  |  Volume : 30  |  Issue : 5  |  Page : 601-606

Disclosure of human immune deficiency virus status to infected children at a tertiary hospital in North-western Nigeria


1 Department of Community Medicine, Kaduna State University, Kaduna State, Nigeria
2 Department of Paediatrics, Federal Medical Center, Katsina, Nigeria

Date of Submission08-Jul-2021
Date of Decision06-Aug-2021
Date of Acceptance28-Aug-2021
Date of Web Publication11-Oct-2021

Correspondence Address:
Dr. Bilkisu Nwankwo
Department of Community Medicine, College of Medicine, Kaduna State University, Kaduna State
Nigeria
Login to access the Email id

Source of Support: None, Conflict of Interest: None


DOI: 10.4103/NJM.NJM_119_21

Rights and Permissions
  Abstract 


Background: With the advent of highly active anti-retroviral therapy, human immunodeficiency virus (HIV)-infected children are surviving into adolescence and adulthood. Disclosure of HIV-positive status is important for the life-long management of HIV. However, disclosing HIV-positive status is a challenging task due to the associated blame, shame, and potential stigma. Aim: The aim of this study is to assess the prevalence of disclosure to HIV-infected children and associated factors in a tertiary hospital in North-west Nigeria. Materials and Methods: A descriptive, cross-sectional study was carried out. Fifty-two parents/caregivers were interviewed using a pretested interviewer-administered questionnaire. The questionnaire had three sections: sociodemographic characteristics of caregivers, child's profile, and determinants of disclosure of HIV status. Data were collected and analyzed using the Statistical Package for the Social Sciences (SPSS) software version 21, and results were presented using the tables. The Chi-square test was used to test for the association. Fisher's exact test was used where conditions for the Chi-square test were not met. P < 0.05 was statistically significant. Results: The prevalence of disclosure of HIV-positive status to HIV-infected children was 32.7%. Children's age (P = 0.003) and their level of education (P = <0.001) had significant associations with the disclosure. The most common (9, 52.9%) reason given for disclosure was persistent questioning of caregivers about reasons for taking medication despite not being ill. Conclusion: The prevalence of HIV status disclosure to HIV-positive children was low in this study. Health-care workers can provide support to encourage and better prepare parents/caregivers for the process of disclosure.

Keywords: Child health, highly active anti-retroviral therapy, human immunodeficiency virus, human immunodeficiency virus status


How to cite this article:
Nwankwo B, Oluchukwu JA, Usman NO. Disclosure of human immune deficiency virus status to infected children at a tertiary hospital in North-western Nigeria. Niger J Med 2021;30:601-6

How to cite this URL:
Nwankwo B, Oluchukwu JA, Usman NO. Disclosure of human immune deficiency virus status to infected children at a tertiary hospital in North-western Nigeria. Niger J Med [serial online] 2021 [cited 2021 Dec 8];30:601-6. Available from: http://www.njmonline.org/text.asp?2021/30/5/601/327948




  Introduction Top


The availability of highly active anti-retroviral therapy (HAART) has improved both the quality of life and the life expectancy of human immunodeficiency virus (HIV)-infected children. Most children are now living longer and surviving into adolescence and adulthood than they were previously. This success has posed a new challenge to children, parents/caregivers, and health-care providers.[1] Infected children should be able to cope with the psychological, biological, and social challenges of life. They also have to deal with the difficulty of adhering to what is likely to be a life-long therapy.[1] As these HIV-positive children reach adolescence and adulthood, they must deal with the issues of sexuality and reproduction while also dealing with their HIV infection. These children's most pressing need is to recognize and grasp the nature of their illness and to achieve this, their HIV-positive status has to be disclosed to them.[1]

Since the beginning of the HIV epidemic, almost 80 million people have been infected with the virus, with around 36 million deaths. At the end of 2020, 37.7 million individuals worldwide were living with HIV, with 1.7 million of them being children.[2] Even though other modes of HIV transmission exist, more than 90% of infected children acquired it from their mothers during pregnancy, labor, or delivery.[3] In the 21 priority nations in sub-Saharan Africa, Nigeria accounts for one-third of all new HIV infections among children. This is the highest number of any country.[4]

The disclosure of HIV-positive status to infected children is one of the most difficult tasks confronting caregivers and health-care workers.[1],[5] HIV child disclosure is defined as a state in which a child knows his/her HIV status.[6] There are three main disclosure patterns. Disclosure of HIV status can be complete, partial, or nondisclosure. The child is informed that he or she has HIV and is provided disease-specific information in complete disclosure. In partial disclosure, the child may be aware that he or she has an ailment but is not told that it is HIV.[5]

The disclosure of HIV status is a critical component of HIV-infected children's care. Enhanced adherence, improved daycare or treatment, offering answers to the child's concerns, fulfilling the child's right to know, and the child's ability to protect themselves and others are all linked to disclosure.[5],[7],[8],[9],[10],[11]

Although disclosure is necessary for long-term illness management, it is a difficult process due to the stigma, guilt, humiliation, and fear that can accompany HIV infection.[12],[13] Nondisclosure increases stigma, fosters secrecy, and stops people from taking charge of their health and well-being. Children who are sexually active may unknowingly spread the virus to others.[14] Infected children may be isolated from potential sources of support due to a conspiracy of silence.[15] The children may lose trust in their parents if they learn of their status from someone other than their parents. If a parent dies without informing the child of their status, the child will be deprived of the opportunity to discuss it with that parent.[15] Concealing HIV status can lead to or worsen bad mental health outcomes, interfering with treatment and compromising family life, including parenting abilities and the social and academic life of the child.[16] Without knowing their status, children will be unable to make educated decisions about their care. Knowledge of HIV status is likely to influence medication adherence as well as how the child's health-care professional counsels him or her on sexuality and risk reduction.[14]

Disclosure of HIV status to infected children has a number of benefits. This includes; better adherence to ART, impacts children's participation in health-care decision-making, aids children to understand HIV infection and make sense of their disease-related experiences as well as the need of adhering to the management regimen. Better self-esteem, less depressive symptoms, increased adherence, and higher CD4 counts are also linked to disclosure. Children who are aware of their HIV status are more likely to seek social support and have better-coping abilities than those who are unaware of their status.[9],[13] The importance of status disclosure to HIV-infected children cannot be over-emphasized. Therefore, this study aimed at assessing the prevalence of disclosure of HIV-positive status to HIV-infected children and associated factors at a tertiary hospital in North-west Nigeria.


  Materials and Methods Top


The Nasara clinic treatment center is in Ahmadu Bello University Teaching Hospital (ABUTH), Shika, Zaria. It was established with the help of the President's Emergency Plan for AIDS Relief (PEPFAR). The average patient load is 30 per pediatric clinic day. The Nasara center runs from 8 am to 4 pm daily, from Monday to Friday. The pediatric clinic runs only on Tuesdays and Thursdays. A cross-sectional, descriptive study was conducted in December 2017. The study population was caregivers of HIV-infected children receiving HAART in Nasara clinic, ABUTH, Zaria. Caregivers of children between the age group of 6 and 17 years were included in the study.

The study area had a total of 52 respondents who met the eligibility criterion, and all were used in this study. The data were collected using a pretested, structured, interviewer-administered questionnaire. The questionnaire had three sections. Section A: Sociodemographic characteristics of caregivers, Section B: child's profile, and Section C: determinants of disclosure. Data were cleaned and analyzed using International Business Machines SPSS Statistics for Windows, version 21 (IBM Corp., Armonk, NY, USA). The data were presented on frequency tables. Chi-square test of proportion was used to test for association. Fisher's exact test was used where conditions for Chi-square test were not met. The level of statistical significance was set at P < 0.05.

Permission was sought and obtained from the principal investigator of Nasara clinic before the study was conducted. Information about the study was provided to each participant and their anonymity and the confidentiality of their responses, voluntary participation and right to withdraw at any stage was emphasized, following which informed consent was obtained from each participant.


  Results Top


A total of 52 questionnaires were administered and all the questionnaires were completely and correctly filled. This gave a response rate of 100%. The mean age of the caregivers was 39.0 ± 11.2 years. Majority of the respondents (61.5%) were the mothers of the children. Most of them (73.1%) were married. Only about a third (34.6%) had tertiary education [Table 1].
Table 1: Sociodemographic data of parents/caregivers (n=52)

Click here to view


The mean age of the children was 10.6 ± 2.5 years. There was a slightly higher proportion of girls (51.9%) than boys (48.1%). Most of the children (78.8%) were in primary school. Majority of children (76.5%) above 10 years had been told their HIV status. Most of the children (58.8%) were told their HIV status at between 11 and 17 years of age. Majority (52.9%) were told their HIV status by their mother [Table 2].
Table 2: Sociodemographics and characteristics of children whose human immunodeficiency virus-positive status have been disclosed to them

Click here to view


The most common reason for disclosure (52.9%) was the child's persistent questions about medication. Children's young age was the major reason for nondisclosure among (77.1%) caregivers. Majority of the caregivers (97.3%) who had not told their infected children their HIV-positive status had the intention to disclose in the future. Half (50%) of the respondents intend to disclose when the children are between the ages of 10 and 14 years and the other half between the ages of 15 and 20 years. The mean intended age of disclosure was 13.9 ± 2.9 years [Table 3].
Table 3: Disclosure and nondisclosure of human immunodeficiency virus-positive status to human immunodeficiency virus-infected children

Click here to view


There was no statistically significant association between caregivers' sociodemographic characteristics and HIV status disclosure to children [Table 4].
Table 4: Caregivers' demographic characteristics by disclosure status of children (n=52)

Click here to view


There was a statistically significant association between the age of the child (P = 0.003), level of education of the child (P = 0.000) and HIV status disclosure [Table 5].
Table 5: Characteristics of children by human immunodeficiency virus disclosure status (n=52)

Click here to view


There was no statistically significant association between the HIV status of respondents and HIV disclosure to infected children (P = 0.693).


  Discussion Top


HIV status disclosure is an important element of the HIV-positive person's life and in HIV management. Due to concern about children's ability to understand and cope with the nature of the illness, stigma, family connections, and issues about social assistance, disclosure decisions are especially difficult when children are involved.[16] As children grow older it becomes imperative for them to be told their HIV status and the primary caregivers as well as the health care workers are faced with the decision of whether to disclose or not, when and how the disclosure should be done.[17]

The prevalence of disclosure in this study was 32.7%. This finding is similar to the prevalence of 30.1% reported in Thailand and 29% reported in Uganda.[18],[19] The disclosure rate was also found to be low in studies done in Zambia and Tanzania.[20],[21] The finding in this study falls within the range found in the United States of America and Canada, which was between 25 and 70 percent, although close to the lower limit.[22] This was also the case in studies in Ghana and Ethiopia, which were 21% and 17.4%, respectively.[5],[8] In general, low HIV seropositive disclosure rates have been found in sub-Saharan countries and also in other resource-limited settings.[20],[23] A low HIV disclosure rate has its implications, considering that disclosure to children has the advantage of not only maintaining personal health but also preventing HIV infection in the larger population.[12]

Almost all caregivers in this study who had not told their children their HIV status opined that the child should be informed about their diagnosis, and almost all intended to do so. Similar findings were reported in previous studies.[24],[25],[26] Reasons reported for nondisclosure were similar to those found in previous studies.[7],[8],[27],[28] These were the perceived young age of the child, fear of inadvertent disclosure, fear of the emotional effect on the child, fear of stigma, and social isolation and fear of blame for infecting the child. The perceived young age of the child was the reason given for nondisclosure by the majority of the respondents in this study. The recommended age range for HIV_positive status disclosure to children disclosure of status to HIV-positive children is 6–12 years.[16]

In this study, about a third of the respondents cited the emotional immaturity of the children as a reason for nondisclosure of HIV-positive status. With regard to fear of the emotional effect of disclosure on the child, studies suggest that children who know their HIV status have higher self-esteem than children who are unaware of their status. The parents also benefit from disclosure. It has been shown that parents who have disclosed the status to their children experience less depression than those who have not.[29] Parents feel relieved of the burden of keeping secrets and less anxious about medical visits and the possibility of accidental disclosure.[30]

Almost all the respondents that were yet to disclose to their children have plans to do so in the future. This is similar to a study in North Thailand.[30]

Fear of stigma and social isolation is another reason given in this study for nondisclosure. Stigmatization creates an unnecessary culture of secrecy and silence based on ignorance and fear of victimization.[31] There is a concern that children might not be able to keep the diagnosis secret resulting in stigmatization and isolation for them.[32]

In this study, the relationship between caregivers' sociodemographic characteristics (age, sex, tribe, religion, relationship to the child, level of education, and occupation) and HIV-positive status disclosure to children was not statistically significant. In the Ethiopian study, illiterate caregivers were more likely to disclose the child's HIV status, while the North Indian study showed that disclosure was more with caregivers of higher educational levels.[22],[29] There was no statistically significant relationship between the HIV status of the caregivers and disclosure of HIV status to infected children in this study.

The association between the age and level of education of the child with disclosure was statistically significant. This finding is consistent with studies conducted in Ghana, Brazil, and Ethiopia.[5],[27],[33] In this study, only 23.5% of children between the age group of 5 and 10 years were told their HIV-positive status while majority (76.5%) were told their HIV status at age 11 years and above. A similar study in South Africa reported disclosure of HIV status in 17% of children <10 years and 77% HIV-positive status disclosure in children aged 11 years and above. This difference by age group could be because children of age 11 and above are likely to be more persistent in questioning the reasons as to why they were constantly on medication despite not being sick.

The level of education also had a statistically significant relationship with disclosure of HIV status to infected children. This finding is similar to that reported in Ghana where the level of education was a major determinant of disclosure.[5]


  Conclusion Top


The prevalence of HIV status disclosure to HIV-positive children in the study area was unacceptably low. Disclosure was hampered majorly by the young age of the child. To facilitate disclosure, caregivers should be counseled on disclosure and related misconceptions that hinder it. Standardized training of caregivers on HIV status disclosure to children should be carried out by health-care workers.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

1.
Sahay S. Coming of age with HIV: A need for disclosure of HIV diagnosis among children/adolescents. J HIV AIDS Infect Dis 2013;1:1-7.  Back to cited text no. 1
    
2.
World Health Organization. HIV/AIDS. Global Situation and Trends. Global Health Observatory Data. World Health Organization; 2021. Available from: https://www.who.int/data/gho/data/themes/hiv-aids. [Last accessed on 2021 May 18].  Back to cited text no. 2
    
3.
Beyene GA, Dadi LS, Mogas SB. Determinants of HIV infection among children born to mothers on prevention of mother to child transmission program of HIV in Addis Ababa, Ethiopia: A case control study. BMC Infect Dis 2018;18:327.  Back to cited text no. 3
    
4.
UNAIDS. 2013 Report on the Global AIDS Plan Towards the Elimination of New HIV Infections among Children by 2015 and Keeping their Mothers Alive. Geneva: The Joint United Nations Programme on HIV/AIDS (UNAIDS). Available from: http://www.unaids.org/believeitdoit/the-global-plan.html. [Last accessed on 2018 Feb 27].  Back to cited text no. 4
    
5.
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;15:1121-7.  Back to cited text no. 5
    
6.
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;16:1083.  Back to cited text no. 6
    
7.
Brown BJ, Oladokun RE, Osinusi K, Ochigbo S, Adewole IF, Kanki P. Disclosure of HIV status to infected children in a Nigerian HIV Care Programme. AIDS Care 2011;23:1053-8.  Back to cited text no. 7
    
8.
Biadgilign S, Deribew A, Amberbir A, Deribe K. Barriers and facilitators to antiretroviral medication adherence among HIV-infected paediatric patients in Ethiopia: A qualitative study. SAHARA J 2009;6:148-54.  Back to cited text no. 8
    
9.
Vreeman RC, Nyandiko WM, Ayaya SO, Walumbe EG, Marrero DG, Inui TS. The perceived impact of disclosure of pediatric HIV status on pediatric antiretroviral therapy adherence, child well-being, and social relationships in a resource-limited setting. AIDS Patient Care STDS 2010;24:639-49.  Back to cited text no. 9
    
10.
Corneli A, Vaz L, Dulyx J, Omba S, Rennie S, Behets F. The role of disclosure in relation to assent to participate in HIV-related research among HIV-infected youth: A formative study. J Int AIDS Soc 2009;12:17.  Back to cited text no. 10
    
11.
Hayfron-Benjamin A, Obiri-Yeboah D, Ayisi-Addo S, Siakwa PM, Mupepi S. HIV diagnosis disclosure to infected children and adolescents; challenges of family caregivers in the Central Region of Ghana. BMC Pediatr 2018;18:365.  Back to cited text no. 11
    
12.
Vaz LM, Maman S, Eng E, Barbarin OA, Tshikandu T, Behets F. Patterns of disclosure of HIV status to infected children in a Sub-Saharan African setting. J Dev Behav Pediatr 2011;32:307-15.  Back to cited text no. 12
    
13.
Tamir Y, Aychiluhem M, Jara D. Disclosure Status and Associated Factors among Children Living With HIV in East Gojjam, Northwest of Ethiopia. Available from: http://primarycare.imedpub.com/disclosure-stat/. [Last accessed on 2016 Mar 02].  Back to cited text no. 13
    
14.
Disclosure of HIV to Perinatally Infected Children and Adolescents. New York State Department of Health AIDS Institute. Available from: http://www.hivguidelinesorg/adolescents/. [Last accessed on 2018 Feb 27].  Back to cited text no. 14
    
15.
Disclosure of illness status to children and adolescents with HIV infection. American Academy of Pediatrics Committee on Pediatrics AIDS. Pediatrics 1999;103:164-6.  Back to cited text no. 15
    
16.
World Health Organization. Guideline on HIV Disclosure Counseling for Children up to 12 Years of Age. Geneva: World Health Organization; 2011. Available from: http://www.who.int/hiv/pub/hiv_disclosure/en/. [Last accessed on 2018 Apr 17].  Back to cited text no. 16
    
17.
Yetti K, Lindayani L, Huang MC. Children HIV disclosure: Should the children know their HIV status prior treatment and what are the information have to be told? Clin Ethics 2020;15:162-6.  Back to cited text no. 17
    
18.
Dematteo D, Harrison C, Arneson C, Goldie RS, Lefebvre A, Read SE, et al. Disclosing HIV/AIDS to children: The paths families take to truth telling. Psychol Health Med 2002;7:339-56.  Back to cited text no. 18
    
19.
Pinzón-Iregui MC, Beck-Sagué CM, Malow RM. Disclosure of their HIV status to infected children: A review of the literature. J Trop Pediatr 2013;59:84-9.  Back to cited text no. 19
    
20.
Tsuzuki S, Ishikawa N, Miyamoto H, Dube C, Kayama N, Watala J, et al. Disclosure to HIV-seropositive children in rural Zambia. BMC Pediatr 2018;18:272.  Back to cited text no. 20
    
21.
Mumburi LP, Hamel BC, Philemon RN, Kapanda GN, Msuya LJ. Factors associated with HIV-status disclosure to HIV-infected children receiving care at Kilimanjaro Christian Medical Centre in Moshi, Tanzania. Pan Afr Med J 2014;18:50.  Back to cited text no. 21
    
22.
Biadgilign S, Deribew A, Amberbir A, Escudero HR, Deribe K. Factors associated with HIV/AIDS diagnostic disclosure to HIV infected children receiving HAART: A multi-center study in Addis Ababa, Ethiopia. PLoS One 2011;6:e17572.  Back to cited text no. 22
    
23.
Vreeman RC, Gramelspacher AM, Gisore PO, Scanlon ML, Nyandiko WM. Disclosure of HIV status to children in resource-limited settings: A systematic review. J Int AIDS Soc 2013;16:18466.  Back to cited text no. 23
    
24.
Boon-Yasidhi V, Kottapat U, Durier Y, Plipat N, Phongsamart W, Chokephaibulkit K, et al. Diagnosis disclosure in HIV-infected Thai children. J Med Assoc Thai 2005;88 Suppl 8:S100-5.  Back to cited text no. 24
    
25.
sVaz LM, Eng E, Maman S, Tshikandu T, Behets F. Telling children they have HIV: Lessons learned from findings of a qualitative study in sub-Saharan Africa. AIDS Patient Care STDS 2010;24:247-56.  Back to cited text no. 25
    
26.
Sphiwe M. Patterns of HIV diagnosis disclosure to infected children and family members: Data from a paediatric antiretroviral program in South Africa. World J AIDS 2012;2:212-21.  Back to cited text no. 26
    
27.
Abadía-Barrero CE, Larusso MD. The disclosure model versus a developmental illness experience model for children and adolescents living with HIV/AIDS in São Paulo, Brazil. AIDS Patient Care STDS 2006;20:36-43.  Back to cited text no. 27
    
28.
Bhattacharya M, Dubey AP, Sharma M. Patterns of diagnosis disclosure and its correlates in HIV-Infected North Indian children. J Trop Pediatr 2011;57:405-11.  Back to cited text no. 28
    
29.
Wiener L, Theut S, Steinberg SM, Riekert KA, Pizzo PA. The HIV-infected child: Parental responses and psychosocial implications. Am J Orthopsychiatry 1994;64:485-92.  Back to cited text no. 29
    
30.
Oberdorfer P, Puthanakit T, Louthrenoo O, Charnsil C, Sirisanthana V, Sirisanthana T. Disclosure of HIV/AIDS diagnosis to HIV-infected children in Thailand. J Paediatr Child Health 2006;42:283-8.  Back to cited text no. 30
    
31.
Famoroti TO, Fernandes L, Chima SC. Stigmatization of people living with HIV/AIDS by healthcare workers at a tertiary hospital in KwaZulu-Natal, South Africa: A cross-sectional descriptive study. BMC Med Ethics 2013;14 Suppl 1:S6.  Back to cited text no. 31
    
32.
Ostrom RA, Serovich JM, Lim JY, Mason TL. The role of stigma in reasons for HIV disclosure and non-disclosure to children. AIDS Care 2006;18:60-5.  Back to cited text no. 32
    
33.
Negese D, Addis K, Awoke A, Birhanu Z, Muluye D, Yifru S, et al. HIV-positive status disclosure and associated factors among children in North Gondar, Northwest Ethiopia. ISRN AIDS 2012;2012:485720.  Back to cited text no. 33
    



 
 
    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5]



 

Top
 
 
  Search
 
Similar in PUBMED
   Search Pubmed for
   Search in Google Scholar for
 Related articles
Access Statistics
Email Alert *
Add to My List *
* Registration required (free)

 
  In this article
Abstract
Introduction
Materials and Me...
Results
Discussion
Conclusion
References
Article Tables

 Article Access Statistics
    Viewed118    
    Printed4    
    Emailed0    
    PDF Downloaded17    
    Comments [Add]    

Recommend this journal


[TAG2]
[TAG3]
[TAG4]