scholarly journals CAREGIVERS’ EXPERIENCES IN CARING FOR HIV POSITIVE CHILDREN: A QUALITATIVE STUDY AT A COMPREHENSIVE CARE CENTRE IN KENYA

2021 ◽  
Vol 7 (2) ◽  
pp. 45-55
Author(s):  
Drusilla Makworo

Purpose: Caring for HIV positive children poses various challenges and uncertainties depending on the disclosure of their status. To explore the caregivers’ experiences in caring for HIV positive children before, during and after disclosure of their HIV positive status. Methodology: A qualitative study was conducted a Comprehensive Care Centre in a national referral Hospital in Kenya. The study population included parents/guardians of HIV positive children with complete disclosure of their HIV status. Data was collected through in-depth interviews. The socio-demographic characteristics of the respondents were analysed using descriptive statistics. The qualitative data is analysed by use of content analysis and presented in themes and narratives. Results: The results revealed that caring for these children was more challenging before disclosure than after disclosure. The main challenge was in responding to the children’s questions in regards to their health status. The questions asked by the children before disclosures include the reason for treatment, clinic follow up and when treatment will stop among others. The study further established that the parents/guardians expressed diverse fears of how the children might react during disclosure; however, the children mostly did not display the feared reactions at the moment of disclosure. Finally, the findings of this study established that care after disclosure becomes easier and that the children become more engaged in their own care. Conclusion: The study found that caring for HIV positive children is less challenging after disclosure of their HIV status.  Further, fears by caregivers are unfounded and there are minimal negative reactions by the children upon disclosure. In order to become actively engaged in their own care, children as early as 11 years old need to be informed about their positive HIV status. Unique contribution to practice, theory and policy: The healthcare providers should ensure early preparation of the caregivers for disclosure to the children of their HIV status. Further, community members and school teachers need to be educated about the beneficial effects of disclosure of an HIV diagnosis to a child or adolescent. Research is needed on the development and implementation of caregiver support groups similar to that of children living with HIV. Purpose: Caring for HIV positive children poses various challenges and uncertainties depending on the disclosure of their status. To explore the caregivers’ experiences in caring for HIV positive children before, during and after disclosure of their HIV positive status. Methodology: A qualitative study was conducted a Comprehensive Care Centre in a national referral Hospital in Kenya. The study population included parents/guardians of HIV positive children with complete disclosure of their HIV status. Data was collected through in-depth interviews. The socio-demographic characteristics of the respondents were analysed using descriptive statistics. The qualitative data is analysed by use of content analysis and presented in themes and narratives. Results: The results revealed that caring for these children was more challenging before disclosure than after disclosure. The main challenge was in responding to the children’s questions in regards to their health status. The questions asked by the children before disclosures include the reason for treatment, clinic follow up and when treatment will stop among others. The study further established that the parents/guardians expressed diverse fears of how the children might react during disclosure; however, the children mostly did not display the feared reactions at the moment of disclosure. Finally, the findings of this study established that care after disclosure becomes easier and that the children become more engaged in their own care. Conclusion: The study found that caring for HIV positive children is less challenging after disclosure of their HIV status.  Further, fears by caregivers are unfounded and there are minimal negative reactions by the children upon disclosure. In order to become actively engaged in their own care, children as early as 11 years old need to be informed about their positive HIV status. Unique contribution to practice, theory and policy: The healthcare providers should ensure early preparation of the caregivers for disclosure to the children of their HIV status. Further, community members and school teachers need to be educated about the beneficial effects of disclosure of an HIV diagnosis to a child or adolescent. Research is needed on the development and implementation of caregiver support groups similar to that of children living with HIV.

2020 ◽  
Author(s):  
Constance Mongwenyana ◽  
Nelly Jinga ◽  
Given Mohomi ◽  
Sindisiwe Buthelezi ◽  
Nancy Nkopane ◽  
...  

Abstract Background: The implementation of Prevention of Mother to Child Transmission (PMTCT) programmes at midwifes obstetric units (MOU) involves the confirmation of HIV diagnosis during labour, early infant HIV diagnosis (EID), initiation/continuation of antiretroviral therapy (ART) for mother and baby as appropriate and counselling for postpartum care. Objectives: The aim of this study was to explore the barriers and facilitators to completing the steps in the PMTCT cascade at MOUs as defined by healthcare providers and recently postpartum women. Methods: We conducted 10 in-depth interviews with healthcare providers, and 24 HIV positive and HIV negative women at the four MOUs and Primary Healthcare Centres (PHC’s) in Gauteng South Africa (SA). Results: The implementation of PMTCT at MOU is impeded by maternal denial of HIV status (both new diagnoses and ANC diagnoses). Challenges with acceptance and disclosure of HIV status were thought to compromise patient commitment to EID tests and postpartum adherence to infant ART. Newly diagnosed (during labour) patients have limited time to process new HIV diagnosis and clinics have limited nurse/counsellor capacity for further one on one counselling. Additional challenges include communication challenges with foreign women and turnaround time for birth HIV tests. Results are often not available at postnatal visit and unclear processes for referral to Primary Healthcare Centre (PHC) for postpartum care increase risk of postpartum loss to follow up. Conclusion: We need to strengthen MOU capacity to prepare women for postpartum PMTCT requirements and facilitate access to EID results. Patient referral processes, including communication of infant HIV test results to the referral PHC, needs improvement.


2019 ◽  
Vol 13 (3) ◽  
pp. 1-7
Author(s):  
Drusilla Makworo ◽  
Theresa Odero

Background The number of children living with HIV has increased worldwide, largely due to improvements in antiretroviral therapy. Most of these children are living in sub-Saharan Africa. The rate of disclosure to children of their HIV-positive status is low in low-resource countries compared to high-resource countries. Aim To explore health professionals' experiences of caring for HIV-positive children before and after their HIV-positive status was disclosed to them. The health professionals included nurses, counsellors, nutritionists, social workers, pharmacists and clinicians with at least 1 year of experience at the paediatric section of the comprehensive care centre. Methods Nine health professionals were interviewed. Findings Results revealed that there were more challenges before disclosure than after. The main challenge was communicating with the children. The children's main concerns before disclosures included the reason for treatment and its duration, and clinic follow-up. Conclusions Health professionals should be trained on the benefits of HIV disclosure to children, in order to allow for open and direct communication between healthcare providers, parents/carers and children.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Elysée Manziasi Sumbi ◽  
Emilie Venables ◽  
Rebecca Harrison ◽  
Mariana Garcia ◽  
Kleio Iakovidi ◽  
...  

Abstract Background It is estimated that 64,000 children under 15 years of age are living with HIV in the Democratic Republic of Congo (DRC). Non-disclosure – in which the child is not informed about their HIV status - is likely to be associated with poor outcomes during adolescence including increased risk of poor adherence and retention, and treatment failure. Disclosing a child’s HIV status to them can be a difficult process for care-givers and children, and in this qualitative study we explored child and care-giver experiences of the process of disclosing, including reasons for delay. Methods A total of 22 in-depth interviews with care-givers and 11 in-depth interviews with HIV positive children whom they were caring for were conducted in one health-care facility in the capital city of Kinshasa. Care-givers were purposively sampled to include those who had disclosed to their children and those who had not. Care-givers included biological parents, grandmothers, siblings and community members and 86% of them were female. Interviews were conducted in French and Lingala. All interviews were translated and/or transcribed into French before being manually coded. Thematic analysis was conducted. Verbal informed consent/assent was taken from all interviewees. Results At the time of interview, the mean age of children and care-givers was 17 (15–19) and 47 (21–70) years old, respectively. Many care-givers had lost family members due to HIV and several were HIV positive themselves. Reasons for non-disclosure included fear of stigmatisation; wanting to protect the child and not having enough knowledge about HIV or the status of the child to disclose. Several children had multiple care-givers, which also delayed disclosure, as responsibility for the child was shared. In addition, some care-givers were struggling to accept their own HIV status and did not want their child to blame them for their own positive status by disclosing to them. Conclusions Child disclosure is a complex process for care-givers, health-care workers and the children themselves. Care-givers may require additional psycho-social support to manage disclosure. Involving multiple care-givers in the care of HIV positive children could offer additional support for disclosure.


2014 ◽  
Vol 9 (2) ◽  
pp. 139-149 ◽  
Author(s):  
Francisco Sastre ◽  
Diana M. Sheehan ◽  
Arnaldo Gonzalez

HIV-positive men are living long and healthier lives while managing HIV as a chronic illness. Although research has extensively documented the experiences of illness of people living with HIV, dating, marriage, and fatherhood among heterosexual Latino men has not been examined. To address this gap, this study used a qualitative study design to examine patterns and strategies for dating, marriage, and parenthood among 24 HIV-positive heterosexual Puerto Rican men living in Boston. The findings in our study indicate that an HIV diagnosis does not necessarily deter men from having an active sexual life, marrying, or having children. In fact, for some of the men, engaging in these social and life-changing events is part of moving on and normalizing life with HIV; these men planned for, achieved, and interpreted these events in the context of establishing normalcy with HIV. Although the HIV diagnosis discouraged some men from engaging in sexual relations, getting married, or having children, others fulfilled these desires with strategies aimed to reconciling their HIV status in their personal life, including dating or marrying HIV-positive women only. Additional important themes identified in this study include the decision to disclose HIV status to new sexual partners as well as the decision to accept the risk of HIV transmission to a child or partner in order to fulfill desires of fatherhood. Understanding the personal struggles, decision-making patterns, and needs of HIV-positive heterosexual men can aid in designing interventions that support healthy living with HIV.


BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e033790 ◽  
Author(s):  
Mohit Nair ◽  
Pragya Kumar ◽  
Sanjay Pandey ◽  
Amit Harshana ◽  
Shahwar Kazmi ◽  
...  

ObjectivesThis study aimed to explore barriers to accessing care, if any, among people living with HIV/AIDS (PLHA) in two districts of Bihar. We also aimed to assess attitudes towards PLHA among healthcare providers and community members.DesignThis qualitative study used an exploratory study design through thematic analysis of semistructured, in-depth interviews.SettingTwo districts were purposively selected for the study, namely the capital Patna and a peripheral district located approximately 100 km from Patna, in order to glean insights from a diverse sample of respondents.ParticipantsOur team purposively selected 71 participants, including 35 PLHA, 10 community members and 26 healthcare providers.ResultsThe overarching theme that evolved from these data through thematic coding identified that enacted stigma and discrimination interfere with each step in the HIV care continuum for PLHA in Bihar, India, especially outside urban areas. The five themes that contributed to these results include: perception of HIV as a dirty illness at the community level; non-consensual disclosure of HIV status; reliance on identifying PLHA to guide procedures and resistance to universal precautions; refusal to treat identified PLHA and referrals to other health centres for treatment; and inadequate knowledge and fear among health providers with respect to HIV transmission.ConclusionsThe continued presence of discriminatory and stigmatising attitudes towards PLHA negatively impacts both disclosure of HIV status as well as access to care and treatment. We recognise a pressing need to improve the knowledge of HIV transmission, and implement universal precautions across all health facilities in the state, not just to reduce stigma and discrimination but also to ensure proper infection control. In order to improve treatment adherence and encourage optimal utilisation of services, it is imperative that the health system invest more in stigma reduction in Bihar and move beyond more ineffective, punitive approaches.


Author(s):  
Priya S. ◽  
Lathika Nayar ◽  
Purushothaman K. K.

Background: The pattern and rates of disclosure of HIV status to infected children may differ within a country, and among the states, based on the socioeconomic, cultural, and even health status. Understanding this pattern is important in the formulating guidelines of disclosure on their HIV diagnosis to children infected by HIV, and to design strategies for improvement of adherence. This study was proposed to study the pattern of disclosure of HIV status in children aged 6 to 17 years.Methods: This cross sectional study was conducted for a year (2016-2017) at a Pediatric HIV clinic in Thrissur, Kerala. Participants for this study were 58 HIV-infected children in the age group of 6-17 years who were on ART, and their parents/caregivers.Results: Among the 58 participants, only 25 (43.1%) were aware of their HIV status, either fully (17; 68%) or partially (8; 32%). Healthcare providers were more likely to disclose the status to the affected child. Majority of the participants (84%) had better compliance to therapy after disclosure and most of the children in the non-institutional group were more supportive towards their parents (50%) after disclosure. The factors that were associated with disclosure in the non-institutional group were age of the child and duration of therapy.Conclusions: Children infected with HIV showed better adherence after complete disclosure. Rate of disclosure can be improved by reviewing the disclosure hurdles in our state so that intervention programs can be planned for improving the rate of disclosure.


2011 ◽  
Author(s):  
Michael M. Omizo ◽  
Bryan S. K. Kim ◽  
Ryoji Matsuoka ◽  
Michael Pickren

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