Literature DB >> 36194615

"Some believe those who say they can cure it" perceived barriers to antiretroviral therapy for children living with HIV/AIDS: Qualitative exploration of caregivers experiences in tamale metropolis.

Gideon Awenabisa Atanuriba1, Felix Apiribu2, Veronica Millicent Dzomeku2, Philemon Adoliwine Amooba2, Adwoa Bemah Boamah Mensah2, Richard Adongo Afaya3, Timothy Gazari3, Timothy Tienbia Laari2,4, Moses Haruna Akor5, Linda Abnory6.   

Abstract

BACKGROUND: HIV/AIDS is now a chronic disease, as adherence to anti-retrovirals impacts positively on the quality as well as expectancy of life. However, there exist multifaceted barriers to treatments for which children are most disadvantaged. Since Ghana subscribed to the "treat all" policy less percentage (25.5%) of children (2-14 years) living with HIV/AIDS have been enrolled on the antiretroviral program compared to other categories of the population by 2019. At present no study has explored these barriers to children living with HIV/AIDS enrollment and adherence. This study aims to explore the perceived barriers of caregivers of children living with HIV/AIDS in the Tamale Metropolis.
METHODS: We used descriptive phenomenology to explore the phenomena. Caregivers were purposively selected and interviewed till information became repetitive at the ninth (9th) caregiver. A semi-structured interview guide was used to collect data through face-to-face in-depth interviews which were audio recorded. The interviews lasted an average of 47 minutes. Audio interviews were transcribed verbatim (English) and translated back-to-back (Daghani) before analysis was done manually according to Collaizi's seven-step approach. We used the Guba and Lincoln guidelines to ensure the rigour of the study and its findings. Results are presented in themes and supported with quotes.
RESULTS: Six themes emerged from the analysis of the caregivers' transcripts; (1) denial of HIV/AID diagnosis, (2) stock-outs and privacy at the clinic, (3) busy schedule and poor support, (4) ignorance and alternative herbal cure, (5) stigma and discrimination, (6) transportation and distance.
CONCLUSION: Perceived barriers are multi-dimensional and encountered by all PLWHA, especially children. These barriers could derail the gains of HIV/AIDS interventions among children. Adherence counselling among caregivers alongside campaigns among faith and herbal healers are of grave concern to reduce myths of cure.

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Year:  2022        PMID: 36194615      PMCID: PMC9531795          DOI: 10.1371/journal.pone.0275529

Source DB:  PubMed          Journal:  PLoS One        ISSN: 1932-6203            Impact factor:   3.752


Introduction

HIV/AIDS has gained a manageable chronicity status just a little over a decade after the medical technological breakthrough with Highly Active Anti-Retroviral Therapeutic (HAART). As many more infected are having their quality and expectancy of life-improving [1]. However, the effects of one of the most dared diseases of history have exerted systematic and structural effects in many resource-constrained countries especially those in Africa [2]. Visible social, economic and political connotations of HIV/AIDS have had profound direct or indirect effects on every household in the sub-Saharan region where its prevalence is the highest [1, 2]. For pediatric infections, vertical transmission during pregnancy, labour and delivery, or through breastfeeding is most common [3]. However, with AIDS free-generation agenda by the World Health Governing Body-World Health Organization (WHO) zealous target code christened 90-90-90 by 2020 has not achieved its goals globally. Signifying the aim of ensuring that 90% of all people living with HIV will know their status, 90% of all people diagnosed will receive sustained ART and 90% of all PLWHA receiving ART have viral suppression has been fulfilled [4]. Interventions have garnered increased awareness, voluntary counselling, access to ARVs, and stopping stigmatization among others. These interventions have slowed infections and optimal health of affected individuals [5, 6]. However, pieces of evidence clearly show that with voluntary counselling and testing agenda, more people are knowing their status but fewer of them are enrolling on the ART program and achieving viral suppression as envisaged [7]. After careful empiric research “treat all” policy by WHO was instituted in September 2016 where ARVs were to be provided for all PLWHA regardless of the levels of Cluster of Differentiation 4 (CD4) count. A move away from prior guidelines to ART where interventions with cut-off points by CD4 count. By October same year Ghana ascribed to the policy [8]. This meant HIV and AIDS care required not just emphasis on improving prevention interventions but scaling up measures to ensure the availability of ART and viral load testing services in Ghana. About five years of adopting the “treat all” policy, though there has been steady progress, children are still at the mercy of several impediments to proper access and adherence to ARVs [9, 10]. On the global front, the 90-90-90 agenda has achieved 81%-67%-59% at a prevalence of 0.7% (38.0million) [11] whereas, Ghana with a prevalence of 1.69% (334,713 PLWHA), has since achieved 58%-77%-68% by 2019. In Ghana, there are about 25,955(8%) CLWHA (0–14 years), with an estimated 2,972(15%) new infections and 2,441 (18%) deaths [9]. ART coverage has disproportionately been unfavourable to children who are powerless and have their ability to benefit from ARVs in the hands of their caregivers. Data shows 46.55% ART coverage among adults (15+ years), 53.76% women (15+ years) and just 25.55% children (0-14years) living with HIV [9, 10]. Evidence suggests optimal and strict adherence of 95% and above is required over the long term to ensure the full benefits of the treatment [12]. Large-scale surveys have buttress reports that show high levels of positive outcomes of ARVs adherence should range between 80%-95% depending on the varying levels of ARV potency [13]. However, they report about 23% of Africans on ART were achieving less than 80% proper adherence which negatively impacts their prognosis. Proper enrollment and adherence to ART have been documented to; ensure suppression of viral replication, progressively halt the destruction of CD4 cells, prevent viral resistance, boost immune rebuilding of severely immune-suppressed, increase life expectancy, improved quality of life, decrease side or adverse effects of ARVs, and slow disease progression [14-16]. Adherence to ART among people living with HIV/AIDS (PLWHA) is multifaceted and requires; a proper understanding of ART and HIV, conscious efforts to comply with adherence counselling, education, changing lifestyle, proper nutrition, presence of psychosocial support, active supportive care and availability of a considerate home caregiver [12]. Implying an interrelated coordinated effort involving PLWHA, their home caregivers and formal health caregivers is considered crucial [17]. Evidence suggests poor adherence to ART regimens is highly associated with low therapeutic success, higher viral loads, increased frequency of hospital visits, cost of treatment, longer stays on admission, viral resistance, disabilities and even deaths [16, 18]. Studies on barriers to enrollment and adherence include; stigma, food insecurity, troubling side effects, poor knowledge of ART, stress, lack of support, pill burden, substance abuse, and depression among others [13, 19]. Other evidence in South Africa [20] has identified stock-outs and shortages as a barrier to ART adherence. Over time HIV/AIDS diagnosis has been symbolized by death sentence and ugly associated with morality, personal failures and promiscuity [21] admonished. They explained this has intensified the shame, guilt and stigma associated with HIV/AIDS serving as a barrier for PLWHA to willingly seek HIV care and adhere to treatment. Similarly, in Uganda where [4] qualitatively explored these barriers; treatment for opportunistic infections and antiretroviral drugs were most reported to be inadequate. As many PLWHA are afraid to start ARVs due to shortages, distance, staffing problems/ shortage, persistent stigma, and lack of social and economic support initiatives that will favour retention. Facilitators of ART adherence explored in Nigerian PLWHA reported 85.53% satisfied with the providers’ interpersonal skills, and environment at the centre (77.63%) [22]. For children less than 15 years, globally 91% of the infected about 3.2 million children reside in sub-Sahara Africa by 2015. The gendered nature of caring and nurturing has shifted enormous strain on vulnerable females who assume roles of caring for children living with HIV/AIDS (CLWHA). The Guidelines for Antiretroviral Therapy in Ghana recognize the unique role of guardians or caregivers as crucial to the successful initiation and maintenance of ART among children [8]. The document avers the lack of reliable caregivers as a setback to the health and welfare of CLWHA. ‘No child should die due to lack of access to treatment’ USAID declared [19]. This agenda together with WHO seeks to ensure everyone child living with HIV has access to life-saving medication in the form of ARVs. To better understand this phenomenon among children, home caregivers are crucial, because they are pivotal in the health-seeking choices of these vulnerable populations. In Ghana, prior studies on the barriers to ART access occurred before the “treat all” policy and often in Southern Ghana [23, 24]. To the best of our knowledge, no study has explored the perceived barriers to ART enrollment and adherence among children in Ghana. This qualitative exploration seeks to provide light on the perceived barriers to ART enrollment and adherence among children living with HIV/AIDS from their home caregivers.

Materials and methods

Design, setting, and population

We used a descriptive phenomenological approach to explore the perceived barriers to ART enrollment and adherence among home caregivers of CLWHA. This approach was used because it seeks to describe the life experiences of people about the phenomena. This type of phenomenology was first described by Husserl, referring to the meaning and essence people have about a phenomenon is described while making sure researcher(s) presuppositions are bracketed [25]. The study, therefore, was undertaken with recourse to the descriptive phenomenological philosophical assumptions of; bracketing, a less rigid approach to methods as it emerges in the course of the study, the intentionality of consciousness, and refusal of subjectivity and objectivity dichotomy since the approach relies on both [25, 26]. The study was conducted in the Tamale metropolis, the capital of the northern region by extension the whole of northern Ghana [27]. The metropolis is the third-largest urban area in Ghana. It’s inhabited by 233,252 people, representing 9.4% of the region’s population with 80.8% being urban dwellers. About 60.1% and 60% are literate and economically inactive respectively [27]. According to Ghana AIDS Commission in 2019 [9], the region has an HIV prevalence of 0.31% (3,697) while the metropolis stands at a prevalence of 0.68%. Three hospitals were purposively selected for this study due to the presence of structured ART Clinics. These facilities are comprised of a tertiary (Tamale Teaching Hospital) and two secondary level hospitals (Tamale West Hospital and Tamale Central Hospital). They served as referral centres for the five northern regions and neighbouring countries such as Togo, Ivory Coast and Burkina Faso. The hospitals serve as training centres for students and provide in-patient services as well as out-patient care services. Home caregivers of CLWHA who attended ART clinics in the metropolis were purposively sampled as the population for the study. Home caregivers refer to informal active people who care for the child at home. They ensure the spiritual, financial, physical and emotional as well as psychological needs of the children are met. Pivotal among their roles is to ensure children get enrolled on the ART program, adhere to clinic appointments for collecting ARVs supplies and adherence to the therapeutic regimen [8]. Their exposition of the phenomena perceived barriers because they were asked, what are some of the reasons that prevent other caregivers from bringing their CLWHA to the ART clinics for treatment? Caregivers aged 18–80 years actively caring for children 2–14 years who provided at least 6 months of continual care were included in this study. These caregivers involved in the study were those who could speak English or Daghani and care for children who are not newly diagnosed with HIV/AIDS. This was to take away the expressions of newly diagnosed (less than six months) who may express extreme experiences because of the acute nature of being exposed to the phenomena.

Sampling and sample size determination

We used purposive sampling to select caregivers from the target population. The sampling technique was used because of its wide relevance and usage among qualitative researchers and its ability to select well-informed participants with vast experiences with the phenomena [28]. As such, we used criterion purposive sampling where the inclusion and exclusion criteria were followed strictly. The sample size was determined by data saturation. A point at which data became redundant and interviews were not yielding new information as it became repetitive. To ascertain saturation and the need to end interviews, they were analyzed concurrently and iteratively with data collection. Data became saturated at the ninth (9th) caregiver interview. As we recruited throughout the three ART clinics during specific scheduled ARV appointment days in the metropolis. However, whenever a prospective participant reports to a clinic where the team was not there, the Unit Head calls and time is made to meet the prospect. First interviews were analyzed carefully and the themes that emerged from those were then followed up in the subsequent interviews till saturation was achieved.

Instrument

We constructed a semi-structured interview guide based on the specific objectives and literature. The instrument consists of two major parts. Section-A, collected biographic data of both the CLWHA (age, sex, level of education, and duration of being on ART) and the caregiver (age, sex, relations, occupation, and HIV status). Section-B, entailed questions about caregivers’ perceived barriers to ART enrollment and adherence. Probes about perceived barriers bothered on; individual caregiver barriers, facility/hospital level, and community/societal factors.

Data collection procedure

The varied biographic background (age, sex, and religion) of the caregivers did not favour focused group discussion. Also, conducting a focused group discussion would have been overwhelmingly difficult due to logistical and socio-cultural constraints. Bearing that participants lived long distances from the facilities and had different appointment dates, bringing them together for group interviews would have been extremely difficult. More so, getting participants to openly talk about their disease condition is difficult, especially about HIV/AIDS which is stigmatized. As such face-to-face in-depth individual interviews were conducted. From September to November, 2019, the lead author and a language expert in Daghani conducted the interviews at caregivers’ places and times of convenience at the hospital or home of caregivers. Caregivers were introduced to the study during their ARV collection appointment days at the clinic while awaiting or after consultation. Those who could read and write were given a Participant’s Information Leaflet to acquaint themselves with the study while those who could not be taken through for a fair understanding of the protocols. This allowed them to understand the; purpose, benefits, risk, voluntary consent and withdrawal among others. They were then taken through the consent process by thump printing or signing and verified by a witness before the interviewer who also signed appropriately to recruit. However, prospective participants were also informed of the study by link nurses at the various ART clinics. Contacts are then made to the lead author to recruit. Seven interviews were conducted in English by the lead author while two were conducted in Daghani by a language expert. As well eight (8) of the interviews were conducted in the hospital in a consulting room in the presence of the interviewer alone and one at the home of the caregiver. During interviews, counsellors at the ART clinic were informed about the interviews and the possible referral for counselling should a participant breakdown. The interviews lasted about 30–60 (average of 47) minutes, were audio-recorded, and complimentary notes were made of the non-verbal communications to enrich the data. After the interviews, debriefs were made to ensure the session has not affected the participants before disengaging. They were given a bar of soap and biscuits as reciprocity for time spent with the researchers.

Data management, analysis and rigour

The audio reordered interviews were listened to several times before verbatim transcription was made. The English interviews by the lead author while the Daghani ones were transcribed back-to-back by two Daghani language experts to ensure meaning were not lost before translation finally to English. The biographic data were also entered into a word document, collated and named. Transcribed interviews and biographic data were then given familiar file naming and stored on a pen drive and Personal Computer (PC) under password and only accessible to the research team. Data analysis was conducted by GAA, TG and TTL manually according to the ideals of Collaizi analysis of phenomenological interviews, concurrently during data collection. We followed the seven iterative steps of Collaizi below Fig 1 to analyze the data.
Fig 1

Collaizi steps used to analyze data.

During the presentation of the results, we used quotations from the participants to make emphasis and used false names to ensure confidentiality and anonymity. To ensure the quality and trustworthiness of the study, Lincoln and Guba’s [28] dimensions were used. As such peer debriefs, member checks (credibility), audit trail (dependability) and bracketing of prior pre-suppositions, inter-coder reliability (confirmability) and thick descriptions of the setting, protocols and transactions were made (transferability). The tool was checked for reliability by perfecting it with the conduct of a pilot at a hospital outside the metropolis. This was to check the; wording, comprehension, reliability and accuracy of the interview guide to elicit the right responses for the phenomena.

Ethical consideration

We obtained institutional permission from the Tamale Teaching Hospital- Institutional Review Board and the Northern Regional Health Directorate-Tamale first. Ethical clearance was obtained from the Committee on Human Rights, Publication and Ethics (CHRPE) of Kwame Nkrumah University of Science and Technology and Research Development Division of Ghana Health Service with approval numbers (CHRPE/AP/407/19) and (GHS-ERC 051/05/19) respectively in May 2019. This current study is part of a larger project titled “Experiences of Caregivers of Children Living with HIV/AIDS in Tamale Metropolis-Ghana”. After obtaining ethical clearance, the hospital’s management and ART clinic in charge were notified before data collection began. During data collection, all participants were duly taken through the full disclosure process before consent by thumb-printing or signing before a witness.

Results

Participant information

A total of 9 caregivers were involved in this study, comprising seven (7) females PLWHA and (2) HIV- males. Table 1 below, shows all the seven females PLWHA were caring for their biological child while the males were caring for family members other than biological. The ages of the caregivers range from 24–48 years, with an average of 38. Four (4) of them were not engaged in any economic activity, three (3) were involved in self-employment (laundry, seamstress and petty trading) which did not provide regular income while just two (2) were gainfully employed.
Table 1

Participant information.

CaregiverSexAgeHIV-statusOccupationRelationship with child
Caregiver -1Female24+Self-employedParent
Caregiver -2Male41-Private employmentUncle
Caregiver -3Female40+UnemployedParent
Caregiver -4Female36+UnemployedParent
Caregiver -5Male26-UnemployedSister
Caregiver -6Female44+Government employeeParent
Caregiver -7Female48+UnemployedParent
Caregiver -8Female42+Self-employedParent
Caregiver -9Female37+Self-employedParent
Table 2 below shows six of the children were females and three males. Their average age was 9 years (range from 5–12 years) and had been on the program averagely for 4 years. All these children were attending school; nursery (2), primary (5) and Junior High School (2).
Table 2

Biographic data of children living with HIV/AIDS.

Pseudo nameAge (years)SexLevel of educationHow long been on ART (years)
CLWHA-1 5FemaleNursery 21
CLWHA-2 9MalePrimary 33
CLWHA-3 12FemaleJunior High School 26
CLWHA-4 12MalePrimary 37
CLWHA-5 11FemalePrimary 61
CLWHA-6 10MaleJunior High School 18
CLWHA-7 11FemalePrimary 53
CLWHA-8 7FemalePrimary 24
CLWHA-9 5FemaleNursery 23

Core themes

Six themes were realised from the analysis of transcribes as shown in Table 3 below. These were; denial of HIV/AID diagnosis, stock-outs and privacy at the clinic, food insecurity and poor support, ignorance and alternative herbal cure, stigma and discrimination, transportation and distance. These perceived barriers caregivers maintained were faced by themselves as well continually but for their determination to ensure their children have good health. These have been expressed in the narrations of the caregivers.
Table 3

Summary of themes.

No.Theme
1Denial of HIV/AID diagnosis
2Stock-outs and privacy at the clinic
3Busy schedules and Poor Support
4Ignorance and Alternative Herbal Cure
5Stigma and Discrimination
6Transportation and Distance

Theme one: Denial of HIV/AID diagnosis

Caregivers express the fear surrounding the disease made it difficult for others to accept the diagnosis. Hence, their inability to come to terms with going to the ART clinic for medications. The following are narrations of caregivers; “they easily get to a time they think the disease, as to how me in this state so like my late brother’s wife like this she just gave up completely” (Caregiver -2, M, 41 years, HIV-, other) “Some don’t believe the disease is true and refuse to accept the diagnosis” (Caregiver -8, F, 42 years, PLWHA, Parent).

Theme two: Stock-outs and privacy at the clinic

ART stock-outs were mentioned as a problem with ARVs (especially the pediatric doses) which made the caregivers not adhere to appointments. Aside from one of the sites which had a separate ART clinic away from the facility’s main structures, the other sites’ ART clinics had privacy issues. In one it was located at the main Out-Patient Department (OPD) and the other at Ante-Natal Clinic (ANC) closer to the hospital administration. These are expressed as the following; Caregiver -2, (M, 41 years, HIV-, other) lamented, “So sometimes they may run-short of the quantity they give them for a duration at the counselling centre, they come home and hang” And with privacy concerning the child’s late mother, Caregiver-2 explained, “As the mother started with (hospital B), before we realized she moved to (Town Z-Hospital) to take, is like (Town Z-Hospital) was more accessible and more private” Then with his current difficulty that he felt may deter other caregivers he has this to say, “.. sometimes when I go to the counselling unit to take the drugs if not because am determined and you sit at the waiting side some of them, they don’t feel comfortable looking you, see others turning” Others recanted also as below for privacy and medication supply problems “Also, disrupted medicine supply makes them go and not come back again, due to low stocks so, they should help for the children medicine to always be there enough” (Caregiver -4, F, 36 years, PLWHA, Parent) “Last time I came and they said there is no medicine, and mostly the medicine will be expired and we have to take the expired ones. I have to take the expired medicines since there are no new ones. …Others too when they are coming, they think they know some people who may see them” (Caregiver -9, F, 37 years, PLWHA, Parent)

Theme three: Busy schedules and poor support

Again, this theme borders on the inability of caregivers to make time to come for ART appointments due to busy schedules. It is further compounded by poor support to help take these CLWHA for ART service when the primary caregivers are indisposed, sick or unable to. The following confirms their perceived barriers with busy schedules and poor support. “Sometimes they don’t have time or for the children, they may not have someone to come for the medication (thus) they may be busy and may not get time to come for the medication. And the child like this one can’t come by herself for the medication if not someone who brings her” (Caregiver -1, F, 24 years, PLWHA, Parent). “They look at the time they will go and waste there and the people will speak to them, they don’t like, l don’t have time” (Caregiver -2, M, 41 years, HIV-, other) “Others are weak and can’t walk here or even move around and don’t have support at home” (Caregiver -6, F, 44 years, PLWHA, Parent). On support to help take CLWHA for appointment a caregiver shared, “Some has not informed their family for them to support and maybe coming to the hospital every month, others will ask why they are coming like that and because they don’t want to disclose, they will soon stop coming” (Caregiver -8, F, 42 years, PLWHA, Parent).

Theme four: Ignorance and alternative herbal cure

This theme shows some caregivers have misconceptions and ignorance about the treatment and management modalities of HIV. It then bars them from cultivating healthy health-seeking behaviours but relying on faked alternative herbal care. This becomes a challenge and served as a barrier for CLWHA gaining the benefits of ARVs. They reported; “I will say is lack of education, most of them are not educated and they don’t know the results of how it will end if they’re not taking the medicines” (Caregiver -3, F, 40 years, PLWHA, Parent). “Some caregivers believe those who say they have the cure to the disease so they go there and don’t come here that may be what is preventing most of the people. … I don’t know how someone can convince me to take such herbal medicine. Herbal medicine can’t cure this disease” (Caregiver -9, F, 37 years, PLWHA, Parent). “others too, do not know the importance of the medicine” (Caregiver -4, F, 36 years, PLWHA, Parent). “Some I don’t know but they feel like is waste of time. Like they don’t have time to come for the medications” (Caregiver -5, M, 41 years, HIV-, other).

Theme five: Stigma and discrimination

Many caregivers expressed the concerns of stigma and discrimination as a barrier to some not attending the ART clinics for medication. As such the fear of seeing known faces, being asked why the frequent hospital visits and being labelled were a barrier. The under-listed quotations provide emphasis on this theme. “Because they don’t want people to know, because of the stigma they don’t want to come and meet known faces and then after that they will be treated like an outcast (Caregiver -6, F, 44 years, PLWHA, Parent). “Some of them feel shy to bring the children because they don’t want people to know they’re sick of this condition for them to make fun of them. Because people will just spread it” (Caregiver -7, F, 48 years, PLWHA, Parent). “Some too, are afraid to come and see others here” (Caregiver -4, F, 36 years, PLWHA, Parent).

Theme six: Transportation and distance

Cost of transport and distance caregivers bemoaned can become a barrier to many caregivers who want to come for the medication for their CLWHA, even if they were willing to adhere. They expressed lamentations about having to walk a long distance to the clinic. Caregivers narrated the following; “The problem is money to come here is a big challenge because for me any little that I get I make sure that the month they have given us if even it is coins, I will save it to come” …. Also, the distance is sometimes a problem (Caregiver -3, F, 40 years, PLWHA, Parent). “Others too don’t have money to take a taxi for the fare. I use to meet people here who complain that they walked here and they don’t have the support to come here” (Caregiver -6, F, 44 years, PLWHA, Parent) “Sometimes the money for transport is a problem sometimes. For me sometimes I hold my bag and walk here with her” (Caregiver -9, F, 37 years, PLWHA, Parent)

Discussion

Our study explored perceived barriers to ART enrollment and adherence for caregivers of children living with HIV/AIDS. The study enquired from caregivers who were visiting the clinics with their children for treatment why others are unable to honour their appointments and also ensure their children adhere to the regimen. The adherence of CLWHA to ART appointments ensures continual monitoring, decreases viral resistance and viral load, and positively impacts the quality of life. Caregivers in this study underscored the importance of adhering to ARVs however, expressed barriers deter others from coming for treatment. They further explained they also do go through some of these problems in a bid to ensure their children get their medications. In this study caregivers identified the following as barriers to CLWHA ART enrollment and adherence; denial of HIV/AID diagnosis, stock-outs and privacy at the clinic, busy schedule and poor support, ignorance and alternative herbal cure, stigma and discrimination, cost of transportation long-distance dance. The current study is largely consistent with barriers identified by PLWHA ART initiation in Kenya [29] on stigma, denial of diagnosis and difficulty in obtaining refills of ARVs(stock out) but not side effects of the medications. The similarity is because of the inadequate supply of ARVs as well as fear and misconceptions about HIV/AIDS in Africa. However, because CLWHA is unable to express themselves well on the side effects as compared to adults’ caregivers did not mention side effects as a barrier to enrollment and adherence in this study. It is therefore important for the government to ensure an adequate supply of ART stocks for PLWA, especially pediatric doses. The use of expired ARVs in this study shows the precarious nature of stock-outs in many African settings and calls for conscious efforts to desist from the act. Caregivers’ expression of denial or non-acceptance of HIV status and stigma in this study also concord with a significant barrier among non-adherent adolescents living with HIV in Botswana [18]. However, in contrast to this current study food insecurity and side effects of the medications were also reported as barriers in Kenya. The denial of diagnosis shows a grave concern for HIV care as adherence to interventions becomes a serious threat. This undermines the health-seeking behaviour of caregivers for children. Re-enforcement of adherence counselling is pivotal to curb this worrying scenario. Findings also reflect PLWH in rural Zambia [30] and Gaza [31] where caregivers experienced barriers to clinic attendance relating to time and distance to the ART clinic and the cost of transportation. This similarity explains the less accessibility of PLWH to ART centres. Even though the treatment is free in Ghana, PLWH has to move long distances to access the treatment. Especially in this metropolis where only three facilities provide ART Services. As other facilities do the counselling and testing and refer to these three facilities making PLWH move long distances to access ARVs. As well due to work, sickness and other roles caregivers engages in its difficult to get time to attend ART appointment. However, this study is counter-intuitive to a study in rural Gaza [31] where lack of confidence in the national health system was mentioned as a barrier. The difference, however, could be because this current study was conducted in an urban area. Maccarthy et al. identified the inability to buy food, the burden of taking multiple medications, school attendance, and limiting privacy as barriers in Uganda among adolescents living with HIV/AIDS which contrast this current study. Caregivers in this study did not see pill burden and school attendance as barriers and provide great relief as many PLWHA are not citing this as a barrier. But agrees with poor family support due to unreliable constant change in guardianship because they had lost their biological parents to HIV. With many caregivers keeping CLWHA status a secret, it is difficult for other people to help with clinic appointments and ARV administration in their absence. This calls for collective deliberations and support for home care that involves significant others of CHLWA. The current study also contrasts a study conducted in Vietnam [32] where there exist poor linkage between HIV voluntary testing and care and treatment services, poor confidentiality and inadequate HIV/AIDS specialist were identified as structural barriers to ART initiation. The current study does not have confidentiality and poor coordination of testing and treatment as a concern. Health care providers need to maintain their positive conduct to PLWHA, to ensure PLWHA feel positive about coming to the clinics for medication, adherence counselling and health education. Familiarity is found in this study to believe in alternative herbal cures but not fear of side effects of treatment and substance misuse identified in rural KwaZulu-Natal, South Africa [17]. Where it was identified, many were testing knowing their status but not enrolling on the ART program to treat. Belief in alternative herbal and faith practitioners is common in African settings and possess a serious threat to HIV interventions. The need to extend education to these religious leaders, priests, herbal and alternative herbal practitioners to demystify HIV cure is pivotal. Substance abuse was not mentioned in this study as a barrier probably because a majority of the caregivers were females. As has been reported in a previous survey conducted in Low and middle-income countries where alcoholism was strongly associated with the male gender [33]. Also, the setting of this current study is a predominantly Muslim society where the abuse of substances such as alcohol and illicit drugs is frowned upon. Our current study is familiar with [23] in Southern Ghana where barriers to ART centred on the high financial burden associated with accessing and receiving ART, shortage of ARVs and treatment of opportunistic infections, stigma, and long-distance to treatment centres. However, inconsistent with barriers such as delays associated with receiving care from the treatment centres, fear of side effects of ARVs, and job insecurity arising from a regular leave of absence to receive ART. This similarity shows an in-country indirect cost for ART appointments, stigma and frequent shortage of ARVs. It creates a difficult situation for proper adherence for PLWH in Ghana, especially for dependent children. Differences in job security come as a result of many of the caregivers being unemployed or undertaking self-jobs. There were no complaints of long queues and stay at the hospital due to the low prevalence of HIV/AIDS in Northern Ghana compare to the south. Ankomah et al. [34] corroborate the position of this current study where the mere presence of a person at the HIV counselling clinic is enough for the person to be labelled as or suspected to be an HIV patient. Indicating a high perception of stigmatization which serve as a barrier to ART. The study further contrasts their finding of PLWH citing the quality of care given by some health workers and conducts that breached confidentiality about their clients’ health status as barriers in this metropolis. This may compel many patients and potential users of ART clinic services not to patronize services. We recommend that future studies explore barriers from non-adherent CLWHA caregivers. Active involvement of significant others in-clinic appointments by care providers is highly recommended in this study. Health care facilities together with the ministry should ensure adequate stocks of ARVs. Faith and alternative herbal practitioners should be educated to demystify notions of curing HIV. Incentives for adherent mothers as a way of motivation for other caregivers will be a significant factor to reduce the attrition of CLWHA on ART. We also recommend home visits as crucial to medication adherence. During these visits the stocks of medications could be replenished, health education given and sound interventions made based on an assessment of the home environment. Likewise, telehealth interventions such as sending mobile messages as reminders for appointments and information on ARVs are highly suggested.

Strength and limitations

Our study, being the first to explore such an important aspect of CLWHA intervention allowed for starting of a discourse that will improve their health outcomes. The approach of the study allowed for deep-seated narrations of the perceived barriers caregivers goes through to adhere to ART appointment. Our study is limited by language (English and Daghani), exclusion of caregivers of children who were not on ART and the inability to collect views of the care providers about the possible barriers as well. Despite these limitations, the findings of this study are valid for the ongoing discussion on the barriers to ART.

Conclusion

Ghana among its sister countries in Africa has strived to improve health coverage with the implementation of the CHPS program. Affordability of health care to vulnerable groups such as children, women and the elderly has been at the centre of health policy. Introduction of free maternal health care, National Health Insurance Scheme and among provident interventions in making health affordable to citizens. Since the first case of HIV was reported in this republic, the government has ensured free voluntary screening and testing of HIV/AIDS, enrollment in ART, and prevention campaigns among others. Yet there exist multi-dimensional barriers to ART in Ghana, especially among hard-to-reach populations like children. Perceived barriers to ART and adherence are multifaceted, encompassing caregiver, child, healthcare provider and facilities factors. Caregivers recognize the ultimate importance of honouring clinic appointments and the improvement in CLHA health with ARVs. They profess to encounter perceived barriers others face. These barriers border on; denial of diagnosis, stock out, poor privacy, cost of transportation, long distances to the clinics, stigma, busy schedules, poor support, ignorance of the condition and belief in alternative herbal medicines. They can navigate these challenges due to resilience and need to ensure their CLWHA are healthy.

Interview guide.

(DOCX) Click here for additional data file.

Transcript.

(DOCX) Click here for additional data file. 3 Dec 2021
PONE-D-21-21063
Some Believe those who say they can Cure it” Perceived Barriers to Antiretroviral Therapy for Children Living with HIV/AIDS: Qualitative Exploration of Caregivers Experiences in Tamale Metropolis
PLOS ONE Dear Dr. Atanuriba, Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process. Firstly we would like to apologies for the delays faced on your submission and  thank you for your patience. The manuscript has been evaluated by two reviewers, and their comments are available below. The reviewers have requested some additional  points for further clarification. In particular they requested information on the rational behind the approach used for qualitative interviewing, as well as details on how data saturation was determined. Finally, the reviewers feel that copy editing can further improve the manuscript. In particular please amend your manuscript to adhere to our submission guidelines with respect to language describing demographic groups. Outmoded terms and potentially stigmatizing labels should be changed to more current, acceptable terminology. Specifically, we recommend that “HIV positive” should be changed to more appropriate term(s). Please note that PLOS ONE cannot provide copyediting for manuscripts. Could you please carefully revise the manuscript to address all comments raised? Please submit your revised manuscript by Jan 16 2022 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file. Please include the following items when submitting your revised manuscript:
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For instructions see: https://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols. Additionally, PLOS ONE offers an option for publishing peer-reviewed Lab Protocol articles, which describe protocols hosted on protocols.io. Read more information on sharing protocols at https://plos.org/protocols?utm_medium=editorial-email&utm_source=authorletters&utm_campaign=protocols. We look forward to receiving your revised manuscript. Kind regards, Lucinda Shen, MSc Staff Editor PLOS ONE Journal Requirements: When submitting your revision, we need you to address these additional requirements. 1. Please ensure that your manuscript meets PLOS ONE's style requirements, including those for file naming. The PLOS ONE style templates can be found at https://journals.plos.org/plosone/s/file?id=wjVg/PLOSOne_formatting_sample_main_body.pdf and https://journals.plos.org/plosone/s/file?id=ba62/PLOSOne_formatting_sample_title_authors_affiliations.pdf 2. Please include a copy of the interview guide used in the study, in both the original language and English, as Supporting Information, or include a citation if it has been published previously. 3. We note that you have indicated that data from this study are available upon request. PLOS only allows data to be available upon request if there are legal or ethical restrictions on sharing data publicly. For more information on unacceptable data access restrictions, please see http://journals.plos.org/plosone/s/data-availability#loc-unacceptable-data-access-restrictions. In your revised cover letter, please address the following prompts: a) If there are ethical or legal restrictions on sharing a de-identified data set, please explain them in detail (e.g., data contain potentially sensitive information, data are owned by a third-party organization, etc.) and who has imposed them (e.g., an ethics committee). 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Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. Reviewer #1: Partly Reviewer #2: Yes ********** 2. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: Yes Reviewer #2: N/A ********** 3. Have the authors made all data underlying the findings in their manuscript fully available? The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified. Reviewer #1: Yes Reviewer #2: Yes ********** 4. Is the manuscript presented in an intelligible fashion and written in standard English? PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here. Reviewer #1: No Reviewer #2: Yes ********** 5. Review Comments to the Author Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #1: The authors use a qualitative exploration to understand the barriers to ART enrolment and adherence among children living with HIV/AIDS in the Tamale Metropolis in the era of the ‘treat all’ policy, from the perspectives of the caregivers. Denial of HIV/AIDS diagnosis, stock-outs and privacy at the clinic, busy schedule and poor support, ignorance and alternative herbal cure, stigma and discrimination, and transportation and distance emerged as barriers to ART enrolment and adherence. Findings from the study provide useful insight into the barriers to ART adherence among children that could be addressed, especially, at the health facility level to improve adherent to therapy among children living with HIV. However, I have some major concerns about the research methodology, results, discussion and conclusions that need to be addressed before the manuscript can be published: Methods 1. On page 9, the authors state, ‘Owing to the varied biographic background (age, sex, and religion) of the caregivers which did not favour focused group discussion’, as a reason for opting for in-depth interviews. However, focus group discussions (FGDs) can also be categorised according to the different participants’ characteristics to achieve a homogeneous group for a balanced discussion. By itself, this may not be a justifiable reason for choosing in-depth interviews over FGDs, and the authors should clarify if there were any other reasons besides that. 2. Could the authors give more details about how data saturation was determined. Was iteration considered in the data collection and analysis to guide this process? Results 3. The term ‘HIV positive’ is generally considered stigmatizing and ‘people living with HIV’ is preferred. The authors should edit this throughout the manuscript. 4. From the illustrative quotes presented, stock-outs and privacy at the clinic relate to two different barriers. Why did the authors choose to organise these under the same theme? 5. On page 15, under theme two, the authors report, ‘Aside one of the sites which has a separate ART clinic away from the facility main structures, the other sites ART clinic had privacy issues. In one it was located at the main Out-Patient Department (OPD) and the other at Ante-Natal Clinic (ANC) closer to the hospital administration.’ Was this reported by the caregivers or was it an assessment made by the authors through observation? Data collector observation may not necessarily reflect the perceptions of the caregivers and is not covered under the stated data collection methods. Discussion 6. On page 21, Paragraph 1, the authors make the conclusion that because confidentiality and poor coordination of testing and treatment were not identified as barriers in this study, unlike findings in previous studies, ‘there exist properly trained counsellors and HIV professional providing services’ and that ‘This contrast underpins better professional ethics and conduct of care providers in this metropolis.’ However, this assumption may not hold and it is not supported by findings of the study. 7. In paragraph 2, the authors also write that, ‘Substance abuse was not mentioned in this study as a barrier because a majority of the caregivers were females.’ It may be useful to explain how gender is related to alcohol use and present supporting references. Strengths and limitations 8. The authors pose sample size as a limitation of the study. However, if sampling was done until data saturation was reached, as reported, this ought not to be a concern. How do the authors think having a larger sample size would have improved the study? 9. Wouldn’t it have been useful to also include caregivers of children who were not on ART to explore barriers to ART enrolment? The authors could consider including this as a limitation of the study. Conclusions 10. In the last statement, the authors conclude that, the caregivers ‘are able to navigate these challenges due to resilience and need to ensure their CLWHA are healthy’. This however does not seem derived from the study findings. There were also a few minor issues: Background 1. Some references for statistics cited are not provided for example in the last paragraph on Page 4 and first paragraph on page 5. Methods 2. Were the caregivers required to speak both English and Daghani or either of the two. Please clarify on Page 8. 3. On page 9, was the presence of a witness during the consenting process a requirement for all participants, including those who could read and write? Results 4. For Tables 1 and 2: a) It may be better to write in full female and male, instead of F and M, or give a key at the bottom of the table b) Unemployed may be a better term to use than ‘Nill’ under occupation. c) It would be good to specify what the ‘other’ under ‘relationship to the child’ is for. 5. The authors in the first paragraph on Page 12 write that, ‘three (3) [of the caregivers] involved in self-employment (laundry, seamstress and petty trading) which does not provide regular income’. Was the conclusion that these occupations do not provide regular income made by the authors based on the nature of the work or was this self-reported by the caregivers? Discussion 6. Some of the referencing needs formatting, for example, in the first sentence in paragraph 1 on page 22. 7. Some statements are incomplete, for example, the second last paragraph on page 22, ‘Active involvement of significant others in clinic appointment by care providers.’ Generally, language editing is recommended for the entire manuscript to improve readability. Reviewer #2: Review Overall Great study, very interesting findings. I think the part about herbal / traditional is very important in the Ghanian context, so I found that particularly interesting. Some of the sentences could be restructured to be more concise or clear. For example, the minutes of interviews were 47, this would be better structured as “The interviews lasted an average of X minutes.” which is more active and clearer. I would recommend doing a read outloud to find small structure issues like this. I would like to understand better what is unique about this study compared to other similar studies. I would like a better understanding of the context and population and how this study makes a unique contribution. This is not quite clear to me now, but there is much potential here. I think expanding on Tamale and the population would help. Did religion come up at all? I know Northern Ghana is largely muslim so I wondered if any sort of religious factors arose? Abstract This is minor but there are some typos in the abstract which take away from the quality of the work. For example, “there exist” should be “there exists”. “HIV and AIDS” is later referred to as “HIV/AID”. I would make this consistent throughout. The abstract is a bit long/unbalanced-- the background is very long whereas the results are short. Ethics Statement Do not need to say the second “respectively”. Title I would remove the capitalizations from Cure and Believe in the title, as it is a quote. It would potentially be better to be consistent about capitalization in the whole title. Introduction Pick HIV and AIDS rather than saying it that way sometimes, and other times using HIV/AIDS. I would recommend the latter. Some citations are missing in the first few sentences of the introduction. For example, for “as many more infected are having their quality and expectancy of life improving.” “diseases of history have exerted systematic and structural effects”. My same comment about sentence structure is relevant in the introduction. For example, the sentence “Evidence from Ghana shows CLWHA (0–14 years) are about 25,955(8%) with an estimated 2,972(15%) new infections and 2,441 (18%) deaths.” should be something more like, “In Ghana, there are 25,955 0-14 year olds (8%)...” to make it more active and clear. Methods “Fathered by Husserl the meaning and essence people have about a phenomenon is described while making sure presuppositions are bracketed(25)” I don’t understand this sentence and generally the first paragraph. Can it be explained in a less jargony fashion? First sentence about Tamale is missing a citation Which hospitals were selected? Name them The sentence “The hospitals which serve as training centers for students, provides in-patient and out-patient care services” should be re-phrased. “The hospital has a training center for student, inpatient care services, and outpatient care services.” “Their exposition of the phenomena perceived barriers because they were asked, what are some of the reasons that prevent other caregivers from bringing their CLWHA to the ART clinics for treatment?” Is this the only question that was asked? Could you include the questionnaire with the paper? This sentence seems out of place given the Instrument Section exists. The steps of Colaizi could be better presented in a figure or a chart of some kind rather than in a dense paragraph. Add citations for Colaizi and Lincoln and Guba Don't understand this sentence please rephrase “Haven obtained ethical clearance the hospital management and ART clinic in charges were notified before data collection began” Results Good summary of participants! I like the presentation of themes Discussion These sentences are missing something in the beginning, I guess an author name: “(15) identified inability to buy food, the burden of taking multiple medications and school attendance limiting privacy as barriers in Uganda among adolescence living with HIV/AIDS which contrast this current study” “33) corroborates the position of this current study when it was noted that the mere presence of a person at the HIV counselling clinic is enough for the person to be labelled as or suspected to be an HIV patient. Indicating a high perception of stigmatization which serve as a barrier to ART.” Some of the studies it is compared to could be summarized, rather than a separate sentence about all of them The last paragraph before strengths and limitations could be expanded, especially if the other literature is summarized a bit more concisely. I would expand on these recommendations and consider grounding them in other studies which have shown these suggestions have been successful elsewhere. ********** 6. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files. If you choose “no”, your identity will remain anonymous but your review may still be made public. Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy. Reviewer #1: No Reviewer #2: Yes: Aldina Mesic [NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.] While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org. Please note that Supporting Information files do not need this step. Submitted filename: Plos 1 Review 29 Nov.docx Click here for additional data file. 31 Mar 2022 “SOME BELIEVE THOSE WHO SAY THEY CAN CURE IT” PERCEIVED BARRIERS TO ANTIRETROVIRAL THERAPY FOR CHILDREN LIVING WITH HIV/AIDS: QUALITATIVE EXPLORATION OF CAREGIVERS EXPERIENCES IN TAMALE METROPOLIS Following reception of reviewers comment of the above, the authors provides the understated response Reviewer 1 Comment: n page 9, the authors state, ‘Owing to the varied biographic background (age, sex, and religion) of the caregivers which did not favour focused group discussion’, as a reason for opting for in-depth interviews. However, focus group discussions (FGDs) can also be categorised according to the different participants’ characteristics to achieve a homogeneous group for a balanced discussion. By itself, this may not be a justifiable reason for choosing in-depth interviews over FGDs, and the authors should clarify if there were any other reasons besides that Response: Comment acknowledged and further explanations provided comment: Could the authors give more details about how data saturation was determined. Was iteration considered in the data collection and analysis to guide this process? response: Yes, iteration was considered and we have provided further information on saturation comment: The term ‘HIV positive’ is generally considered stigmatizing and ‘people living with HIV’ is preferred. The authors should edit this throughout the manuscript response: Comment acknowledged and corrections made comment: From the illustrative quotes presented, stock-outs and privacy at the clinic relate to two different barriers. Why did the authors choose to organise these under the same theme? response: We recognized both barriers as related to facility/hospital level barriers. As such put them together comment: On page 15, under theme two, the authors report, ‘Aside one of the sites which has a separate ART clinic away from the facility main structures, the other sites ART clinic had privacy issues. In one it was located at the main Out-Patient Department (OPD) and the other at Ante-Natal Clinic (ANC) closer to the hospital administration.’ Was this reported by the caregivers or was it an assessment made by the authors through observation? Data collector observation may not necessarily reflect the perceptions of the caregivers and is not covered under the stated data collection methods. response: Comment acknowledged however, caregivers narrated how the proximity of the clinics to OPD and administration made it easy for others to identify them as PLWHA during our final step of data validation (member checks) The introduction of adding such information is to make it much clearer for readers. comment: On page 21, Paragraph 1, the authors make the conclusion that because confidentiality and poor coordination of testing and treatment were not identified as barriers in this study, unlike findings in previous studies, ‘there exist properly trained counsellors and HIV professional providing services’ and that ‘This contrast underpins better professional ethics and conduct of care providers in this metropolis.’ However, this assumption may not hold and it is not supported by findings of the study. response: Upon a careful consideration, this portion has been deleted from the manuscript. comment: In paragraph 2, the authors also write that, ‘Substance abuse was not mentioned in this study as a barrier because a majority of the caregivers were females.’ It may be useful to explain how gender is related to alcohol use and present supporting references. response: The relationship between gender and alcohol abuse has been explained and referenced comment: The authors pose sample size as a limitation of the study. However, if sampling was done until data saturation was reached, as reported, this ought not to be a concern. How do the authors think having a larger sample size would have improved the study? response: We accept the comment and do, delete same, Thank you comment: Wouldn’t it have been useful to also include caregivers of children who were not on ART to explore barriers to ART enrolment? The authors could consider including this as a limitation of the study. response: Suggestion accepted and added to the limitations comment: In the last statement, the authors conclude that, the caregivers ‘are able to navigate these challenges due to resilience and need to ensure their CLWHA are healthy’. This however does not seem derived from the study findings response: The nature of these perceived barriers shows these caregivers equally faces same. Its therefore their resolve to adhere to medications that makes them navigate these barriers comment: Some references for statistics cited are not provided for example in the last paragraph on Page 4 and first paragraph on page 5. response: The said references have been provided. comment: Were the caregivers required to speak both English and Daghani or either of the two. Please clarify on Page 8. response: They were required to speak either of the two. Amends made. comment: On page 9, was the presence of a witness during the consenting process a requirement for all participants, including those who could read and write? response: Yes, please it was required for all comment: It may be better to write in full female and male, instead of F and M, or give a key at the bottom of the table. Unemployed may be a better term to use than ‘Nill’ under occupation, It would be good to specify what the ‘other’ under ‘relationship to the child’ is for response: Comment accepted and corrections made comment: The authors in the first paragraph on Page 12 write that, ‘three (3) [of the caregivers] involved in self-employment (laundry, seamstress and petty trading) which does not provide regular income’. Was the conclusion that these occupations do not provide regular income made by the authors based on the nature of the work or was this self-reported by the caregivers? response: Please it was self-reported comment: Some of the referencing needs formatting, for example, in the first sentence in paragraph 1 on page 22 response: Reference formatted as suggested comment: Some statements are incomplete, for example, the second last paragraph on page 22, ‘Active involvement of significant others in clinic appointment by care providers.’ Generally, language editing is recommended for the entire manuscript to improve readability. response: Comment acknowledged Sentence completed reviewer 2 comment: Some of the sentences could be restructured to be more concise or clear. For example, the minutes of interviews were 47, this would be better structured as “The interviews lasted an average of X minutes.” which is more active and clearer. I would recommend doing a read outloud to find small structure issues like this. response: Language and other editing has been made throughout the entire script comment: I would like to understand better what is unique about this study compared to other similar studies. response: Our study is unique compared to others, because it explored barriers from caregivers who had enrolled their children on ART and were adhering to appointments. Thus enquiring from them why other caregivers were not enrolling and/or adhering to appointment. This is taken from the context that in ghana ART coverage is 46.55% among adults (15+ years), 53.76% women (15+ years) and just 25.55% children (0-14years). For children living with HIV/AIDS their caregivers are the most critical people in their lives since they are dependent. Our study also contrast other studies that explores barriers to ART among adults comment: I would like a better understanding of the context and population and how this study makes a unique contribution response: Context is taken from the premise that in Ghana ART coverage is 46.55% among adults (15+ years), 53.76% women (15+ years) and just 25.55% children (0-14years). As such nearly a seventh of children living with HIV/AIDS are not enrolled unto ART compared to a much better statistic for adults and women. Yet, the power of making this very important decision lies in the hands of adults. To this end since ability to recruit caregivers of children living with HIV/AIDS not enrolled and /or adherent was difficult, we approached caregivers of adherent children. This was to explore their “perceived” reasons why other caregivers refuse to enroll their children and /or adhere to appointments. The findings provide unique knowledge about barriers to ART which are also confronted by adherent caregivers. Thereby providing provident solutions that are useful for both categories of caregivers in the metropolis. comment: This is not quite clear to me now, but there is much potential here. I think expanding on Tamale and the population would help. response: Indeed, we recognize so But in this study we purposively selected facilities with ART clinics for this study. comment: Did religion come up at all? I know Northern Ghana is largely muslim so I wondered if any sort of religious factors arose? response: Yes, it did come up But was not strongly attached to any of the faiths as reviewer sought to know comment: This is minor but there are some typos in the abstract which take away from the quality of the work. For example, “there exist” should be “there exists”. “HIV and AIDS” is later referred to as “HIV/AID”. I would make this consistent throughout. The abstract is a bit long/unbalanced-- the background is very long whereas the results are short. response: Thank you for your comment Amends has been made comment: Do not need to say the second “respectively”. I would remove the capitalizations from Cure and Believe in the title, as it is a quote. It would potentially be better to be consistent about capitalization in the whole title. Pick HIV and AIDS rather than saying it that way sometimes, and other times using HIV/AIDS. I would recommend the latter. response: Comment acknowledged and corrections made comment: Some citations are missing in the first few sentences of the introduction. For example, for “as many more infected are having their quality and expectancy of life improving.” “diseases of history have exerted systematic and structural effects”. response: References has been provided comment: My same comment about sentence structure is relevant in the introduction. For example, the sentence “Evidence from Ghana shows CLWHA (0–14 years) are about 25,955(8%) with an estimated 2,972(15%) new infections and 2,441 (18%) deaths.” should be something more like, “In Ghana, there are 25,955 0-14 year olds (8%)...” to make it more active and clear. Fathered by Husserl the meaning and essence people have about a phenomenon is described while making sure presuppositions are bracketed(25)” I don’t understand this sentence and generally the first paragraph. Can it be explained in a less jargony fashion? response: Comment acknowledged and amends made comment: First sentence about Tamale is missing a citation response: Reference provided comment: Which hospitals were selected? Name them response: Amends made and hospitals named comment: The sentence “The hospitals which serve as training centers for students, provides in-patient and out-patient care services” should be re-phrased. “The hospital has a training center for student, inpatient care services, and outpatient care services.” response: Comment acknowledged and amends made comment: Their exposition of the phenomena perceived barriers because they were asked, what are some of the reasons that prevent other caregivers from bringing their CLWHA to the ART clinics for treatment?” Is this the only question that was asked? Could you include the questionnaire with the paper? This sentence seems out of place given the Instrument Section exists. response: The interview guide has been included And some of the probes added to the text comment: The steps of Colaizi could be better presented in a figure or a chart of some kind rather than in a dense paragraph. response: Comment acknowledged and the sentences has been put into a figure (1) comment: Add citations for Colaizi and Lincoln and Guba response: Reference provided comment; Don't understand this sentence please rephrase “Haven obtained ethical clearance the hospital management and ART clinic in charges were notified before data collection began” These sentences are missing something in the beginning, I guess an author name: “(15) identified inability to buy food, the burden of taking multiple medications and school attendance limiting privacy as barriers in Uganda among adolescence living with HIV/AIDS which contrast this current study” “33) corroborates the position of this current study when it was noted that the mere presence of a person at the HIV counselling clinic is enough for the person to be labelled as or suspected to be an HIV patient. Indicating a high perception of stigmatization which serve as a barrier to ART.” Some of the studies it is compared to could be summarized, rather than a separate sentence about all of them The last paragraph before strengths and limitations could be expanded, especially if the other literature is summarized a bit more concisely. response: Comment acknowledged and amends made comment: I would expand on these recommendations and consider grounding them in other studies which have shown these suggestions have been successful elsewhere response; The section has been reviewed and more recommendations added base on literature. Yours sincerely Gideon Awenabisa Atanuriba atanuriba@gmail.com +233541186103 Submitted filename: Reviewer response..docx Click here for additional data file. 27 May 2022
PONE-D-21-21063R1
Some Believe those who say they can Cure it” Perceived Barriers to Antiretroviral Therapy for Children Living with HIV/AIDS: Qualitative Exploration of Caregivers Experiences in Tamale Metropolis
PLOS ONE Dear Dr. Atanuriba, Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process. The reviewer requests further clarifications in the discussion, and requests that the manuscript is further copy edited to improve the language quality and readability. 
Please submit your revised manuscript by Jul 10 2022 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file. Please include the following items when submitting your revised manuscript:
If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter. A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'. A marked-up copy of your manuscript that highlights changes made to the original version. You should upload this as a separate file labeled 'Revised Manuscript with Track Changes'. An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'. If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: https://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols. Additionally, PLOS ONE offers an option for publishing peer-reviewed Lab Protocol articles, which describe protocols hosted on protocols.io. Read more information on sharing protocols at https://plos.org/protocols?utm_medium=editorial-email&utm_source=authorletters&utm_campaign=protocols. We look forward to receiving your revised manuscript. Kind regards, Jamie Royle Staff Editor PLOS ONE Journal Requirements: Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice. [Note: HTML markup is below. Please do not edit.] Reviewers' comments: Reviewer's Responses to Questions Comments to the Author 1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation. Reviewer #1: (No Response) ********** 2. Is the manuscript technically sound, and do the data support the conclusions? The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. Reviewer #1: Yes ********** 3. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: Yes ********** 4. Have the authors made all data underlying the findings in their manuscript fully available? The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified. Reviewer #1: Yes ********** 5. Is the manuscript presented in an intelligible fashion and written in standard English? PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here. Reviewer #1: No ********** 6. Review Comments to the Author Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #1: The authors have provided adequate responses to most of the queries and comments. I acknowledge the authors' response to the comment in the discussion section on page 23, paragraph 1. I however suggest that the statement ‘Substance abuse was not mentioned in this study as a barrier because a majority of the caregivers were females’ is changed to ‘Substance abuse was not mentioned in this study as a barrier PROBABLY because a majority of the caregivers were females’ since this is not something stemming from the data. It is merely an assumption the authors are making basing on previous studies. I also recommend that the authors review the manuscript for language, especially in the methods section and discussion, to improve readability. ********** 7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files. If you choose “no”, your identity will remain anonymous but your review may still be made public. Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy. Reviewer #1: Yes: Jacquellyn Nambi Ssanyu [NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.] While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. 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30 Jun 2022 Tamale Central Hospital, Pediatric Department, Post Office Box TL2649, Ghana, Northern Region, Tamale. 30 June, 2022 The Editor, PLOS ONE Journal, Dear Sir, AUTHORS RESPONSE LETTER TO RESEARCH ARTICLE TITLED “SOME BELIEVE THOSE WHO SAY THEY CAN CURE IT” PERCEIVED BARRIERS TO ANTIRETROVIRAL THERAPY FOR CHILDREN LIVING WITH HIV/AIDS: QUALITATIVE EXPLORATION OF CAREGIVERS EXPERIENCES IN TAMALE METROPOLIS We the authors of the above research article under your review, haven received comments for revision do hereby provide the following responses. Reviewer Comment Page Authors response Reviewer 1 I acknowledge the authors' response to the comment in the discussion section on page 23, paragraph 1. I however suggest that the statement ‘Substance abuse was not mentioned in this study as a barrier because a majority of the caregivers were females’ is changed to ‘Substance abuse was not mentioned in this study as a barrier PROBABLY because a majority of the caregivers were females’ since this is not something stemming from the data. It is merely an assumption the authors are making basing on previous studies. 23 Comment acknowledged and revision made as suggested. I also recommend that the authors review the manuscript for language, especially in the methods section and discussion, to improve readability. Throughout the script Thank you for your comment Amends has been made. As the script has been carefully read for language and editing to ensure readability. We also bring to your noticed that none of cited papers have been retracted. Given the time this manuscript has been under review; we humbly request for an expedited action for publication. Is our hope this meet your kind consideration and action. Thank you Yours sincerely Gideon Awenabisa Atanuriba atanuriba@gmail.com +233541186103 19 Sep 2022 Some Believe those who say they can Cure it” Perceived Barriers to Antiretroviral Therapy for Children Living with HIV/AIDS: Qualitative Exploration of Caregivers Experiences in Tamale Metropolis PONE-D-21-21063R2 Dear Dr. Atanuriba, We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements. Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication. An invoice for payment will follow shortly after the formal acceptance. To ensure an efficient process, please log into Editorial Manager at http://www.editorialmanager.com/pone/, click the 'Update My Information' link at the top of the page, and double check that your user information is up-to-date. If you have any billing related questions, please contact our Author Billing department directly at authorbilling@plos.org. If your institution or institutions have a press office, please notify them about your upcoming paper to help maximize its impact. If they’ll be preparing press materials, please inform our press team as soon as possible -- no later than 48 hours after receiving the formal acceptance. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org. Kind regards, AbdulAzeez Adeyemi Anjorin, Ph.D. Academic Editor PLOS ONE Additional Editor Comments (optional): Reviewers' comments: Reviewer's Responses to Questions Comments to the Author 1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation. Reviewer #1: All comments have been addressed ********** 2. Is the manuscript technically sound, and do the data support the conclusions? The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. Reviewer #1: Yes ********** 3. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: Yes ********** 4. Have the authors made all data underlying the findings in their manuscript fully available? The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified. Reviewer #1: Yes ********** 5. Is the manuscript presented in an intelligible fashion and written in standard English? PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here. Reviewer #1: Yes ********** 6. Review Comments to the Author Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #1: I thank the authors for the revision and work on the manuscript. I have no further comments for them. ********** 7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files. If you choose “no”, your identity will remain anonymous but your review may still be made public. Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy. Reviewer #1: Yes: Jacquellyn Nambi Ssanyu ********** 22 Sep 2022 PONE-D-21-21063R2 “Some believe those who say they can cure it” Perceived Barriers to Antiretroviral Therapy for Children Living with HIV/AIDS: Qualitative Exploration of Caregivers Experiences in Tamale Metropolis Dear Dr. Atanuriba: I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department. If your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information please contact onepress@plos.org. If we can help with anything else, please email us at plosone@plos.org. Thank you for submitting your work to PLOS ONE and supporting open access. Kind regards, PLOS ONE Editorial Office Staff on behalf of Dr. AbdulAzeez Adeyemi Anjorin Academic Editor PLOS ONE
  18 in total

1.  Caregivers' Support Network Characteristics Associated with Viral Suppression among HIV Care Recipients.

Authors:  Julie A Denison; Mary M Mitchell; Allysha C Maragh-Bass; Amy R Knowlton
Journal:  AIDS Behav       Date:  2017-12

2.  Depressive symptoms among older caregivers raising children impacted by HIV/AIDS in the Omusati Region of Namibia.

Authors:  Eveline Kalomo; Kyoung Hag Lee; Fred Besthorn
Journal:  Health Care Women Int       Date:  2017-08-29

3.  Self-Stigma Reduction Interventions for People Living with HIV/AIDS and Their Families: A Systematic Review.

Authors:  Polly H X Ma; Zenobia C Y Chan; Alice Yuen Loke
Journal:  AIDS Behav       Date:  2019-03

4.  Barriers to health care in rural Mozambique: a rapid ethnographic assessment of planned mobile health clinics for ART.

Authors:  Amee Schwitters; Philip Lederer; Leah Zilversmit; Paula Samo Gudo; Isaias Ramiro; Luisa Cumba; Epifanio Mahagaja; Kebba Jobarteh
Journal:  Glob Health Sci Pract       Date:  2015-03-05

5.  ART access-related barriers faced by HIV-positive persons linked to care in southern Ghana: a mixed method study.

Authors:  Augustine Ankomah; John Kuumuori Ganle; Margaret Yaa Lartey; Awewura Kwara; Priscilla Awo Nortey; Michael Perry Kweku Okyerefo; Amos Kankponang Laar
Journal:  BMC Infect Dis       Date:  2016-12-07       Impact factor: 3.090

Review 6.  Patient-reported barriers and facilitators to antiretroviral adherence in sub-Saharan Africa.

Authors:  Natasha Croome; Monisha Ahluwalia; Lyndsay D Hughes; Melanie Abas
Journal:  AIDS       Date:  2017-04-24       Impact factor: 4.177

Review 7.  Ghana's HIV epidemic and PEPFAR's contribution towards epidemic control.

Authors:  Hammad Ali; Frank Amoyaw; Dan Baden; Lizette Durand; Megan Bronson; Andrea Kim; Yoran Grant-Greene; Rubina Imtiaz; Mahesh Swaminathan
Journal:  Ghana Med J       Date:  2019-03

8.  Facilitators and Barriers of Antiretroviral Therapy Initiation among HIV Discordant Couples in Kenya: Qualitative Insights from a Pre-Exposure Prophylaxis Implementation Study.

Authors:  Rena C Patel; Josephine Odoyo; Keerthana Anand; Gaelen Stanford-Moore; Imeldah Wakhungu; Elizabeth A Bukusi; Jared M Baeten; Joelle M Brown
Journal:  PLoS One       Date:  2016-12-08       Impact factor: 3.240

9.  "How am I going to live?": exploring barriers to ART adherence among adolescents and young adults living with HIV in Uganda.

Authors:  Sarah MacCarthy; Uzaib Saya; Clare Samba; Josephine Birungi; Stephen Okoboi; Sebastian Linnemayr
Journal:  BMC Public Health       Date:  2018-10-04       Impact factor: 3.295

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