A cross-sectional study on caregivers’ perspective of the quality of life and adherence of paediatric HIV patients to highly active antiretroviral therapy

Lahai, Michael; James, Peter Bai; Wannang, Noel N.; Wurie, Haja; Conteh, Sorie; Bah, Abdulai Jawo; Samai, Mohamed

doi:10.1186/s12887-020-02194-7

Cited by 8 publications

(3 citation statements)

References 26 publications

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“…The significance of family and social support in managing chronic diseases is well-established, often positively impacting healthrelated QoL [24]. Studies across various chronic conditions like hypertension and HIV have linked effective disease management to living within a nuclear family structure [25][26][27][28]. However, in our study focusing on FMF, we found no significant difference in family structure concerning family support.…”

Section: Discussioncontrasting

confidence: 73%

The Quality of Life in Patients with Familial Mediterranean Fever and Their Parents Perception

Ensari,

Akyol Onder,

Bilac

et al. 2024

Klin Padiatr

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Background Familial Mediterranean fever (FMF) is a chronic disease characterized by recurrent episodes of fever and polyserositis. This study aimed to assess children’s quality of life (QoL), as reported by children and their parents, and to compare the results according to clinical variables. Material and Methods The study examined 107 children with FMF, evaluating their demographic and genetic data, utilizing the Pediatric Quality of Life Inventory (PedsQL) to assess QoL, and comparing scores based on disease severity. Results The severity of FMF is inversely correlated with QoL scores, with mild cases having the highest scores (97±4), followed by moderate (76±11) and severe cases (52±10.3) (p<0,001). Disease severity, treatment adherence, healthcare utilization, genetic mutations, family income, and maternal age at birth all significantly impact perceived quality of life in FMF patients (p<0,001). Additionally, parents reported lower QoL for children with FMF who experienced various adverse factors such as low family income, household smoking, frequent attacks, hospitalizations, irregular medication use, and low maternal education levels (p<0,001). Conclusion Children’s daily activities, academic performance, and family functioning are all significantly impacted by FMF. Physicians caring for patients with FMF should be aware of the QoL changes in the management of these patients. As a result, medical therapy, patient education, and indicators of psychological and social support can all be offered more effectively.

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Section: Discussioncontrasting

confidence: 73%

The Quality of Life in Patients with Familial Mediterranean Fever and Their Parents Perception

Ensari,

Akyol Onder,

Bilac

et al. 2024

Klin Padiatr

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“…The MONOD ANRS 12206 cohort showed that fathers as caregivers were risk factors for VF (28). Other studies from resource-limited countries also reported that the age, marital status, and physical health of caregivers were risk factors associated with adherence (29)(30)(31). It suggested that there was a direct influence between children's adherence to antiretroviral therapy and their caregivers.…”

Section: Discussionmentioning

confidence: 95%

Thirteen-year viral suppression and immunologic recovery of LPV/r-based regimens in pediatric HIV treatment: a multicenter cohort study in resource-constrained settings of China

Lao,

Zhang,

Yan

et al. 2023

Front. Med.

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BackgroundAntiretroviral Therapy (ART) in children remains challenging due to resource-constrained settings. We conducted a 13-year, prospective, multicenter cohort study on the effectiveness and safety of LPV/r-based regimens in ART-naive and ART-experienced children.MethodsFrom January 2008 to May 2021, children living with HIV-1 were recruited with LPV/r-based regimens from 8 clinical research sites in 6 provinces in China. Effectiveness outcomes were virologic failure (defined as at least two consecutive measurements of VL > 200 copies/mL after 6 months of ART) and immune response (defined as CD4% recovered to more than 25% after 12 months of treatment). The safety outcomes were treatment-related grade 2–4 adverse events and abnormal laboratory test results.ResultsA total of 345 ART-naïve children and 113 ART-experienced children were included in this cohort study. The median follow-up time was 7.3 (IQR 5.5–10.5) years. The incidence density of virologic failure was 4.1 (95% CI 3.3–4.9) per 100 person-years in ART-naïve children and 5.0 (95% CI 3.5–6.5) per 100 person-years in ART-experienced children. Kaplan Meyer (KM) curve analysis showed children with ART experience were at a higher risk of virologic failure (p < 0.05). The risk factors of virologic failure in ART-naïve children were clinic setting in rural hospitals (aHR = 2.251, 1.108–4.575), annual missed dose times >5 days of LPV intake (aHR = 1.889, 1.004–3.554); The risk factor of virologic failure in ART-experienced children was missed dose times >5 days (aHR = 2.689, 1.299–5.604) and mother as caregivers for ART administration (aHR = 0.475, 0.238–0.948). However, during long-term treatment, viral suppression rates between ART-naïve and ART-experienced children remained similar. No significant differences were observed in the immune response, treatment-related grade 2–4 events, and abnormal laboratory test results between ART-naïve children and ART-experienced children.ConclusionOur research underscores that with consistent, long-term treatment of LPV/r-based regimens, ART-experienced children can achieve therapeutic outcomes comparable to ART-naïve children. It provides crucial insights on LPV/r-based regimens in pediatric HIV treatment, especially in resource-limited settings where high-cost Integrase Strand Transfer Inhibitors (INSTs) are inaccessible. This evidence-based understanding provides an essential addition to the global therapeutic strategies for pediatric HIV treatment.

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“…Likewise, studies conducted in Africa have shown that non-disclosure of children's HIV status by caregivers has influenced ART adherence among children negatively. [32][33][34] Hence family caregivers have complained of children's refusal to take ART because, in a longitudinal observational cohort study, a child's awareness of his/her HIV status is an influencing factor in adherence to ART. 27 Children with information about their HIV status adhere to ART better than children without knowledge of their HIV status.…”

Section: Discussionmentioning

confidence: 99%

Challenges and support experienced by family caregivers seeking antiretroviral therapy services for children living with HIV/AIDS: a phenomenological study in Ghana

Yiryuo,

Kpekura,

Osman

et al. 2024

BMJ Open

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BackgroundFamily caregivers of children living with HIV/AIDS in most cases are found to be overwhelmed and under-resourced, yet they are believed to be the primary source of support for children living with HIV/AIDS. Family caregivers experience different challenges that affect their children’s antiretroviral therapy (ART) adherence.AimThis study explored the lived experiences of family caregivers of children living with HIV/AIDS who sought ART services for these children at the St Joseph’s Hospital of Jirapa, Ghana.MethodUsing a qualitative phenomenology design and a semistructured in-depth interview guide and using purposive sampling, data were gathered from 13 family caregivers of children living with HIV/AIDS receiving ART treatment at St Joseph’s Hospital, Jirapa following ethical approval. All interviews were audio-taped and transcribed verbatim. Reflexive thematic analysis was used to analyse the transcribed data.FindingsSix themes were generated: five challenges and one support. Family caregivers of children living with HIV/AIDS experienced: (1) Financial challenges, (2) Human-related challenges, (3) Challenges at HIV testing and counselling (HTC) centres, (4) Challenges with transportation, (5) Challenges in disclosing children’s HIV status to them and (6) Support received from HTC and their family members.Conclusion and recommendationFamily caregivers of children living with HIV/AIDS experience daunting challenges in their quest to care for their children. Governmental and non-governmental HIV/AIDS programme support should include small business skills training and acquisition including capital to help set up small-scale businesses for such caregivers to reduce their financial challenges. Access to ART at clinics closer to caregivers is also key to promoting adherence. Family and community support has been recognised as key to enhancing ART adherence. Education of caregivers on policy regarding disclosure of the HIV/AIDS status of children, the need to work to reduce the time spent by caregivers at HTC, and ensuring privacy by limiting access to HTCs to only caregivers and their children, are important to enhancing adherence.

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A cross-sectional study on caregivers’ perspective of the quality of life and adherence of paediatric HIV patients to highly active antiretroviral therapy

Cited by 8 publications

References 26 publications

The Quality of Life in Patients with Familial Mediterranean Fever and Their Parents Perception

The Quality of Life in Patients with Familial Mediterranean Fever and Their Parents Perception

Thirteen-year viral suppression and immunologic recovery of LPV/r-based regimens in pediatric HIV treatment: a multicenter cohort study in resource-constrained settings of China

Challenges and support experienced by family caregivers seeking antiretroviral therapy services for children living with HIV/AIDS: a phenomenological study in Ghana

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