Pediatric adherence: Perspectives of mothers of children with HIV

Wrubel, Judith; Moskowitz, Judith T.; Richards, T. Anne; Prakke, Heleen; Acree, Michael; Folkman, Susan

doi:10.1016/j.socscimed.2005.04.034

Cited by 47 publications

(57 citation statements)

References 32 publications

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“…In these cases, treatment can become a reminder of the parents' guilt about their role in their child's acquisition of infection, which is yet another challenge to adherence. 48 Research on family/caregiver variables has indicated that children are more adherent if they receive their medications from foster parents rather than biological parents or other relatives. 29,47 Parents of adherent children report higher perceptions of their ability to administer the prescribed doses and of the medication efficacy and less concern about others discovering their child's diagnosis.…”

Section: Author Manuscript Author Manuscriptmentioning

confidence: 99%

“…29,47 Parents of adherent children report higher perceptions of their ability to administer the prescribed doses and of the medication efficacy and less concern about others discovering their child's diagnosis. 16,48 The accuracy of caregivers' information about the child's HIV medications and corresponding dosages and dosing frequencies has been related to adherence, as has the number of barriers. 33,41 In a study of 75 perinatally infected 3-to 13-year-olds in New York, Mellins et al 36 found that nonadherence was related to worse parent-child communication, higher caregiver stress, lower caregiver quality of life, and worse caregiver cognitive functioning.…”

Section: Factors Related To Adherencementioning

confidence: 99%

See 1 more Smart Citation

Adherence to Antiretroviral Therapy for Pediatric HIV Infection: A Qualitative Systematic Review With Recommendations for Research and Clinical Management

Simoni

Montgomery

Martin³

et al. 2007

Pediatrics

197

166

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Although nonadherence to prescribed therapies is widespread, it is particularly problematic with highly active antiretroviral therapy for HIV infection. This review of >50 studies in the area of pediatric HIV infection revealed varying methods for assessing antiretroviral adherence with a wide range of estimates of adherence. Correlates of adherence could be grouped as those relating to the medication, the patient, and the caregiver/family, with many conflicting findings and a lack of theory guiding the research. Only 8 studies, mainly small feasibility or pilot investigations, evaluated highly active antiretroviral therapy adherence interventions in pediatric populations. We conclude with specific recommendations for assessment and clinical management of adherence and discuss directions for future research in this area. KeywordsHIV/AIDS; adherence; compliance; interventions; pediatric Adherence to therapy, or the extent to which a patient's behaviors coincide with medical advice mutually negotiated between the health professional and the patient, is a universal HHS Public Access Author Manuscript Author ManuscriptAuthor ManuscriptAuthor Manuscript challenge with all illnesses and in all age groups. 1 Each year in the United States, 500 000 physicians write 1.8 billion prescriptions involving 55 000 pharmacies. 2 However, many of these prescribed medications are never taken, with rates of nonadherence ranging from 15% to 93%. 3 Among persons with chronic illnesses, nonadherence is especially problematic, occurring in up to 82% of cases. [4][5][6] The effects of nonadherence range from individual disability (eg, unrelieved pain) to global threat (eg, development of treatment-resistant bacteria or viruses). The yearly monetary costs of nonadherence exceed $100 billion. 7Adherence is particularly critical with highly active antiretroviral therapy (HAART) in the treatment of pediatric HIV infection. The data on HAART for pediatric HIV infection, although scarcer than for adults, suggest that medication adherence is a strong predictor of therapeutic impact. 8,9 For example, Wiener et al 10 observed that among children with an HIV-1 RNA viral load (VL) < 10 000, 75% had taken 100% of their medication doses in the previous week, whereas among those with a VL of ≥10 000, only 36% reported taking all of their medication.Despite the benefits of HAART in treating pediatric HIV infection [11][12][13][14][15] and the adverse consequences of nonadherence, adherence is reportedly suboptimal among children. [16][17][18][19][20] It is likely thwarted by multiple barriers 21,22 and complicated because, unlike with many other chronic illnesses, most children who are born with HIV in the United States are ethnic/racial minorities who live in chronic poverty with limited resources and face discrimination, family disruption, substance abuse, and the stressors of life in the inner city. 23 In addition, stigma is greater for HIV/AIDS than other chronic illnesses, which often leads caregivers to conceal the child's diagnosis a...

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Section: Author Manuscript Author Manuscriptmentioning

confidence: 99%

Section: Factors Related To Adherencementioning

confidence: 99%

Adherence to Antiretroviral Therapy for Pediatric HIV Infection: A Qualitative Systematic Review With Recommendations for Research and Clinical Management

Simoni

Montgomery

Martin³

et al. 2007

Pediatrics

197

166

View full text Add to dashboard Cite

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“…Studies have reported on some aspects of responsibility for medication-related behaviors within families of children on ART. 11,19,20 In a study by Boni and colleagues, 19 86% of 25 caregivers of children on ART reported that they "watched children while they took their therapy." No additional information about regimen responsibility was provided.…”

mentioning

confidence: 99%

“…No additional information about regimen responsibility was provided. 19 Wrubel and colleagues, 20 in a qualitative interview study, reported on experiences of 71 mothers of children (ages 1-18 years) on ART; while 89% of mothers reported taking responsibility for their children's adherence on at least one occasion, 21% indicated that they shared the responsibility with their children at least part of the time, and nearly 25% of mothers indicated a desire for their children to be responsible for ART adherence. Only 2 mothers recognized that their adolescents may not be able to take their medications consistently without maternal reminders.…”

mentioning

confidence: 99%

“…Studies have examined families' barriers to pediatric ART adherence regimens, 19,20,[23][24][25][26][27][28][29][30][31][32][33][34] but only three small studies have examined the statistical association between reported barriers and adherence, and those have produced conflicting results. When a checklist was used to assess barriers to adherence, more barriers were associated with lower levels of caregiver-reported adherence 29,30 ; yet when 10 barriers were rated on a Likert-type scale, the mean barrier frequency score was not associated with adherence measured by caregiver report, pill counts, or electronic monitoring.…”

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confidence: 99%

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Family Experiences with Pediatric Antiretroviral Therapy: Responsibilities, Barriers, and Strategies for Remembering Medications

Marhefka

Koenig

Allison

et al. 2008

AIDS Patient Care and STDs

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This study examines the relationship between adherence to pediatric HIV regimens and three family experience factors: (1) regimen responsibility; (2) barriers to adherence; and (3) strategies for remembering to give medications. Caregivers of 127 children ages 2-15 years in the PACTS-HOPE multisite study were interviewed. Seventy-six percent of caregivers reported that their children were adherent (taking Ն 90% of prescribed doses within the prior 6 months). Most caregivers reported taking primary responsibility for medication-related activities (72%-95% across activities); caregivers with primary responsibility for calling to obtain refills (95%) were more likely to have adherent children. More than half of caregivers reported experiencing one or more adherence barriers (59%). Caregivers who reported more barriers were also more likely to report having non-adherent children. Individual barriers associated with nonadherence included forgetting, changes in routine, being too busy, and child refusal. Most reported using one or more memory strategies (86%). Strategy use was not associated with adherence. Using more strategies was associated with a greater likelihood of reporting that forgetting was a barrier. For some families with adherence-related organizational or motivational difficulties, using numerous memory strategies may be insufficient for mastering adherence. More intensive interventions, such as home-based nurse-administered dosing, may be necessary. 637

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Viral suppression among children and their caregivers living with HIV in western Kenya

et al. 2019

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Introduction Despite the central role of caregivers in managing HIV treatment for children living with HIV , viral suppression within caregiver–child dyads in which both members are living with HIV is not well described. Methods We conducted a retrospective analysis of children living with HIV <15 years of age and their caregivers living with HIV attending HIV clinics affiliated with the Academic Model Providing Access to Healthcare ( AMPATH ) in Kenya between 2015 and 2017. To be included in the analysis, children and caregivers must have had ≥1 viral load ( VL ) during the study period while receiving antiretroviral therapy ( ART ) for ≥6 months, and the date of the caregiver's VL must have occurred ±90 days from the date of the child's VL . The characteristics of children, caregivers and dyads were descriptively summarized. Multivariable logistic regression was used to estimate the odds of viral non‐suppression (≥ 1000 copies/ mL ) in children, adjusting for caregiver and child characteristics. Results Of 7667 children who received care at AMPATH during the study period, 1698 were linked to a caregiver living with HIV and included as caregiver–child dyads. For caregivers, 94% were mothers, median age at ART initiation 32.8 years, median CD 4 count at ART initiation 164 cells/mm 3 and 23% were not virally suppressed. For children, 52% were female, median age at ART initiation 4.2 years, median CD 4 values at ART initiation were 15% (age < 5 years) and 396 cells/mm 3 (age ≥ 5 years), and 38% were not virally suppressed. In the multivariable model, children were found more likely to not be virally suppressed if their caregivers were not suppressed compared to children with suppressed caregivers ( aOR = 2.40, 95% CI : 1.86 to 3.10). Other characteristics associated with child viral non‐suppression included caregiver ART regimen change prior to the VL , caregiver receipt of a non‐ NNRTI ‐based regimen at the time of the VL , younger child age at ART initiation and child tuberculosis treatment at the time of the VL . Conclusions Children were at higher risk of viral non‐suppression if their caregive...

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Pediatric adherence: Perspectives of mothers of children with HIV

Cited by 47 publications

References 32 publications

Adherence to Antiretroviral Therapy for Pediatric HIV Infection: A Qualitative Systematic Review With Recommendations for Research and Clinical Management

Adherence to Antiretroviral Therapy for Pediatric HIV Infection: A Qualitative Systematic Review With Recommendations for Research and Clinical Management

Family Experiences with Pediatric Antiretroviral Therapy: Responsibilities, Barriers, and Strategies for Remembering Medications

Viral suppression among children and their caregivers living with HIV in western Kenya

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