Improving the informed consent process among HIV‐infected undisclosed minors participating in a biomedical research: insights from the multicentre nutritional SNACS study in Senegal

Hejoaka, Fabienne; Varloteaux, Marie; Desclaux‐sall, Caroline; Ndiaye, Sidy Mokhtar; Diop, Karim; Diack, Aminata; Niasse, Fatou; Cames, Cécile

doi:10.1111/tmi.13202

Cited by 4 publications

(6 citation statements)

References 43 publications

(72 reference statements)

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“…We found HIV-non disclosure to be associated with sub-optimal RUF intake. This finding echoes our recent analysis in the same cohort reporting that HIV-disclosed participants showed a better understanding of the research information at enrolment in the present study [27]. Disease disclosure proceeds together with a better understanding of therapeutic issues, such as the importance of adherence to medication [31].…”

Section: Discussionsupporting

confidence: 89%

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Adherence to ready-to-use food and acceptability of outpatient nutritional therapy in HIV-infected undernourished Senegalese adolescents: research-based recommendations for routine care

et al. 2020

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Background Ready-to-use food (RUF) is increasingly used for nutritional therapy in HIV-infected individuals. However, practical guidance advising nutrition care to HIV-infected adolescents is lacking, so that little is known about the acceptability of such therapy in this vulnerable population. This study assesses the overall acceptability and perception of a RUF-based therapy and risk factors associated with sub-optimal RUF intake in HIV-infected undernourished adolescents in Senegal. Methods Participants 5 to 18 years of age with acute malnutrition were enrolled in 12 HIV clinics in Senegal. Participants were provided with imported RUF, according to WHO prescription weight- and age-bands (2009), until recovery or for a maximum of 9–12 months. Malnutrition and recovery were defined according to WHO growth standards. Adherence was assessed fortnightly by self-reported RUF intake over the period. Sub-optimal RUF intake was defined as when consumption of the RUF provision was < 50%. RUF therapy acceptability and perceptions were assessed using a structured questionnaire at week 2 and focus group discussions (FGDs) at the end of the study. Factors associated with sub-optimal RUF intake at week 2 were identified using a stepwise logistic regression model. Results We enrolled 173 participants, with a median age of 12.5 years (Interquartile range: 9.5–14.9), of whom 61% recovered from malnutrition within the study period. Median follow-up duration was 66 days (21–224). RUF consumption was stable, varying between 64 and 57% of the RUF provided, throughout the follow-up. At week 2, sub-optimal RUF intake was observed in 31% of participants. Dislike of the taste of RUF (aOR = 5.0, 95% CI: 2.0–12.3), HIV non-disclosure (5.1, 1.9–13.9) and food insecurity (2.8, 1.1–7.2) were the major risk factors associated with sub-optimal RUF intake at week 2. FGDs showed that the need to hide from others to avoid sharing and undesirable effects were other constraints on RUF feeding. Conclusions This study revealed several factors reducing the acceptability and adherence to RUF therapy based on WHO guidelines in HIV-infected adolescents. Tailoring prescription guidance and empowering young patients in their care are crucial levers for improving the acceptability of RUF-based therapy in routine care. Trial registration ClinicalTrials.gov identifier: NCT03101852, 04/04/2017.

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Section: Discussionsupporting

confidence: 89%

“…All parents or surrogate caregivers provided written informed consent. Participants aged ≥7 years received extended information about the research and provided verbal assent [27].…”

Section: Ethical Approvalmentioning

confidence: 99%

Adherence to ready-to-use food and acceptability of outpatient nutritional therapy in HIV-infected undernourished Senegalese adolescents: research-based recommendations for routine care

et al. 2020

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“…We found HIV-non disclosure to be associated with sub-optimal RUF intake. This finding echoes our recent analysis in the same cohort reporting that HIV-disclosed participants showed a better understanding of the research information at enrolment in the present study (25). Disease disclosure proceeds together with a better understanding of therapeutic issues, such as the importance of adherence to medication (29).…”

Section: Discussionsupporting

confidence: 89%

“…All parents or surrogate caregivers provided written informed consent. Participants aged ≥ 7 years received extended information about the research and provided verbal assent (25).…”

Section: Ethicsmentioning

confidence: 99%

Adherence to ready-to-use food and acceptability of outpatient nutritional therapy in HIV-infected undernourished Senegalese adolescents: research-based recommendations for routine care.

Niasse

Varloteaux

Diop

et al. 2019

Preprint

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Background: Ready-to-use food (RUF) is increasingly used for nutritional therapy in HIV-infected individuals. However, practical guidance advising nutrition care to HIV-infected adolescents is lacking, and little is known about the acceptability of such therapy in this vulnerable population. This SNACS study assesses the overall acceptability and perception of a RUF-based therapy and risk factors associated with sub-optimal RUF intake in HIV-infected undernourished adolescents in Senegal. Methods: Participants aged 5 to 18 with acute malnutrition were enrolled in 12 HIV clinics in Senegal. Participants were provided with imported RUF, according to WHO prescription weight- and age-bands (2009), until recovery or for a maximum of 9-12 months. Malnutrition and recovery were defined according to WHO growth standards. Adherence was assessed fortnightly by self-reported RUF intake over the period. Sub-optimal RUF intake was defined as when consumption of the RUF provision was < 50%. RUF therapy acceptability and perceptions were assessed using a structured questionnaire (week 2) and focus group discussions (end of the study). Factors associated with sub-optimal RUF intake at week 2 were identified using stepwise logistic regression model. Results: We enrolled 173 participants, with a median age of 12.5 years (Interquartile range: 9.5 – 14.9), of whom 61% recovered from malnutrition within the study period. Median follow-up duration was 66 days (21 – 224). At week 2, sub-optimal RUF intake was observed in 31% of participants. Dislike of the taste of RUF (aOR=5.0, 95% CI: 2.0 – 12.3), HIV non-disclosure (5.1, 1.9 – 13.9) and food insecurity (2.8, 1.1 – 7.2) were the major risk factors associated with sub-optimal RUF intake. Most participants initially reported a positive organoleptic appreciation of RUF. Constraints on RUF feeding were the need to hide from others to avoid sharing and limited time available. Among sub-optimal consumers, disgust and adverse effects attributed to RUF were perceived as barriers impossible to overcome. Conclusions: This study revealed several factors reducing the acceptability and adherence to RUF therapy based on WHO guidelines in HIV-infected adolescents. Strengthening counselling capacity of HIV clinics, tailoring prescriptions and empowering young patients, are crucial for improving acceptability of RUF-based therapy in routine care.

show abstract

“…All parents or surrogate caregivers provided written informed consent. Participants aged ≥ 7 years received extended information about the research and provided verbal assent (26).…”

Section: Ethicsmentioning

confidence: 99%

Adherence to ready-to-use food and acceptability of outpatient nutritional therapy in HIV-infected undernourished Senegalese adolescents: research-based recommendations for routine care.

Niasse

Varloteaux

Diop

et al. 2020

Preprint

Self Cite

View full text Add to dashboard Cite

Background : Ready-to-use food (RUF) is increasingly used for nutritional therapy in HIV-infected individuals. However, practical guidance advising nutrition care to HIV-infected adolescents is lacking, so that little is known about the acceptability of such therapy in this vulnerable population. This study assesses the overall acceptability and perception of a RUF-based therapy and risk factors associated with sub-optimal RUF intake in HIV-infected undernourished adolescents in Senegal. Methods : Participants aged 5 to 18 with acute malnutrition were enrolled in 12 HIV clinics in Senegal. Participants were provided with imported RUF, according to WHO prescription weight- and age-bands (2009), until recovery or for a maximum of 9-12 months. Malnutrition and recovery were defined according to WHO growth standards. Adherence was assessed fortnightly by self-reported RUF intake over the period. Sub-optimal RUF intake was defined as when consumption of the RUF provision was < 50%. RUF therapy acceptability and perceptions were assessed using a structured questionnaire at week 2 and focus group discussions (FGDs) at the end of the study. Factors associated with sub-optimal RUF intake at week 2 were identified using a logistic regression. Results : We enrolled 173 participants, with a median age of 12.5 years (Interquartile range: 9.5 – 14.9), of whom 61% recovered from malnutrition within the study period. Median follow-up duration was 66 days (21 – 224). RUF consumption was stable, varying between 64% and 57% of the RUF provided, throughout the follow-up. At week 2, sub-optimal RUF intake was observed in 31% of participants. Dislike of the taste of RUF (aOR=5.0, 95% CI: 2.0 – 12.3), HIV non-disclosure (5.1, 1.9 – 13.9) and food insecurity (2.8, 1.1 – 7.2) were the major risk factors associated with sub-optimal RUF intake at week 2. The need to hide from others to avoid sharing and undesirable effects were other constraints on RUF feeding. Conclusions : This study revealed several factors reducing the acceptability and adherence to RUF therapy based on WHO guidelines in HIV-infected adolescents. Strengthening capacity of HIV clinics, tailoring prescriptions and empowering young patients, are crucial levers for improving the acceptability of RUF-based therapy in routine care.

show abstract

Improving the informed consent process among HIV‐infected undisclosed minors participating in a biomedical research: insights from the multicentre nutritional SNACS study in Senegal

Cited by 4 publications

References 43 publications

Adherence to ready-to-use food and acceptability of outpatient nutritional therapy in HIV-infected undernourished Senegalese adolescents: research-based recommendations for routine care

Adherence to ready-to-use food and acceptability of outpatient nutritional therapy in HIV-infected undernourished Senegalese adolescents: research-based recommendations for routine care

Adherence to ready-to-use food and acceptability of outpatient nutritional therapy in HIV-infected undernourished Senegalese adolescents: research-based recommendations for routine care.

Adherence to ready-to-use food and acceptability of outpatient nutritional therapy in HIV-infected undernourished Senegalese adolescents: research-based recommendations for routine care.

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