Interventions for patients and caregivers to improve knowledge of sickle cell disease and recognition of its related complications

Asnani, Monika; Quimby, Kim R; Bennett, Natalie

doi:10.1002/14651858.cd011175.pub2

Cited by 40 publications

(34 citation statements)

References 73 publications

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“…Our follow‐up surveys suggest that while caregivers’ knowledge remains higher than baseline, similar to studies of caregivers of children with SCD (Asnani et al. ), SCT knowledge may slowly decline with time. This decline could be partially related to differences in how the SCTKA was administered at the different study time points (independently on a computer vs. over the telephone with a research coordinator), but it is concerning that after only a few months, one‐fourth of caregivers who had received in‐person education had low SCT knowledge.…”

Section: Discussionsupporting

confidence: 79%

Sickle cell trait knowledge and health literacy in caregivers who receive in‐person sickle cell trait education

Creary

Adan

Stanek

et al. 2017

Molec Gen & Gen Med

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BackgroundDespite universal screening that detects sickle cell trait (SCT) in infancy, only 16% of Americans with SCT know their status. To increase SCT status awareness, effective education for patients and their families is needed. The objective of this study was to assess caregivers’ SCT knowledge before and after an in‐person SCT education session.MethodsA trained educator provides in‐person SCT education to caregivers of referred infants with SCT at Nationwide Children's Hospital. From August 2015 to July 2016, primarily English‐speaking caregivers of infants with hemoglobin S‐trait were recruited and completed a health literacy assessment and a SCT knowledge assessment (SCTKA) before and after receiving education. Caregivers repeated the SCTKA again after ≥6 months, if they could be contacted.ResultsThirty‐eight (38.1%) percent of 113 caregivers had high SCTKA scores (≥75%) before education but 90.3% achieved high scores after education. Caregivers with low SCTKA scores after education had significantly lower health literacy (P = 0.029) and baseline SCTKA scores (P = 0.003) compared to those with higher scores after education. At ≥6 months, caregivers’ scores were significantly higher (P = 0.014) than baseline, but only 73.3% scored ≥75%.ConclusionOur results suggest that caregivers’ baseline SCT knowledge is low, improves with in‐person education but may decline with time. Caregivers who do not achieve high SCT knowledge after education had lower health literacy and baseline knowledge. Future studies should determine if adapting in‐person education to caregivers’ health literacy and knowledge levels results in high and sustained SCT knowledge among all caregivers and more individuals who know their SCT status.

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Section: Discussionsupporting

confidence: 79%

Sickle cell trait knowledge and health literacy in caregivers who receive in‐person sickle cell trait education

Creary

Adan

Stanek

et al. 2017

Molec Gen & Gen Med

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“…13,14 Previous studies related to epilepsy and other chronic diseases such as hemophilia and depression suggest that patients' direct perception of their disorder acts as a decisive factor in their level of adherence to treatment and maintaining health. 11,15 A study by Shoreet al reported that a child's need for information and concerns about support remained high, even 24 months postdiagnosis. 13,16 Research suggests that less knowledge by both the parent and the child may be linked to worry about the diagnosis of illness and its ramifications.…”

Section: Introductionmentioning

confidence: 99%

Retraction: Antiepileptic Drug Adherence and Psychosocial Factors in Children: Is There a Connection?

Avington

Underdahl

2019

Journal of Child Science

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Pediatric epilepsy is a neurological disorder characterized by recurrent seizures, globally affecting 15 million children. Antiepileptic drug therapy is commonly used in the treatment and control of epilepsy. Previous research has analyzed children's antiepileptic drug adherence from the perspective of parents and/or caregivers. This analysis examined the child's perspective (N = 34) regarding level of adherence to antiepileptic drug adherence and focused on psychosocial factors (e.g., child knowledge and worry) in children aged 6 to 12 years at 13 months after being diagnosed with epilepsy. The results suggested that socioeconomic status based on income may be a predictor of adherence (p = 0.00004) along with the positive correlation between child's knowledge about the disease and parent's disease-specific knowledge (p = 0.040). The findings indicate that further research on parent–child relationships is needed to improve medication adherence.

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“…Of the 39 reviews that reported the use of a website, 34 reviews (87%) reported this in the Search methods for identification of studies section. The remaining 5 reviews reported searching websites in the Potential biases section . This was usually a statement that websites were searched for unpublished literature to counteract bias in the published literature.…”

Section: Resultsmentioning

confidence: 99%

“…The remaining 5 reviews reported searching websites in the Potential biases section. 26,[55][56][57][58] This was usually a statement that websites were searched for unpublished literature to counteract bias in the published literature.…”

Section: Location Of Details Reportedmentioning

confidence: 99%

A review of the reporting of web searching to identify studies for Cochrane systematic reviews

Briscoe

2017

Research Synthesis Methods

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The literature searches that are used to identify studies for inclusion in a systematic review should be comprehensively reported. This ensures that the literature searches are transparent and reproducible, which is important for assessing the strengths and weaknesses of a systematic review and re-running the literature searches when conducting an update review. Web searching using search engines and the websites of topically relevant organisations is sometimes used as a supplementary literature search method. Previous research has shown that the reporting of web searching in systematic reviews often lacks important details and is thus not transparent or reproducible. Useful details to report about web searching include the name of the search engine or website, the URL, the date searched, the search strategy, and the number of results. This study reviews the reporting of web searching to identify studies for Cochrane systematic reviews published in the 6-month period August 2016 to January 2017 (n = 423). Of these reviews, 61 reviews reported using web searching using a search engine or website as a literature search method. In the majority of reviews, the reporting of web searching was found to lack essential detail for ensuring transparency and reproducibility, such as the search terms. Recommendations are made on how to improve the reporting of web searching in Cochrane systematic reviews.

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Interventions for patients and caregivers to improve knowledge of sickle cell disease and recognition of its related complications

Cited by 40 publications

References 73 publications

Sickle cell trait knowledge and health literacy in caregivers who receive in‐person sickle cell trait education

Sickle cell trait knowledge and health literacy in caregivers who receive in‐person sickle cell trait education

Retraction: Antiepileptic Drug Adherence and Psychosocial Factors in Children: Is There a Connection?

A review of the reporting of web searching to identify studies for Cochrane systematic reviews

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