Improving disease knowledge in 6‐ to 10‐year‐olds with sickle cell disease: <scp>A</scp> quasi‐experimental study

Morrison‐Levy, Nadine; Knight‐Madden, Jennifer; Royal-Thomas, Tamika; King, Lesley G.; Asnani, Monika

doi:10.1111/cch.12559

Cited by 9 publications

(14 citation statements)

References 24 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…50 The majority of interventions occurred in an outpatient clinic setting (n = 17). 35,[37][38][39][40][41]44,48,[50][51][52][55][56][57][59][60][61] The remaining interventions…”

Section: Study Characteristicsmentioning

confidence: 99%

“…Of the 27 intervention studies included in this review, seven targeted SCD disease knowledge as the primary intervention outcome. 35,40,46,48,49,56,59 Seven interventions aimed to improve self-management skills and self-efficacy. 37,38,40,42,47,50,61 Four interventions targeted pain and pain management.…”

Section: Interventions Described In Included Studiesmentioning

confidence: 99%

“…Seven studies focused on disease knowledge. 35,40,46,48,49,56,59 Five were conducted in an outpatient clinic setting with clinic personnel.…”

Section: Disease Knowledge Interventions (N = 7)mentioning

confidence: 99%

“…35,40,46,48 Five of the seven interventions using disease knowledge as a primary outcome reported a statistically significant increase in disease knowledge for participants who received the intervention. 35,40,46,48,56 Self-management and self-efficacy interventions (n = 7)…”

Section: The Other Two Knowledge Interventions Took Place In An Inpat...mentioning

confidence: 99%

See 3 more Smart Citations

Individual‐level behavioral interventions to support optimal development of children with sickle cell disease: A systematic review

Hoyt

Hurwitz

Varughese

et al. 2022

Pediatric Blood & Cancer

View full text Add to dashboard Cite

This review aimed to identify and describe individual-level behavioral interventions for children 0-18 years of age with sickle cell disease (SCD). PRISMA guidelines were followed at each stage of this review. Twenty-seven studies were included, representing six intervention types: disease knowledge (n = 7), self-management (n = 7), pain management (n = 4), school functioning (n = 4), cognitive health (n = 4), and mental health (n = 2). Most interventions targeted older children (5+ years), while only two examined interventions for children 0-3 years. This review suggests that offering education about disease knowledge, self-management, and pain management interventions can be beneficial for this population. Future research is needed to understand interventions to support young children and the impact of SCD on development.

show abstract

“…50 The majority of interventions occurred in an outpatient clinic setting (n = 17). 35,[37][38][39][40][41]44,48,[50][51][52][55][56][57][59][60][61] The remaining interventions…”

Section: Study Characteristicsmentioning

confidence: 99%

Section: Interventions Described In Included Studiesmentioning

confidence: 99%

“…Seven studies focused on disease knowledge. 35,40,46,48,49,56,59 Five were conducted in an outpatient clinic setting with clinic personnel.…”

Section: Disease Knowledge Interventions (N = 7)mentioning

confidence: 99%

Section: The Other Two Knowledge Interventions Took Place In An Inpat...mentioning

confidence: 99%

See 2 more Smart Citations

Individual‐level behavioral interventions to support optimal development of children with sickle cell disease: A systematic review

Hoyt

Hurwitz

Varughese

et al. 2022

Pediatric Blood & Cancer

View full text Add to dashboard Cite

show abstract

“…Furthermore, deficits in full‐scale IQ and executive functioning have been reported even in the absence of an acute cerebrovascular accident . The successful use of educational interventions has been described in the pediatric SCD population, but there is a paucity of literature that specifically focuses on the transition period . This study sought to explore the feasibility and effectiveness of educational interventions on this high‐risk subpopulation.…”

Section: Introductionmentioning

confidence: 99%

Implementation of an educational intervention to optimize self‐management and transition readiness in young adults with sickle cell disease

Calhoun

Abel

Pham

et al. 2019

Pediatric Blood & Cancer

View full text Add to dashboard Cite

Background The transition from the pediatric setting to adult care is a well‐described period of morbidity and mortality for persons with sickle cell disease (SCD). We sought to measure the feasibility and effectiveness of providing skill‐based educational handouts on improving self‐management and transition readiness in adolescents with SCD. Methods This was a single‐center study in which participants completed a self‐assessment, the Adolescent Autonomy Checklist (AAC), to assess transition readiness and self‐management skills at baseline. After results were reviewed by the study coordinator, participants were provided with skill‐based handouts on noted areas of deficit. The AAC was subsequently completed at a follow‐up visit. All data were stored electronically and transferred into SAS for statistical analyses. Results Sixty‐one patients completed the AAC at baseline and postintervention. At baseline, patients reported needing the most help with skills in money management, living arrangements, vocational skills, and emergency and healthcare skills. Postintervention, statistically significant improvements (P < 0.05) occurred in skills related to laundry, housekeeping, healthcare, and sexual development. A regression model exploring the time to follow‐up showed that most improvements could not be attributed to maturation alone. Conclusion This study showed that educational handouts are a readily implementable and well‐accepted intervention among adolescents with SCD who identify challenges with skills necessary to successfully transition to adult care. Distinguishing which transition needs are best improved with this type of intervention will help to strengthen the multidisciplinary approach necessary to support adolescents and young adults with SCD as they matriculate to adult care.

show abstract

Empowering patients with sickle cell anemia and their families through innovative educational methods

Plett

Eling²,

Tehseen

et al. 2023

eJHaem

View full text Add to dashboard Cite

Sickle cell disease (SCD) is a group of inherited blood disorders caused by a mutation in the beta subunit of hemoglobin (HbS). SCD will hereafter be referred to as sickle cell anemia (SCA) as this is the term our patients and their families prefer. There are approximately 5000 Canadians living with SCA including children. Pediatric SCA patient education can: improve knowledge, decrease hospitalization, improve medication possession ratio, lead to better SCA‐related functioning, and lower pain impact. Innovative educational materials were developed to improve knowledge and self‐efficacy regarding the illness management of patients and parents/guardians. Patients (n = 5; aged 8–18) with SCA and parents (n = 5) of patients (aged 0–18) were recruited via flyers sent directly to patients and distributed through partner patient organization Sickle Cell Awareness Network of Saskatchewan. Patient and parent focus groups were held separately over Zoom to receive feedback for the video. An additional interview was held for a participant that required a translation of the video. Audio recordings were transcribed using Zoom and Otter.ai. The coding of transcripts was facilitated by NVivo (QSR International Pty Ltd, 2022, release 1.6.2). The thematic analysis centered around SCA management concepts relevant to the research aims. Important themes that emerged included ‘Age Appropriateness’, ‘Empowerment’, ‘Knowledge Gaps’, ‘Linguistic Accessibility’, ‘Medication Adherence’, ‘Strength in Community’, and ‘Transition to Adult Care’. The video was well received, and “brought peace of mind”. Patient feedback was incorporated into the final version of the educational materials.

show abstract

Improving disease knowledge in 6‐ to 10‐year‐olds with sickle cell disease: A quasi‐experimental study

Abstract: The study highlights that a simple, inexpensive (cost: US$1/book) child-friendly intervention can significantly improve knowledge about SCD even in young children. It also underlines various social factors that are associated with children's understanding of their disease.

Cited by 9 publications

References 24 publications

Individual‐level behavioral interventions to support optimal development of children with sickle cell disease: A systematic review

Individual‐level behavioral interventions to support optimal development of children with sickle cell disease: A systematic review

Implementation of an educational intervention to optimize self‐management and transition readiness in young adults with sickle cell disease

Empowering patients with sickle cell anemia and their families through innovative educational methods

Contact Info

Product

Resources

About