School Performance and Disease Interference in Adolescents with Sickle Cell Disease

Crosby, Lori E.; Joffe, Naomi E.; Irwin, Mary Kay; Strong, Heather; Peugh, James; Shook, Lisa M; Kalinyak, Karen; Mitchell, Monica J.

doi:10.14434/pders.v34i1.13918

Cited by 26 publications

(30 citation statements)

References 37 publications

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“…Provision of support in some NEIs was situational rather than systemic, depending largely on the individual lecturer. Similarly, Gelbar et al ( 2015 ) found that support for SWDs was left to the discretion of lecturers and that students’ experience of this was ‘feeling left behind’. One explanation for the lack of support could be educators’ lack of understanding or training in disability and support measures (Mosia & Phasha 2017 ).…”

Section: Resultsmentioning

confidence: 98%

Integration experiences of student and qualified nurses with disabilities who graduated from selected KwaZulu-Natal nursing education institutions: An exploratory case study

Moodley¹,

Mchunu

2018

Curationis

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BackgroundDespite the introduction of the Disability Policy Guidelines in South Africa (SA), student nurses who have disabilities (SNWDs) are still habitually and effectively excluded from nurse training programmes, and hence from the nursing profession. Yet SNWD may be able to offer a unique perspective.ObjectivesTo explore and describe the integration experiences of both student and qualified nurses with disabilities who graduated from selected KwaZulu-Natal nursing education institutions (NEIs).MethodA concurrent mixed-method design based on multiple embedded case studies served as the primary data collection instrument in this paper. The researcher initially conducted a survey of all the private NEIs to determine which had experienced training SNWDs; 3 cases and 10 embedded cases were selected, using non-probability purposive sampling. Individual interviews were conducted with students and qualified nurses with who have a disability (n = 10) who had graduated from NEIs.ResultsThe findings of the study indicated that, largely, private NEIs are paving the way for integrating SNWDs; however, there are still some gaps in meeting the needs of these students. Despite strong legislative policies, an inclusive and enabling teaching and learning environment for SNWDs in nurse training remains largely absent.ConclusionThe study recommends that NEIs develop policy guidelines for integrating SNWDs in nursing education programmes promoting an inclusive nursing education for SNWDs. The introduction of a disability liaison to assist SNWDs by liaising between key stakeholders and, perhaps, addressing many of the challenges that SNWDs experience in the clinical facilities where nursing personnel are unaware of their disability.

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Section: Resultsmentioning

confidence: 98%

Integration experiences of student and qualified nurses with disabilities who graduated from selected KwaZulu-Natal nursing education institutions: An exploratory case study

Moodley¹,

Mchunu

2018

Curationis

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“…These findings support what has previously been described in studies with adolescents and adults with SCD. These include difficulties in developing peer relationships; limitations in physical activity; school and activity absenteeism; feelings of worry and uncertainty; disease-related stigma; and negative responses from peers, teachers, and HCPs [3,4,25-32]. These challenges were described by participants in the context of Ontario, Canada, and highlight the continued perceived challenges this population faces throughout childhood and adolescence.…”

Section: Discussionmentioning

confidence: 99%

Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study

Kulandaivelu¹,

Lalloo²,

Ward³

et al. 2018

JMIR Pediatr Parent

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Background Accessible self-management interventions are critical for adolescents with sickle cell disease to better cope with their disease, improve health outcomes and health-related quality of life, and promote successful transition to adult health care services. However, very few comprehensive self-management and transitional care programs have been developed and tested in this population. Internet and mobile phone technologies can improve accessibility and acceptability of interventions to promote disease self-management in adolescents with sickle cell disease. Objective The aim of this study was to qualitatively explore the following from the perspectives of adolescents, parents, and their health care providers: (1) the impact of sickle cell disease on adolescents to identify challenges to their self-management and transitional care and (2) determine the essential components of a digital self-management and transitional care program as the first phase to inform its development. Methods A qualitative descriptive design utilizing audio-recorded, semistructured interviews was used. Adolescents (n=19, aged 12-19 years) and parents (n=2) participated in individual interviews, and health care providers (n=17) participated in focus group discussions and were recruited from an urban tertiary care pediatric hospital. Audio-recorded data were transcribed verbatim and organized into categories inductively, reflecting emerging themes using simple content analysis. Results Data were categorized into 4 major themes: (1) impact of sickle cell disease, (2) experiences and challenges of self-management, (3) recommendations for self-management and transitional care, and (4) perceptions about a digital self-management program. Themes included subcategories and the perspectives of adolescents, parents, and health care providers. Adolescents discussed more issues related to self-management, whereas health care providers and parents discussed issues related to transition to adult health services. Conclusions Adolescents, parents, and health care providers described the continued challenges youth with sickle cell disease face in terms of psychosocial impacts and stigmatization. Participants perceived a benefit to alleviating some of these challenges through a digital self-management tool. They recommended that an effective digital self-management program should provide appropriate sickle cell disease–related education; guidance on developing self-advocacy and communication skills; empower adolescents with information for planning for their future; provide options for social support; and be designed to be engaging for both adolescents and parents to use. A digital platform to deliver these elements is an accessible and acceptable way to address the self-management and transitional care needs of adolescents.

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“…In line with neurocognitive deficits, academic underachievement is common for children with SCD 9,18,19 . Approximately 60% of children with SCD report academic difficulties related to their disease 20 . Academic deficits in SCD are associated with overt and silent stroke 13,18,21 , and school absenteeism 22,23 .…”

Section: Introductionmentioning

confidence: 99%

Clinical Outcomes of a Neurocognitive Screening Program for Pediatric Sickle Cell Disease

Karst

Miller

Heffelfinger

et al. 2020

Preprint

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Objective: Sickle cell disease (SCD) is associated with neurocognitive and academic impairment. Routine screening is recommended to evaluate for possible concerns. This paper describes results from a neurocognitive screening battery and evaluates relationships with psychosocial and medical variables. Methods: Participants included 61 patients stratified among three age groups, including ages 6-7, ages 11-12, and ages 15-16. Patients completed a screening assessing cognitive performance, academic functioning, and attention (older subjects completed a task of executive function) and a measure assessing HRQL. Caregivers completed a clinical interview and forms evaluating HRQL, executive functioning, and attention. The impact of relevant medical variables and socioeconomic status (SES) was also considered. Results: Between 20% and 33% of participants scored [?] 1 SD below age-based means on intellectual subtests, and between 31 and 48% scored [?] 1 SD below grade-based means on academic subtests. Attention concerns were noted in 25% of patients, while 20-31% of parents reported executive function concerns. Neither disease subtype nor hemoglobin were associated with cognitive or academic functioning. There was an association between mean corpuscular volume (MCV) and both cognitive abilities and psychosocial health. Cognitive scores were correlated with SES, suggesting an impact of socioeconomic disparities on performance. Conclusions: Sickle Cell Disease negatively impacts cognitive and academic functioning both directly and indirectly due to pain, missed school, and through socioeconomic and racial disparities. These concerns may increase over time as disease processes and medication compliance often worsen. Longitudinal research is needed to further explore these trends.

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School Performance and Disease Interference in Adolescents with Sickle Cell Disease

Cited by 26 publications

References 37 publications

Integration experiences of student and qualified nurses with disabilities who graduated from selected KwaZulu-Natal nursing education institutions: An exploratory case study

Integration experiences of student and qualified nurses with disabilities who graduated from selected KwaZulu-Natal nursing education institutions: An exploratory case study

Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study

Clinical Outcomes of a Neurocognitive Screening Program for Pediatric Sickle Cell Disease

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