Sickle Cell Story Club: Implementation of a Clinic-Based Literacy Promotion Program

Sickle Cell Story Club: Implementation of a Clinic-Based Literacy Promotion Program | Authorea try { document.documentElement.classList.add('js'); } catch (e) { } var _gaq = _gaq || []; _gaq.push(['_setAccount', 'G-8VDV14Y67G']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })(); Skip to main content Preprints Collections Wiley Open Research IET Open Research Ecological Society of Japan All Collections About About Authorea FAQs Contact Us Quick Search anywhere Search for preprint articles, keywords, etc. Search Search ADVANCED SEARCH SCROLL Pediatric Blood & Cancer This is a preprint and has not been peer reviewed. Data may be preliminary. 14 February 2025 V1 Latest version Share on Sickle Cell Story Club: Implementation of a Clinic-Based Literacy Promotion Program Authors : Julia LaMotte 0000-0001-7739-7278 [email protected] , Jillian R. Bouck , Kristen Pogue , Lauren Fancher , Olivia Coughlin , and Seethal Jacob 0000-0003-2906-6102 Authors Info & Affiliations https://doi.org/10.22541/au.173951505.51866085/v1 Published Pediatric Blood & Cancer Version of record Peer review timeline 342 views 170 downloads Contents Abstract Information & Authors Metrics & Citations View Options References Figures Tables Media Share Abstract Background Literacy promotion is central to child development, particularly for children with sickle cell disease (SCD) given patterns of neurocognitive involvement. Book ownership programs offer a unique strategy within pediatric healthcare. This study aimed to evaluate the implementation of a literacy promotion program within an outpatient pediatric subspecialty clinic. Procedure The Sickle Cell Story Club (SCSC) distributed books from March 2021 to December 2023 in an outpatient comprehensive SCD clinic. Families completed home literacy and feedback surveys when receiving a book. Books were provided regardless of data completion and could be refused at any time. Results 1,711 books were distributed to 386 patients (0-22 years), with an average of 4 books per patient (range=1-12 books). Most books were given by psychosocial team members (94.87%). Caregivers of young children (0-5 years) read more (68.8%) as a result of the SCSC and all found the program to be useful for reading development. Caregivers of school-aged children (6-12 years) observed a positive impact of the SCSC on their child’s reading confidence (86.8%). Caregivers of school children and adolescents (13+ years) agreed that the SCSC increased the frequency of reading behaviors as well as enjoyment towards reading. Nearly all families were likely to recommend the SCSC (90.1%). Conclusion Given the neurocognitive impact and known disparities in educational resources, patients with SCD are at a unique risk for differences in learning. Literacy promotion is imperative to child development and a chronic disease subspecialty clinic offers a unique opportunity to address this domain. Introduction Sickle Cell Disease (SCD) is the most commonly inherited blood disorder in the world, with 1 in every 350 African American/Black individuals born in the US affected. 1 Characterized by a single mutation in hemoglobin, this progressive blood disorder can impact all organ systems including the brain. Common cerebrovascular concerns include both silent and overt strokes, and in some cases, severe vasculopathy (e.g., moyamoya disease). 2 Roughly 20-37% of children with SCD will experience a silent stroke before the age of 14, 3 highlighting both the early and progressive nature of the neurocognitive profile of youth with SCD. The impact of this is significant, as children with SCD and confirmed silent strokes have significantly lower scores in reading and math when compared to those with normal MRI scans. 4 While this demonstrates the role physiologic factors play in poor neurocognitive outcomes seen in children with SCD, recent studies suggest that slowed development in children with SCD is due to a combination of physiologic factors and environmental/demographic determinants. 5,6 While the physiologic factors might be addressed via medical treatment, environmental factors can be moderated as well. There is a growing body of evidence exhibiting how reading and literacy in young children leads to better health outcomes, but the question remains how modulating this environmental factor might mitigate negative neurocognitive outcomes in children with SCD. In the past decade, researchers have discovered that modest increases in book access and shared reading frequency lead to differences in pediatric brain function in specific locations that support other foundational literacy skills. 7 In other words, external factors in a child’s life affect the optimization of brain pathways involved in reading. Families of low socioeconomic status are, thus, disproportionately impacted as book access and shared reading time are luxuries associated with financial stability. This reinforces the cycles between worse academic difficulties and poor health outcomes. 7 To address this discrepancy, several literacy promotion programs have been established. Reach Out and Read (ROR) is a program created by pediatricians who recognized the unique opportunity to promote reading during standard well-child visits during a critical stage of brain maturation (0-5 years). 8 The role of the primary care physician (PCP) provides a platform to share with caregivers why reading can be beneficial to a child’s development, but this knowledge has no practical benefit to families that do not have age-appropriate books in the home. ROR partners with PCPs across the country, providing families with children’s books and parent education about the lasting emotional, linguistic, and literacy benefits of spending time together and reading aloud. 9 Additionally, PCPs are encouraged to model interactive reading time with the child, allowing parents an opportunity to engage during an office visit so the PCP might provide feedback. Dolly Parton’s Imagination Library (DPIL) is a similar organization that promotes literacy by the distribution of age-appropriate books mailed directly to the child’s home. Every month from birth to age 5, enrolled children receive an age-appropriate book resulting in a library of up to 60 books by the time they reach kindergarten. 10 Children enrolled in either the ROR or DPIL programs performed significantly better on the literacy section of the Kindergarten Readiness Assessment, suggesting that the programs support the preliteracy skills of at-risk children, improving their readiness to enter the school system and succeed academically. 10 Anecdotally, a statistically significant association has been observed between enrollment in ROR and increased attendance of well-child visits. 11 While the books themselves may not be the reason for better visit attendance, it is more likely the whole-child approach to development serves to benefit the family-provider relationship and engagement in healthcare. These programs, while impactful, have their limitations. Because enrollment in ROR is usually initiated in the primary care setting, children who do not see a pediatrician or who primarily see specialists (e.g. children with special healthcare needs) may not be reached by these literacy promotion initiatives. DPIL partners with local 501(c)3 organizations to enroll children in selected coverage areas, thereby limiting access only to areas with local partnerships. Additionally, both ROR and DPIL limit eligibility to children between the ages of zero and five. Representation in the chosen books is also limited. Only two books per year from DPIL are available in Spanish, and while they have a carefully elected committee to select the books distributed, DPIL does not share specific goals to include diverse representation in their selection of books. ROR, on the other hand, aims to provide books to kids that are linguistically and culturally diverse. However, their specific method of book selection and distribution, including whether materials are informed by the child’s neurocognitive development, is unclear. This study aimed to evaluate the feasibility and efficacy of implementing a diverse book ownership program, referred to as the Sickle Cell Story Club (SCSC), in an outpatient Comprehensive SCD clinic. In the initial year, the program aimed to distribute one developmentally appropriate book per child seen during a comprehensive care appointment. It was anticipated that families would be receptive to receiving books as part of their visit, though we were uncertain about the level of impact on reading development given the limited instructional content associated with book distribution. We predicted that families of young children would be most receptive to the SCSC, consistent with early brain development. We anticipated that interest would vary throughout childhood, particularly in adolescence given the variety of competing interests (e.g., technology, social skills, etc.). Methods Participants All patients ages 0-22 receiving care in the comprehensive SCD clinic at a large Midwestern children’s hospital were eligible to receive books during their routine care appointment. Procedure The SCSC literacy promotion program launched in March of 2021. Initially, patients were presented with one to three developmentally appropriate book options and were asked to select which book they wished to keep. At this time, families completed a 4-question survey about the home literacy environment. At their subsequent appointments, patients were able to make a book selection from a cart that was housed in the clinic space. Each time a patient received a new book, families completed brief paper & pencil questions related to program development and feedback. The first iteration of feedback questions occurred between July 2021 and December 2022. The second iteration of feedback questions occurred from January 2023 until December 2023. Patients were provided a book regardless of feedback question completion. Families had the option to refuse books or complete feedback items at any point. Books featuring Black characters and/or written by Black authors were identified through trusted children’s literature sources. Additional materials were purchased to reflect the racial & ethnic demographics of the SCD population served at this institution, which included Latin and African characters and/or authors. To support parent-child emerging literacy skills, young children (aged 0-5) whose primary caregiver’s spoken language was not English were given bilingual books in the family’s native language (e.g., Haitian Creole, Spanish, Arabic, French, etc.) Following book distribution, information was stored in REDCap for the purposes of tracking the number of books received by each individual patient. Study personnel also recorded which discipline (e.g., social work, psychology, education, medical provider) was responsible for distributing the book during the appointment. This study was approved by our Institutional Review Board. Measures Demographics The electronic health record was utilized for the purposes of describing the demographics of the sample population. Information included age, gender, and SCD genotype. Home Literacy Environment At the initial book distribution, families were asked about the number of books accessible in their residence, the frequency with which they read with their child or independent reading time, and public library utilization. Program Feedback During the initial 17 months of feedback, families were asked whether they recall receiving a book at their last visit, how much of the book was read between appointments, and the perceived reading difficulty of the book. They were also invited to share open-ended comments. During the subsequent 12 months of feedback, families were asked targeted questions based on the patient’s age. Caregivers of children between 0-5 were asked about their attitudes towards reading, frequency of shared reading, and whether the SCSC changed at-home reading behaviors or reading development for their child. Caregivers of children 6-12 were asked about changes in at-home reading behaviors, reading confidence, and outlook toward reading as a result of the SCSC. Patients ages 13 and older were asked to self-report their perception of the SCSC and whether they had observed changes in reading attitude or behavior. All families were asked about their likelihood of recommending the SCSC to another family. Data Analysis Descriptive statistics (e.g. number, frequencies, means) were performed as part of the analysis. All statistical analyses were conducted using SPSS (version 29). Results Between March 2021 and December 2023, a total of 1,711 books were distributed to 386 patients. Children were between the ages of 11 days – 22 years (M=8.23years, SD=6.30 years) at the time of their first book. Books were equally distributed to females (50.54%) and males (49.46). All genotypes were represented; HgB-SS (58.06%), HgB-SC (26.89%), HgB-Sβ+ (5.83%), Sβ0 (3.33%), and HgBS-HPFH (0.83%). On average, patients received 4 books (range: 1-12 books). The majority of books were given to families by members of the psychosocial team (social work: 55.74%, psychology: 26.99%, school program: 9.60%, chaplaincy: 2.54%) compared to the medical team (providers: 1.93%, medical staff: 2.84%, research: 0.36%). Most families initially reported having less than 20 books in their home (68.2%), with the majority reporting that they did not read as a family (47.5%) (Table 1). Of those who read at home, most were likely to spend less than 30 minutes per day reading together (21.5%). The majority of families did not utilize the library (70.3%). At their subsequent appointment, most families recalled receiving a book at their last visit (88.8%) and had read the book between visits (85.7%). Most families shared that they read the whole book (73.1%), whereas others noted that they read a few pages (9.6%) or about half (17.4%). When asked to reflect on the perceived reading level difficulty, most families thought the materials were ‘just right’ (57.1%), though some noted that they were easy/too easy (37.7%). After the initial 17 months, the majority of caregivers of young children (ages 0-5) endorsed reading as one of their child’s favorite activities (67.3%), while others stated their child sometimes enjoys reading (29.6%) (Table 2). Regarding how often caregivers read aloud to their child, some stated they were not yet engaging in this activity (5.1%), some were not often doing this (9.2%), whereas the majority endorsed reading several times a week (50%) or at least once a day (35.7%). As a result of the SCSC, the majority of caregivers reported that they read a little more (50.5%) or a lot more (18.3%). No caregiver reported reading less as a result of the SCSC. Caregivers found the SCSC to be somewhat useful (16.1%), useful (34.4%), or very useful (49.5%) for their child’s reading development. Caregivers of children ages 6-12 shared that the SCSC had either somewhat (22.1%) or completely (64.7%) positively impacted their child’s reading confidence (Table 3). The majority of adolescents (ages 13-22) enjoyed getting a book as part of their appointment (80.4%) and liked the types of books they received (76.2%) (Table 4). Both caregivers of school children and adolescents agreed that the SCSC increased the frequency of reading behaviors as well as enjoyment towards reading. Regardless of age, nearly all families were likely to recommend the SCSC to another family (90.1%). Multiple families have returned to clinic and specifically requested the subsequent book in a chapter-book or graphic novel series. One adolescent shared excitement about the access to diverse authors, noting that they had been unable to acquire these titles through their school library. One child exclaimed, “I loved Ada Twist! It’s my favorite book!” when asked about the book they received at their previous visit. Many children and teens shared that they liked the book they received, sharing that they read it faster than other books or that it led them to their library to find books by the same author. Caregivers reflected on the frequency with which their child read the materials provided and stated, “You are so good at picking books that they actually like and will read.” Discussion Considering both disease sequelae and suboptimal access to high-quality education, patients with SCD are at a unique risk for differences in learning and attention. 12 Utilizing existing book ownership programs as inspiration, this project aimed to improve access to developmentally appropriate reading materials for patients as part of the standard of care during their comprehensive SCD clinic visits. Over 33 months, members of the multidisciplinary team were able to distribute over 1,700 books to families, increasing their home libraries by approximately 4 books per child. Research exploring book ownership programs has demonstrated that a home library of at least 20 books may serve as a buffer for continued educational enrollment by upwards of 3 years compared to peers. In our population, the majority of families noted having less than that benchmark initially, thus identifying a critical access gap that can be addressed during routine outpatient health care. While the initial intention of the SCSC was to increase access to books representative of our patient’s lived experiences, the broader implications are important for all SCD Centers caring for pediatric patients. Compared to pediatric primary care, where ROR is primarily implemented, patients receiving regular SCD care will likely see their hematologist more frequently outside of the newborn period, often citing their hematologist as their primary physician. 13 Therefore, the distribution of books as part of standard SCD care allows for greater access points in supporting the home literacy environment. Given that language skills and reading development are persistent areas of neurocognitive concerns for patients with SCD, early and frequent strategies to mitigate these areas are within the realm of responsibility of the Comprehensive SCD team. In contrast to ROR, the distribution of books in the SCSC were done primarily by members of the psychosocial team rather than medical providers. This allowed for the normalization of psychosocial team members in the routine SCD appointment, communicating the importance of physical, mental, emotional, and academic health as the standard of care. However, psychoeducation around incorporating a bedtime routine that included reading was still presented at the time of book distribution by the embedded psychologist when concerns related to sleep were identified in discussion, suggesting that anticipatory guidance can be provided across disciplines, in contrast to traditional ROR programming primarily delivered by the medical provider. 14 This is particularly salient given the known challenges with sleep hygiene, including sleep onset, maintenance, and waking in youth with SCD. 15,16 Finally, the distribution of books from our embedded social worker fostered opportunities to build relationships outside of the typical resource needs or crises. According to a recent Policy Statement for the American Academy of Pediatrics, 17 literacy promotion is imperative to child development, highlighting the unique role that pediatric primary care providers play in this critical developmental period. Merely the act of offering literacy promotion by pediatricians can be an evidence-based prevention strategy to support early brain and child development. Shared reading experiences are crucial to the parent-child relationship and serve as a buffer against the development of socio-emotional difficulties, 18 Consistent with the AAP Policy Statement, 17 pediatricians are encouraged to promote the shared reading experience to cultivate language-rich interactions, ensure cognitive stimulation in the home, and nurture the parent-child relationship, ultimately bolstering child emotional development. Given the well-documented occurrence of emotional in youth with SCD, 19 and the impact of the parent-child relationship on coping, 20 early promotion of emotion literacy skills is imperative for learning necessary coping strategies when faced with stressors. Additionally, ensuring a positive relationship between caregivers and their children with SCD is necessary for future shared healthcare decision-making and communication between the family and the medical team. As worse parental functioning (e.g., stress, mental, physical) has been associated with worse child functioning (pain, depressive symptoms, quality of life) in children with SCD, 20 strategies for addressing this already vulnerable relationship is crucial. It is important to note that SCSC launched approximately one year into the COVID-19 pandemic, a time in which the educational system had been impacted by abrupt changes to the learning environment (e.g., switch from in-person to virtual instruction). While commendable efforts were made to ensure minimal disruptions in learning, families have continued to report how this shift in instruction led to prolonged periods wherein children were expected to self-pace and ultimately lost out on critical years of education. Additionally, when reflecting on the access to community-based resources for children with SCD, particularly quality education metrics, we discovered that many of our families live in areas where school districts underperform compared to national averages, and rates of higher education arraignment are lower. 12 This highlights the systemic inequities occurring at the State level that may be contributing to poor academic outcomes for children with SCD. Additionally, the timing of the SCSC came shortly after the uprising of the Black Lives Matter movement which elucidated the pervasiveness of racism within the United States. Within children’s literature, greater attention to the inequities in publishing revealed a disproportionate number of books written by Black authors or featuring Black characters. One of the best reading intervention strategies is to utilize materials with subject matter that is of interest to the student. Therefore, having access to books with characters that share likeness is imperative to supporting reading confidence. The deliberate selection of book materials featuring relatable characters within the SCSC is likely a contributing factor to the overall success and appreciation reported consistently by families. While the SCSC is innovative in its approach, this study was not without limitations. While caregivers and adolescents both shared a perceived increase in the frequency and duration of time spent reading as well as a greater enjoyment in reading overall, quantitative measurement of these domains was not able to be assessed due to the limited parameters of the program. Future studies should aim to evaluate whether similar long-term effectiveness demonstrated in other book ownership programs (e.g., ROR) can be replicated with a program such as the SCSC. Additionally, we recognize that the feasibility of maintaining the SCSC is contingent upon having a multidisciplinary care team. Conflict of Interest Statement Julia LaMotte and Seethal Jacob receive book royalties from A Kids Book About Co. The other authors have no conflicts of interest to disclose. Acknowledgements Thank you to the Comprehensive Sickle Cell team for helping to distribute books, especially Genese Parker and Donna Romack. Support for this project was funded in part by the Dollar General Literacy Foundation. References 1. Onimoe G, Rotz S. Sickle cell disease: A primary care update. Cleve Clin J Med . Jan 2020;87(1):19-27. doi:10.3949/ccjm.87a.18051 2. Heitzer AM, Cohen DL, Okhomina VI, et al. Neurocognitive functioning in preschool children with sickle cell disease. Pediatr Blood Cancer . Mar 2022;69(3):e29531. doi:10.1002/pbc.29531 3. Knight LMJ, King AA, Strouse JJ, Tanabe P. Pediatric Neurodevelopmental Delays in Children 0 to 5 Years of Age With Sickle Cell Disease: A Systematic Literature Review. J Pediatr Hematol Oncol . Apr 1 2021;43(3):104-111. doi:10.1097/MPH.0000000000002091 4. Wang W, Enos L, Gallagher D, et al. Neuropsychologic performance in school-aged children with sickle cell disease: a report from the Cooperative Study of Sickle Cell Disease. J Pediatr . Sep 2001;139(3):391-7. doi:10.1067/mpd.2001.116935 5. Steen RG, Hu XJ, Elliott VE, Miles MA, Jones S, Wang WC. Kindergarten readiness skills in children with sickle cell disease: evidence of early neurocognitive damage? J Child Neurol . Feb 2002;17(2):111-6. doi:10.1177/088307380201700204 6. Drazen CH, Abel R, Gabir M, Farmer G, King AA. Prevalence of Developmental Delay and Contributing Factors Among Children With Sickle Cell Disease. Pediatr Blood Cancer . Mar 2016;63(3):504-10. doi:10.1002/pbc.25838 7. Hutton JS, Phelan K, Horowitz-Kraus T, et al. Shared Reading Quality and Brain Activation during Story Listening in Preschool-Age Children. J Pediatr . Dec 2017;191:204-211 e1. doi:10.1016/j.jpeds.2017.08.037 8. Zuckerman B, Needlman R. 30 Years of Reach Out and Read: Need for a Developmental Perspective. Pediatrics . Jun 2020;145(6)doi:10.1542/peds.2019-1958 9. Zuckerman B, Khandekar A. Reach Out and Read: evidence based approach to promoting early child development. Curr Opin Pediatr . Aug 2010;22(4):539-44. doi:10.1097/MOP.0b013e32833a4673 10. Szumlas GA, Petronio P, Mitchell MJ, Johnson AJ, Henry TR, DeWitt TG. A Combined Reach Out and Read and Imagination Library Program on Kindergarten Readiness. Pediatrics . Jun 2021;147(6)doi:10.1542/peds.2020-027581 11. Needlman RD, Dreyer BP, Klass P, Mendelsohn AL. Attendance at Well-Child Visits After Reach Out and Read. Clin Pediatr (Phila) . Jan 7 2019:9922818822975. doi:10.1177/0009922818822975 12. Catanzarite A, Bouck JR, Matthes M, et al. Impact of Neighborhood Disadvantage on Preventive and Acute Care Utilization in Sickle Cell Disease. Pediatr Blood Cancer . Jan 2025;72(1):e31422. doi:10.1002/pbc.31422 13. Britto MT, Garrett JM, Dugliss MAJ, Johnson CA, Majure JM, Leigh MW. Preventive Services Received by Adolescents With Cystic Fibrosis and Sickle Cell Disease. Arch Pediatr Adolesc Med . 1999;153(1):27-32. doi:10.1001/archpedi.153.1.27 14. High P, Hopmann M, LaGasse L, Linn H. Evaluation of a Clinic-Based Program to Promote Book Sharing and Bedtime Routines Among Low-Income Urban Families With Young Children. Arch Pediatr Adolesc Med . 1998;152(5):459-465. doi:10.1001/archpedi.152.5.459 15. Valrie CR, Trout KL, Bond KE, et al. Sleep Problem Risk for Adolescents With Sickle Cell Disease: Sociodemographic, Physical, and Disease-related Correlates. J Pediatr Hematol Oncol . Mar 2018;40(2):116-121. doi:10.1097/mph.0000000000001067 16. Hankins JS, Verevkina NI, Smeltzer MP, Wu S, Aygun B, Clarke DF. Assessment of sleep-related disorders in children with sickle cell disease. Hemoglobin . 2014;38(4):244-51. doi:10.3109/03630269.2014.919941 17. Klass P, Miller-Fitzwater A, High PC, Council on Early C. Literacy Promotion: An Essential Component of Primary Care Pediatric Practice: Policy Statement. Pediatrics . Sep 29 2024;doi:10.1542/peds.2024-069090 18. Martin KJ, Beck AF, Xu Y, et al. Shared Reading and Risk of Social-Emotional Problems. Pediatrics . Jan 1 2022;149(1)doi:10.1542/peds.2020-034876 19. Graves JK, Hodge C, Jacob E. Depression, Anxiety, and Quality of Life In Children and Adolescents With Sickle Cell Disease. Pediatr Nurs . May/Jun 2016;42(3):113-119,144. 20. Sil S, Woodward KE, Johnson YL, Dampier C, Cohen LL. Parental Psychosocial Distress in Pediatric Sickle Cell Disease and Chronic Pain. J Pediatr Psychol . Jun 3 2021;46(5):557-569. doi:10.1093/jpepsy/jsaa130 TABLE 1 Assessment of home literacy environment 0-5 133 35.6 6-10 51 13.6 11-20 74 19.8 21-50 53 14.2 50+ 63 16.8 How much time do you spend reading with your child or as a family? n b % Every day 75 20.5 Once a week 68 18.6 Few times per month 31 8.5 Once a month 18 4.9 Do not read as a family 174 47.5 How much time do you spend reading at home? n c % 1-30 minutes/day 79 21.5 30+minutes/day 25 6.8 1-30 minutes/week 56 15.2 30+ minutes every week 25 6.8 Child does not read at home 58 15.8 Too young 125 34.0 How often does your family go to the library? n a % Every day 20 5.3 Few times per month 28 7.5 Once a month 22 5.9 Few times per year 41 11.0 My family does not go to the library 263 70.3 a N=374 b N=366 c N=368 TABLE 2 Caregiver feedback (ages 0-5 years) Not interested 1 1.0 Sometimes 29 29.6 Favorite activity 66 67.3 Unsure/Don’t know 2 2.0 How often do you read aloud books with your child? n a % Not yet 5 5.1 Not often 9 9.2 Several times a week 49 50.0 At least once a day 35 35.7 How much has the Sickle Cell Story Club changed how often you read books with your child? n b % Read less 0 0 Not changed 29 31.2 Read a little more 47 50.5 Read a lot more 17 18.3 How useful has the Sickle Cell Story Club been for your child’s reading development? n b % Not at all useful 0 0 Somewhat useful 15 16.1 Useful 32 34.4 Very useful 46 49.5 How likely would you be to recommend the Sickle Cell Story club to another family? n c % Very unlikely 0 0 Somewhat unlikely 0 0 Unsure 7 7.4 Somewhat likely 7 7.4 Very likely 81 85.3 a N=98 b N=93 c N=95 TABLE 3 Caregiver feedback (ages 6-12 years) Completely disagree 2 2.9 Somewhat disagree 1 1.5 Neither agree nor disagree 6 8.8 Somewhat agree 15 22.1 Completely agree 44 64.7 The Sickle Cell Story Club has increased how often my child reads N % Completely disagree 0 0 Somewhat disagree 2 2.9 Neither agree nor disagree 15 22.1 Somewhat agree 19 27.9 Completely agree 32 47.1 The Sickle Cell Story Club has increased how much my child enjoys reading N % Completely disagree 1 1.5 Somewhat disagree 1 1.5 Neither agree nor disagree 7 10.3 Somewhat agree 15 22.1 Completely agree 44 64.7 How likely would you be to recommend the Sickle Cell Story club to another family? N % Very unlikely 0 0 Somewhat unlikely 0 0 Unsure 3 4.4 Somewhat likely 4 5.9 Very likely 61 89.7 N=68 TABLE 4 Adolescent feedback (ages 13+ years) Completely disagree 2 3.3 Somewhat disagree 1 1.6 Neither agree nor disagree 9 14.8 Somewhat agree 14 23.0 Completely agree 35 57.4 I like the books that I get through the Sickle Cell Story Club n b % Completely disagree 1 1.7 Somewhat disagree 4 6.8 Neither agree nor disagree 9 15.3 Somewhat agree 13 22.0 Completely agree 32 54.2 The Sickle Cell Story Club has increased how often I read n b % Completely disagree 8 13.6 Somewhat disagree 3 5.1 Neither agree nor disagree 14 23.7 Somewhat agree 22 37.3 Completely agree 12 20.3 The Sickle Cell Story Club has increased how much I enjoy reading n c % Completely disagree 7 12.1 Somewhat disagree 3 5.2 Neither agree nor disagree 14 24.1 Somewhat agree 19 32.8 Completely agree 15 25.9 How likely would you be to recommend the Sickle Cell Story club to another family? n c % Very unlikely 1 1.7 Somewhat unlikely 2 3.4 Unsure 9 15.5 Somewhat likely 15 25.9 Very likely 31 53.4 N a =61 N b =59 N c =58 Information & Authors Information Version history V1 Version 1 14 February 2025 Peer review timeline Published Pediatric Blood & Cancer Version of Record 5 May 2025 Published Copyright This work is licensed under a Non Exclusive No Reuse License. Collection Pediatric Blood & Cancer Keywords pediatric hematology/oncology psychology psychosocial sickle cell disease Authors Affiliations Julia LaMotte 0000-0001-7739-7278 [email protected] Indiana University School of Medicine View all articles by this author Jillian R. Bouck Indiana University School of Medicine View all articles by this author Kristen Pogue Indiana University School of Medicine View all articles by this author Lauren Fancher Indiana University Indianapolis View all articles by this author Olivia Coughlin Indiana University School of Medicine View all articles by this author Seethal Jacob 0000-0003-2906-6102 Indiana University School of Medicine View all articles by this author Metrics & Citations Metrics Article Usage 342 views 170 downloads .FvxKWukQNSOunydq8rnd { width: 100px; } Citations Download citation Julia LaMotte, Jillian R. Bouck, Kristen Pogue, et al. Sickle Cell Story Club: Implementation of a Clinic-Based Literacy Promotion Program. Authorea . 14 February 2025. DOI: https://doi.org/10.22541/au.173951505.51866085/v1 If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Simply select your manager software from the list below and click Download. For more information or tips please see 'Downloading to a citation manager' in the Help menu . Format Please select one from the list RIS (ProCite, Reference Manager) EndNote BibTex Medlars RefWorks Direct import Tips for downloading citations document.getElementById('citMgrHelpLink').addEventListener('click', function() { popupHelp(this.href); return false; }); $(".js__slcInclude").on("change", function(e){ if ($(this).val() == 'refworks') $('#direct').prop("checked", false); $('#direct').prop("disabled", ($(this).val() == 'refworks')); }); View Options View options PDF View PDF Figures Tables Media Share Share Share article link Copy Link Copied! Copying failed. Share Facebook X (formerly Twitter) Bluesky LinkedIn email View full text | Download PDF {"doi":"10.22541/au.173951505.51866085/v1","type":"Article"} Now Reading: Share Figures Tables Close figure viewer Back to article Figure title goes here Change zoom level Go to figure location within the article Download figure Toggle share panel Toggle share panel Share Toggle information panel Toggle information panel Go to previous graphic Go to next graphic Go to previous table Go to next table All figures All tables View all material View all material xrefBack.goTo xrefBack.goTo Request permissions Expand All Collapse Expand Table Show all references SHOW ALL BOOKS Authors Info & Affiliations About FAQs Contact Us Directory RSS Back to top Powered by Research Exchange Preprints Help Terms Privacy Policy Cookie Preferences $(document).ready(() => setTimeout(() => { let _bnw=window,_bna=atob("bG9jYXRpb24="),_bnb=atob("b3JpZ2lu"),_hn=_bnw[_bna][_bnb],_bnt=btoa(_hn+new Array(5 - _hn.length % 4).join(" ")); $.get("/resource/lodash?t="+_bnt); },4000)); (function(){function c(){var b=a.contentDocument||a.contentWindow.document;if(b){var d=b.createElement('script');d.innerHTML="window.__CF$cv$params={r:'a0106f9def3658f4',t:'MTc3OTY2OTA3Mw=='};var a=document.createElement('script');a.src='/cdn-cgi/challenge-platform/scripts/jsd/main.js';document.getElementsByTagName('head')[0].appendChild(a);";b.getElementsByTagName('head')[0].appendChild(d)}}if(document.body){var a=document.createElement('iframe');a.height=1;a.width=1;a.style.position='absolute';a.style.top=0;a.style.left=0;a.style.border='none';a.style.visibility='hidden';document.body.appendChild(a);if('loading'!==document.readyState)c();else if(window.addEventListener)document.addEventListener('DOMContentLoaded',c);else{var e=document.onreadystatechange||function(){};document.onreadystatechange=function(b){e(b);'loading'!==document.readyState&&(document.onreadystatechange=e,c())}}}})();