Brennan-Cook J, Bonnabeau E, Aponte R, Augustin C, Tanabe P. Barriers to care for persons with sickle cell disease: the case manager’s opportunity to improve patient outcomes. Prof Case Manag. 2018;23(4):213–9.
CDC. Data & Statistics on Sickle Cell Disease [updated 12/16/2020]. Available from: https://www.cdc.gov/ncbddd/sicklecell/data.html. Accessed Oct 2021.
Dale JC, Cochran CJ, Roy L, Jernigan E, Buchanan GR. Health-related quality of life in children and adolescents with sickle cell disease. J Pediatr Health Care. 2011;25(4):208–15.
Wang CJ, Kavanagh PL, Little AA, Holliman JB, Sprinz PG. Quality-of-care indicators for children with sickle cell disease. Pediatrics. 2011;128(3):484–93.
Kanter J, Kruse-Jarres R. Management of sickle cell disease from childhood through adulthood. Blood Rev. 2013;27(6):279–87.
Grosse SD, Schechter MS, Kulkarni R, Lloyd-Puryear MA, Strickland B, Trevathan E. Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics. 2009;123(1):407–12.
Leschke J, Panepinto JA, Nimmer M, Hoffmann RG, Yan K, Brousseau DC. Outpatient follow-up and rehospitalizations for sickle cell disease patients. Pediatr Blood Cancer. 2012;58(3):406–9.
Raphael JL, Kamdar A, Wang T, Liu H, Mahoney DH, Mueller BU. Day hospital versus inpatient management of uncomplicated vaso-occlusive crises in children with sickle cell disease. Pediatr Blood Cancer. 2008;51(3):398–401.
Liem RI, O'Suoji C, Kingsberry PS, Pelligra SA, Kwon S, Mason M, et al. Access to patient-centered medical homes in children with sickle cell disease. Matern Child Health J. 2014;18(8):1854–62.
Boulet SL, Yanni EA, Creary MS, Olney RS. Health status and healthcare use in a national sample of children with sickle cell disease. Am J Prev Med. 2010;38(4 Suppl):S528–35.
Haywood C Jr, Beach MC, Lanzkron S, Strouse JJ, Wilson R, Park H, et al. A systematic review of barriers and interventions to improve appropriate use of therapies for sickle cell disease. J Natl Med Assoc. 2009;101(10):1022–33.
Mainous AG 3rd, Tanner RJ, Harle CA, Baker R, Shokar NK, Hulihan MM. Attitudes toward management of sickle cell disease and its complications: a national survey of academic family physicians. Anemia. 2015;2015:853835.
Shankar SM, Arbogast PG, Mitchel E, Ding H, Wang WC, Griffin MR. Impact of proximity to comprehensive sickle cell center on utilization of healthcare services among children with sickle cell disease. Pediatr Blood Cancer. 2008;50(1):66–71.
Bemrich-Stolz CJ, Halanych JH, Howard TH, Hilliard LM, Lebensburger JD. Exploring adult care experiences and barriers to transition in adult patients with sickle cell disease. Int J Hematol Ther. 2015;1(1):10.15436/2381–1404.15.003. https://doi.org/10.15436/2381-1404.15.003.
Crosby LE, Modi AC, Lemanek KL, Guilfoyle SM, Kalinyak KA, Mitchell MJ. Perceived barriers to clinic appointments for adolescents with sickle cell disease. J Pediatr Hematol Oncol. 2009;31(8):571–6.
Hoegy D, Guilloux R, Bleyzac N, Gauthier-Vasserot A, Cannas G, Bertrand Y, et al. Sickle cell disease perceptions of caregivers, adolescent, and adult patients: barriers and facilitators to medical care adherence. J Adv Nurs. 2020;76(9):2391–400.
Marcin JP, Ellis J, Mawis R, Nagrampa E, Nesbitt TS, Dimand RJ. Using telemedicine to provide pediatric subspecialty care to children with special health care needs in an underserved rural community. Pediatrics. 2004;113(1):1–6.
Jacob SA, Carroll AE, Bennett WE Jr. A feasibility study of telemedicine for paediatric sickle cell patients living in a rural medically underserved area. J Telemed Telecare. 2021;27(7):431–35. https://doi.org/10.1177/1357633X19883558.
Woods K, Kutlar A, Grigsby RK, Adams L, Stachura ME. Primary-care delivery for sickle cell patients in rural Georgia using telemedicine. Telemed J. 1998;4(4):353–61.
Woods KF, Johnson JA, Kutlar A, Daitch L, Stachura ME. Sickle cell disease telemedicine network for rural outreach. J Telemed Telecare. 2000;6(5):285–90.
Pletcher BA, Rimsza ME, Cull WL, Shipman SA, Shugerman RP, O'Connor KG. Primary care pediatricians’ satisfaction with subspecialty care, perceived supply, and barriers to care. J Pediatr. 2010;156(6):1011–5.e1.
Skinner AC, Slifkin RT. Rural/urban differences in barriers to and burden of care for children with special health care needs. J Rural Health. 2007;23(2):150–7.
DeJonckheere M, Vaughn LM. Semistructured interviewing in primary care research: a balance of relationship and rigour. Fam Med Community Health. 2019;7(2):e000057.
Seid M, Sobo EJ, Gelhard LR, Varni JW. Parents’ reports of barriers to care for children with special health care needs: development and validation of the barriers to care questionnaire. Ambul Pediatr. 2004;4(4):323–31.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
Grady MP. Qualitative and action research : a practitioner handbook. Bloomington: Phi Delta Kappa Educational Foundation; 1998. p. 55.
Toledano-Toledano F, Dominguez-Guedea MT. Psychosocial factors related with caregiver burden among families of children with chronic conditions. Biopsychosoc Med. 2019;13:6.
Kayaalp A, Page KJ, Rospenda KM. Caregiver burden, work-family conflict, family-work conflict, and mental health of caregivers: a mediational longitudinal study. Work Stress. 2021;35(3):217–40.
Penning MJ, Wu Z. Caregiver stress and mental health: impact of caregiving relationship and gender. Gerontologist. 2016;56(6):1102–13.
de Oliveira GR, Neto JF, de Camargo SM, Lucchetti ALG, Espinha DCM, Lucchetti G. Caregiving across the lifespan: comparing caregiver burden, mental health, and quality of life. Psychogeriatrics. 2015;15(2):123–32.
Pitchik HO, Tofail F, Akter F, Sultana J, Shoab A, Huda TMN, et al. Effects of the COVID-19 pandemic on caregiver mental health and the child caregiving environment in a low-resource, rural context. Child Dev. 2021;92(5):e764–e80.
Grosse J, Treml J, Kersting A. Impact of caregiver burden on mental health in bereaved caregivers of cancer patients: a systematic review. Psychooncology. 2018;27(3):757–67.
Chang HY, Chiou CJ, Chen NS. Impact of mental health and caregiver burden on family caregivers’ physical health. Arch Gerontol Geriatr. 2010;50(3):267–71.
Russell BS, Hutchison M, Tambling R, Tomkunas AJ, Horton AL. Initial challenges of caregiving during COVID-19: caregiver burden, mental health, and the parent-child relationship. Child Psychiatry Hum Dev. 2020;51(5):671–82.
Sheehan J, Hiscock H, Massie J, Jaffe A, Hay M. Caregiver coping, mental health and child problem behaviours in cystic fibrosis: a cross-sectional study. Int J Behav Med. 2014;21(2):211–20.
Martin OY, Thompson SM, Carroll AE, Jacob SA. Emergency department provider survey regarding acute sickle cell pain management. J Pediatr Hematol Oncol. 2020;42(6):375–80.
Haywood C Jr, Tanabe P, Naik R, Beach MC, Lanzkron S. The impact of race and disease on sickle cell patient wait times in the emergency department. Am J Emerg Med. 2013;31(4):651–6.
Farooq F, Mogayzel PJ, Lanzkron S, Haywood C, Strouse JJ. Comparison of US federal and foundation funding of research for sickle cell disease and cystic fibrosis and factors associated with research productivity. JAMA Netw Open. 2020;3(3):e201737.
Raphael JL, Rattler TL, Kowalkowski MA, Brousseau DC, Mueller BU, Giordano TP. Association of care in a medical home and health care utilization among children with sickle cell disease. J Natl Med Assoc. 2013;105(2):157–65.
Siminerio L, Ruppert K, Huber K, Toledo FG. Telemedicine for reach, education, access, and treatment (TREAT): linking telemedicine with diabetes self-management education to improve care in rural communities. Diabetes Educ. 2014;40(6):797–805.
Hennink M, Kaiser BN. Sample sizes for saturation in qualitative research: a systematic review of empirical tests. Soc Sci Med. 2022;292:114523. https://doi.org/10.1016/j.socscimed.2021.114523.