The lived experiences of adolescents with sickle cell disease in Kingston, Jamaica

References

• Adegbola M. A., Barnes D. M., Opollo J. G., Herr K., Gray J., McCarthy A. M. Voices of adults living with sickle cell disease pain. Journal of National Black Nurses’ Association: JNBNA. 2012; 23(2): 16. [PubMed CentralFull Text].
   Google Scholar
• Anderson M., Asnani M. ‘You Just Have to Live with It’ coping with sickle cell disease in Jamaica. Qualitative Health Research. 2013; 23(5): 655–664. [PubMed Abstract].
   Google Scholar
• Anderson M., Asnani M. The white blood cell always eats the red’: How Jamaicans with sickle cell disease understand their illness. Ethnicity & Health [Epub ahead of print]. 2015; 1–15. [PubMed Abstract] [PubMed CentralFull Text].
   Google Scholar
• Anie K. A. Psychological complications in sickle cell disease. British Journal of Haematology. 2005; 129: 723–729. [PubMed Abstract].
   Google Scholar
• Anie K. A., Egunjobi F. E., Akinyanju O. O. Psychosocial impact of sickle cell disorder: Perspectives from a Nigerian setting. Global Health. 2010; 6: 2. [PubMed Abstract] [PubMed CentralFull Text].
   Google Scholar
• Stone J. H., Blouin M. Sickle cell disease. International encyclopedia of rehabilitation. Retrieved June 3, 2015, from http://cirrie.buffalo.edu/encyclopedia/article.php?id=252&language=en.
   Google Scholar
• Asnani M. R., Ali S. B., Reid M. E., Lipps G., Williams-Green P. Quality of life in patients with sickle cell disease in Jamaica: Rural-urban differences. The International Electronic Journal of Rural and Remote Health. 2008; 8: 890.
   PubMed Web of Science ®Google Scholar
• Asnani M. R., Bhatt K., Younger N., McFarlane S., Francis D., Gordon-Strachan G., etal. Risky behaviours of Jamaican adolescents with sickle cell disease. Hematology. 2014; 19(7): 373–379.
   Google Scholar
• Asnani M. R., Fraser R., Lewis N. A., Reid M. Depression and loneliness in Jamaicans with sickle cell disease. BMC Psychiatry. 2010; 10: 40. [PubMed Abstract] [PubMed CentralFull Text].
   Google Scholar
• Barakat L. P., Patterson C. A., Weinberger B. S., Simon K., Gonzalez E. R., Dampier C. A prospective study of the role of coping and family functioning in health outcomes for adolescents with sickle cell disease. Journal of Pediatric Hematology/Oncology: Official Journal of the American Society of Pediatric Hematology/Oncology. 2007; 29(11): 752–760.
   Web of Science ®Google Scholar
• Barakat L. P., Swartz L. A., Simon K., Radcliffe J. Negative thinking as a coping strategy mediator of pain and internalizing symptoms in adolescents with sickle cell disease. Journal of Behavioral Medicine. 2007; 30: 199–208. [PubMed Abstract].
   Google Scholar
• Barlow J. H., Ellard D. R. The psychosocial well-being of children with chronic disease, their parents and siblings: An overview of the research evidence base. Child: Health, Care & Development. 2006; 32(1): 19–31. [PubMed Abstract] [PubMed CentralFull Text].
   Google Scholar
• Bender B. G. Risk taking, depression, adherence and symptom control in adolescents and young adults with asthma. American Journal of Respiratory Critical Care Medicine. 2006; 173(9): 953–957.
   Google Scholar
• Bhatt K., Reid M. E., Lewis N. A., Asnani M. R. Knowledge and health beliefs of Jamaican adolescents with sickle cell disease. Pediatric Blood Cancer. 2011; 57: 1044–1048. [PubMed Abstract].
   Google Scholar
• Chapman D. P., Perry G. S., Strine T. W. The vital link between chronic disease and depressive disorders. Prev Chronic Dis. 2005; 2(1): A14. [PubMed Abstract] [PubMed CentralFull Text].
   Google Scholar
• Centers for Disease Control – National Centre for Chronic Disease Prevention and Health Promotion. 2010. Retrieved June 3, 2015, from http://www.cdc.gov/Features/Sicklecell/.
   Google Scholar
• Cotton S., Grossoehme D., Rosenthal S. L., McGrady M. E., Humency Roberts Y., Hines J., etal. Religious/spiritual coping in adolescents with sickle cell disease: A pilot study. Journal of Pediatric Hematology/Oncology. 2009; 31(5): 313–318. [PubMed Abstract] [PubMed CentralFull Text].
   Google Scholar
• Creswell J. Educational research: Planning, conducting and evaluating quantitative and qualitative research. 2008; 3rd ed, Upper Saddle River, NJ: Pearson Prentice Hall.
   Google Scholar
• Day S., Chismark E. The cognitive and academic impact of sickle cell disease. Journal of School of Nursing. 2006; 22(6): 330–335.
   PubMedGoogle Scholar
• Dyson S. M., Atkin K., Culley L. A., Dyson S. E., Evans H., Rowley D. T. Disclosure and sickle cell disorder: A mixed methods study of young person with sickle cell at school. Social Science & Medicine. 2010; 70(12): 2036–2044.
   Google Scholar
• Emond A. M., Collis R., Darvill D., Higgs D. R., Maude G. H., Serjeant G. R. Acute splenic sequestration in homozygous sickle cell disease: Natural history and management. The Journal of Pediatrics. 1985; 107(2): 201–206.
   Google Scholar
• Erskine R. Adolescent boys with sickle cell disease. Clinical Child Psychology and Psychiatry. 2012; 17(1): 17–31. [PubMed Abstract].
   Google Scholar
• Ezenwosu O. U., Emodi I. J., Ikefuna A. N., Chukwu B. F., Osuorah C. D. Determinants of academic performance in children with sickle cell anaemia. BMC Pediatrics. 2013; 13: 189.
   Google Scholar
• Finlay L. Debating phenomenological research methods. Phenomenology & Practice. 2009; 3: 6–25. [PubMed Abstract] [PubMed CentralFull Text].
   Google Scholar
• Forgeron P. A., King S., Stinson J. N., McGrath P. J., MacDonald A. J., Chambers C. T. Social functioning and peer relationships in children and adolescents with chronic pain: A systematic review. Pain Research and Management. 2010; 15(1): 27–41. [PubMed Abstract] [PubMed CentralFull Text].
   Google Scholar
• Giorgi A. Concerning the application of phenomenology to caring research. Scandanavian Journal of Caring Science. 2000; 14: 11–15.
   PubMed Web of Science ®Google Scholar
• Graneheim U. H., Lundman B. Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today. 2004; 24(2): 105–112.
   Google Scholar
• Grove J., Grove O., Michie C. The real effect of sickle cell disease on children and adolescents. The West London Medical Journal. 2013; 6(1): 11–17.
   Google Scholar
• Hanchard N. A., Hambleton I., Harding R. M., McKenzie C. The frequency of the sickle allele in Jamaica has not declined over the last 22 years. British Journal of Haematology. 2005; 130: 939–942.
   Google Scholar
• Jamaica Reproductive Health Survey. Jamaica Family Planning Board (NFPB): Statistical Institute of Jamaica (STATIN); Division of Reproductive Health-Centers for Disease Control and Prevention (CDC). 2008a. Retrieved June 3, 2015, from http://stacks.cdc.gov/view/cdc/8254.
   Google Scholar
• Jamaica Reproductive Health Survey. 2008b. Retrieved June 3, 2015, from http://www.jnfpb.org/pdf/AdolescentReproductiveHealth/Background_on_Adolescent_Reproductive_Health.pdf.
   Google Scholar
• Jenerette C. M., Brewer C. Health-related stigma in young adults with sickle cell disease. Journal of the National Medical Association. 2010; 102(11): 1050–1055. [PubMed Abstract] [PubMed CentralFull Text].
   Google Scholar
• King L., Fraser F., Forbes M., Grindley M., Ali S., Reid M. Newborn sickle-cell disease screening: The Jamaican experience (1995–2006). Journal of Medical Screening. 2007; 14: 117–121. [PubMed Abstract].
   Google Scholar
• King L., Knight-Madden J., Reid M. Newborn screening for sickle cell disease in Jamaica: A review—Past, present and future. The West Indian Medical Journal. 2014; 63(2): 147–150. [PubMed Abstract].
   Google Scholar
• Knapp C., Quinn G. P., Murphy D., Brown R., Madden V. Adolescents with life-threatening illnesses. Paediatric Palliative Care. 2010; 27(2): 139–144.
   Web of Science ®Google Scholar
• Lee A., Thomas P., Cupidore L., Serjeant B., Serjeant G. Improved survival in homozygous sickle cell disease: Lessons from a cohort study. British Medical Journal. 1995; 311: 1600–1602.
   Google Scholar
• Lowe G. A., Gibson R. C. Depression in adolescents; new developments. West Indian Medical Journal. 2005; 54(6): 387–391.
   Google Scholar
• Marcia J. E. Identity in adolescence. Handbook of adolescent psychology. 1980; 9(11): 159–187.
   Google Scholar
• Miller P. Theories of developmental psychology. 1983; San Francisco, CA: W.H. Freeman.
   Google Scholar
• Modell B., Darlison M. Global epidemiology of haemoglobinopathy disorders and derived service indicators. Bulletin of the World Health Organization. 2008; 86: 480–487.
   Google Scholar
• Morgan K. A. D., Scott J., Parshad-Asnani M., Gibson R. C., O'Garo K. N., Lowe G. A., etal. Association among disease severity, religious coping and depression in a cohort of Jamaicans with sickle-cell disease. Mental Health, Religion & Culture. 2014; 17: 937–945. [PubMed Abstract] [PubMed CentralFull Text].
   Google Scholar
• National Heart, Lung, and Blood Institute. Sickle cell anemia. Diseases and Conditions Index. 2008. Retrieved August 17, 2015, from http://www.nhlbi.nih.gov/health/dci/Diseases/Sca/SCA_WhoIsAtRisk.html.
   Google Scholar
• Newland J. A. Factors influencing independence in adolescents with sickle cell disease. Journal of Child and Adolescent Psychiatric Nursing. 2008; 21(3): 177–185.
   Google Scholar
• Noll R. B., Kiska R., Reiter-Purtill J., Gerhardt C. A., Vannatta K. A controlled, longitudinal study of the social functioning of youth with sickle cell disease. Pediatrics. 2010; 125(6): e1463–31459.
   Web of Science ®Google Scholar
• Patel A. B., Pathan H. G. Quality of life in children with sickle cell hemoglobinopathy. Indian Journal of Pediatrics. 2005; 72(7): 567–571.
   Google Scholar
• Polit D. F., Beck C. T. Essentials of nursing research: Appraising evidence for nursing practice. 2010; 7th ed, Philadelpia, PA: Wolters Kluwer/Lippincott Williams.
   Google Scholar
• Rennie D. L. Qualitative research as methodical hermeneutics. Psychological Methods. 2012; 17(3): 385–398.
   Google Scholar
• Sansom-Daly U. M., Peate M., Wakefield C. E., Bryant R. A., Cohn R. J. A systematic review of psychological interventions for adolescents and young adults living with chronic illness. Health Psychology. 2012; 31(3): 380–393. [PubMed Abstract].
   Google Scholar
• Sawyer S. M., Drew S., Yeo M. S., Britto M. T. Adolescents with a chronic condition: Challenges living, challenges treating. The Lancet. 2007; 369(9571): 1481–1489.
   PubMed Web of Science ®Google Scholar
• Serjeant G.R. A guide to sickle cell disease. Sickle Cell Trust. 2001; Kingston: Lithographic Printers Limited.
   Google Scholar
• Serjeant G. R. The dilemma of defining clinical severity in homozygous sickle cell disease. Current Hematological Report. 2004; 3(5): 307–309.
   Google Scholar
• Serjeant G. R., Serjeant B. E. Sickle cell disease. 2001; 3rd ed, Oxford: Oxford University Press.
   Google Scholar
• Serjeant G. R., Singhal A., Hambleton I. R. Sickle cell disease and age at menarche in Jamaican girls: Observations from a cohort study. Archives of Disease in Childhood. 2001; 85(3): 375–378.
   Google Scholar
• Suris J. C., Michaud P. A., Viner R. The adolescent with a chronic condition: Part 1: Developmental issue. Archives of Disease in Childhood. 2004; 89(10): 938–942.
   Google Scholar
• Sousa D. Validation in qualitative research: General aspects and specificities of the descriptive phenomenological method. Qualitative Research in Psychology. 2014; 11(2): 211–227.
   Web of Science ®Google Scholar
• Schwartz L. A., Radcliffe J., Barakat L. P. Associates of school absenteeism with sickle cell disease. Pediatric blood Cancer. 2009; 52(1): 92–96. [PubMed Abstract] [PubMed CentralFull Text].
   Google Scholar
• Wierenga K. J., Hambleton I. R., Lewis N. A. Survival estimates for patients with homozygous sickle-cell disease in Jamaica: A clinic based population study. Lancet. 2001; 357: 680–683.
   Google Scholar
• World Health Organization. Sickle-cell anaemia-report by the secretariat 1–5. 2006; Geneva: World Health Organization. Fifty-Ninth World Health Assembly A59/9.
   Google Scholar