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Genetic counselling in sickle cell disease: views of single young adults in Ghana

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Abstract

Sickle cell disease is a chronic inherited blood disorder affecting many people globally as well as in Sub-Saharan Africa. In Ghana, the disease has a prevalence of 2% with carrier rate of 20–25% among the populace. Genetic counselling is a cost-effective strategy in reducing the burden of this disorder. However, little is known about the relevance of this intervention particularly among young adults in their reproductive age. The purpose of this is to explore the views of single young adults about genetic counselling in the Accra metropolis, Ghana. An exploratory descriptive qualitative designed was used. Thirty-two (32) young adults between the ages of 18 and 28 years were purposively selected from a private university in Ghana. Four focus group discussions and twelve in-depth interviews were conducted. Data was analysed using content analysis technique. The results of the study revealed that young adults had knowledge about SCD and due to that showed positive perceptions towards genetic counselling in SCD. However, they were unaware of genetic counselling facilities in the country. They expressed willingness to accept genetic counselling related to SCD whether for a fee or for free. It was concluded that establishment of a number of genetic counselling centres is very crucial in the metropolis.

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Abbreviations

SCD:

Sickle cell disease

Hb:

Haemoglobin

FGD:

Focus group discussion

NHIS:

National Health Insurance Scheme

References

  • Abel RA, Cho E, Chadwick-Mansker KR, D’Souza N, Housten AJ, King AA (2015) Transition needs of adolescents with sickle cell disease. American Journal of Occupational Therapy 69(2):6902350030p1-6902350030p5

  • Adewoyin AS (2015) Management of sickle cell disease: a review for physician education in Nigeria (sub-saharan Africa). Anemia:791498

  • Adewuji JO (2000) Knowledge of and attitude to sickle cell disease and sickle carrier screening among new graduates of Nigeria tertiary education institutions. Niger Postgrad Med J 7(3):120–123

    Google Scholar 

  • Ahmad, Atkin (2000) Screening and counseling for sickle cell disorder and thalassaemia: the experience of parents and health professionals. Soc Sci Med J 47(11):1639–1651

    Google Scholar 

  • American Society of Hematology (2014) Economic impact of sickle cell hospitalisation. Blood 124:5971 Retrieved from: http://www.bloodjournal.org/content/124/21/5971?sso-checked=true, Accessed on May 14, 2016]

    Article  Google Scholar 

  • Asare EV, Wilson I, Benneh-Akwasi Kuma AA, Dei-Adomakoh Y, Sey F, Olayemi E (2018) Burden of sickle cell disease in Ghana: the Korle-Bu Experience. Advances in hematology, 2018

  • Baars MJH, Scherpbier AJJA, Schuwirth LW, Henneman L, Beemer FA, Cobben JM, Hennekam RCM, Verweij MMJJ, Cornel MC, Kate LPT (2005) Deficient knowledge of genetic relevant for daily practice among medical students nearing graduation. Genet Med 7(5):295–301

    Article  Google Scholar 

  • Bache I, Brondum-Nielsen N, Karen MD, Tommerup K, Niels M (2007) Genetic counseling in adult carriers of a balanced chromosomal rearrangement ascertained in childhood: experience from a nationwide re-examination of translocation carriers. Genet Med 9(3):185–187

    Article  Google Scholar 

  • Barnoy S, Appel D, Peretz C, Meiraz H, Enhrenfield M (2006) Genetic testing, genetic information, and the role of maternal-child health nurses in Israel. J Nurs Scholarsh 38(3):219–224

    Article  Google Scholar 

  • Bender MA (2017) Sickle cell disease. GeneReviews® [Internet]

  • Benenson I, Porter S (2018) Sickle cell disease: bone, joint, muscle, and motor complications. Orthop Nurs 37(4):221–227

    Article  Google Scholar 

  • Booth C, Inusa B, Obaro SK (2010) Infection in sickle cell disease: a review. Int J Infect Dis 14:e2–e12

    Article  Google Scholar 

  • Boyd JH, Watkins AR, Price CL, Fleming F, DeBaun MR (2005) Inadequa community knowledge about sickle cell disease among African-American women. J Nat Med Assoc 97(1):62–67

    Google Scholar 

  • Cavazzana M, Mavilio F (2018) Gene therapy for hemoglobinopathies. Hum Gene Ther 29(10):1106–1113. https://doi.org/10.1089/hum.2018.122

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Center for Disease Control and Prevention (2019) U.S. Department of Health & Human Services https://www.cdc.gov/ncbddd/sicklecell/treatments.html

  • Choi J, Kim H (2014) Effectiveness of the interventions utilized in genetic counseling. Adv Nurs 2014:725968, 19 pages. https://doi.org/10.1155/2014/725968

    Article  Google Scholar 

  • Creswell JW (2014) Qualitative inquiry and research design: choosing among five approaches, 3rd edn. SAGE, Thousand Oaks

    Google Scholar 

  • Dennis-Antwi JA, Dyson SM, Ohene-Frempong K (2008) Healthcare provision for sickle cell disease in Ghana: challenges for the African context. Diver Health Soc Care 5(4):241–254

    Google Scholar 

  • Dormandy E, James J, Inusa B, Rees D (2018) How many people have sickle cell disease in the UK? J Public Health 40(3):e291–e295. https://doi.org/10.1093/pubmed/fdx172

    Article  Google Scholar 

  • Ellington L, Kelly KM, Reblin M, Latimer S, Roter D (2011) Communication in genetic counseling: cognitive and emotional processing. Health Communication 26(7):667–675

  • Ghana Statistical Service (2013) 2010 population and housing census regional analytical. report-Greater Accra Region. [Retrieved from: http://www.statsghana.gov.gh/docfiles/2010phc/2010_PHC_Regional_Analytical_Reports_Greater_Accra_Region.pdf. Available on August 12, 2015].

  • Grosse SD, Odame I, Atrash HK, Amendah DD, Piel FB, Williams TN (2011) Sickle cell disease in Africa: a neglected cause of early childhood mortality. Am J Prev Med 41(6 Suppl 4):S398–S405. https://doi.org/10.1016/j.amepre.2011.09.013

    Article  PubMed  PubMed Central  Google Scholar 

  • Kagu MB, Abjah UA, Ahmed SG (2004) Awareness and acceptability of prenatal diagnosis of sickle cell anaemia among health professionals and students in North Eastern Nigeria. Niger Med J 13(1):48–51

    CAS  Google Scholar 

  • Kyerewaa EA, Edwin F, Etwire V (2011) Controlling sickle cell disease in Ghana--ethics and options. Pan Afr Med J 10:14

    Google Scholar 

  • Marcheco B, Bertoli AM, Rojas I, Heredero L (2003) Attitude and knowledge about presymptomatiic genetic testing among individual s at higher risk for familial, early-onset Alzheimer’s disease. Gen Update Biotechnol 7(1):45

    CAS  Google Scholar 

  • Moscarillo TJ, Holt H, Perman M, Goldberg S, Cortellini L, Stoler JM, DeJong W, Miles BJ, Albert MS, Go RC, Blacker D (2007) Knowledge of and attitude about Alzheimer disease genetics: report of a pilot survey and two focus groups. Comm Genet 10(2):97–102

    CAS  Google Scholar 

  • Mulumba LL, Wilson L (2015) Sickle cell disease among children in Africa: an integrative literature review and global recommendations. Int J Afr Nurs Sci:56–64

  • Obed SA, Asah-Opoku K, Aboagye S, Torto M, Oppong SA, Nuamah MA (2017) Awareness of sickle cell trait status: a crosssectional survey of antenatal women in Ghana. The American journal of tropical medicine and hygiene 96(3):735–740

  • Ohene-Frempong K, Nkrumah F, Osei AY, Opoku C, Adjei DA, Oduro A (2006) Advisory committee meeting reports. Health Education Unit, Kumasi

    Google Scholar 

  • Orish VN, Onyeabor OS, Sanyaolu AO, Iriemenam NC (2014) Evaluating the knowledge of sickle cell disease and hemoglobin electrophoretic pattern among people living in Sekondi-Takoradi Metropolis, Ghana. J Med Trop 16:56–60

    Article  Google Scholar 

  • Paz-y-Mino et al (2006) Genetics and congenital malformation: interpretations, attitudes and practices in suburban communities and the shamans of Ecuador. Comm Genet 9(4):266–273

    Google Scholar 

  • Polit DF, Beck CT (2014) Nursing research: principles and methods, 8th edn. Lippincot, William & Wilkins

    Google Scholar 

  • Rolf B, Brown D, Escobar M, Hashmi MD, Khleif AA, Noblin S, Raia M (2013) An Assessment of Knowledge and Attitudes of Genetic Counseling Services in US HTCS

  • Saraf SL, Molokie RE, Nouraie M, Sable CA, Luchtman-Jones L, Ensing GJ et al (2014) Differences in the clinical and genotypic presentation of sickle cell disease around the world. Paediatr Respir Rev 15(1):4–12. https://doi.org/10.1016/j.prrv.2013.11.003

    Article  PubMed  Google Scholar 

  • Saukko PM, Ellard S, Richards SH, Shepherd MH, Campbell JL (2007) Patients understanding of genetic susceptibility testing in mainstream medicine: qualitative study on thrombophilia. BMC Health Serv Res 7:82

    Article  Google Scholar 

  • gaye Tomatir A, çetin Sorkun H, Demirhan H, Akdağ B (2007) Genetics and genetic counseling: practices and opinions of primary care physicians in Turkey. Genetics in Medicine, 9(2):130–135

  • Treadwell MJ, McClough L, Vichinsky E (2006) Using qualitative and quantitative strategies to evaluate knowledge and perceptions about sickle cell disease and sickle trait. J Nat Med Assoc 98(5):704–710

    Google Scholar 

  • WHO (2016) Sickle-cell disease and other haemoglobin disorders. Retrieved from: http://www.who.int/mediacentre/factsheets/fs308/en/, Accessed on May 12, 2016].

  • WHO (2017). Sickle cell disease. [retrieved from: http://www.afro.who.int/health-topics/sickle-cell-disease. Accessed on April 20, 2018]

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Acknowledgements

The authors acknowledge the contribution of the study participants and the university authorities.

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Authors and Affiliations

  1. Department of Nursing, Valley View University, Box AF 595, Adentan, Accra, Ghana

    Stella Appiah

  2. Department of Adult Health, School of Nursing, College of Health Sciences, University of Ghana, Accra, Ghana

    Kwadwo Ameyaw Korsah

  3. Department of Community Health Nursing, School of Nursing, College of Health Sciences, University of Ghana, Accra, Ghana

    Charles AmpongAdjei

  4. Ghana Health Service, Ga-West Municipal Hospital, Amasaman, Accra, Ghana

    Osei Evans Appiah

Authors
  1. Stella Appiah
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  2. Kwadwo Ameyaw Korsah
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  3. Charles AmpongAdjei
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  4. Osei Evans Appiah
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Contributions

SA conceptualized the study. SA and KAK designed the study and the interview guide. Data were collected by SA. Data analysis was done by SA and KAK. Manuscript was written and critically reviewed by SA and CAA and EOA. All authors read and approved the final manuscript.

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Correspondence to Stella Appiah.

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The authors declare that they have no conflict of interest.

Ethical approval

Ethical clearance was obtained from Institutional Review Board of Noguchi Memorial Institute for Medical Research. Permission was sought from the management of the school, and informed consent (written) was obtained from the participants.

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Appiah, S., Korsah, K.A., AmpongAdjei, C. et al. Genetic counselling in sickle cell disease: views of single young adults in Ghana. J Community Genet 11, 485–493 (2020). https://doi.org/10.1007/s12687-020-00474-4

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  • DOI: https://doi.org/10.1007/s12687-020-00474-4

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