Theory Development of Genetic Counseling among Patient with Genetic Diseases

Authors

  • Henri Setiawan STIKes Muhammadiyah Ciamis
  • Suhanda Suhanda
  • Elis Roslianti
  • Andan Firmansyah

DOI:

https://doi.org/10.35654/ijnhs.v3i6.350

Keywords:

Theory Development, Genetic Counseling, Selfcare

Abstract

Genetic Counseling is a communication process undertaken to address the issue of genetic diseases affected in the family. The basic concept of Selfcare is active awareness, while genetic counseling is passive awareness. The nursing theory is based upon the philosophy that all "patients wish to care for themselves". The objective of this study to sustain the theory development of genetic counseling related to Orem’s Selfcare theory following on from three relationship construction theories which include self care theory, self care deficit theory and nursing system theory. Genetic counseling is relevan with Orem’s selfcare theory as a gold standard to improve self care awareness, increase quality of life and reduce stress level among patients and families with genetic diseases.

Downloads

Download data is not yet available.

References

(1) Abacan MA, Alsubaie L, Barlow-Stewart K, Caanen B, Cordier C, Courtney E, et al. The Global State of the Genetic Counseling Profession. Eur J Hum Genet. 2019;27(2):183–97.

(2) National Society of Genetic Counselor. About Genetic Counselors [Internet]. 2019. Available from: https://www.nsgc.org/page/whoaregcs

(3) Rujito L, Ghozali PA. Menggagas Pengembangan Layanan Konseling Genetik di Unit Pelayanan Kesehatan: Sebuah Kajian Awal. Maj Kedokt Indon. 2010;(September 2010).

(4) Lynch HT, Snyder C, Stacey M, Olson B, Peterson S, Buxbaum S, et al. Communication and Technology in Genetic Counseling for Familial Cancer. Clin Genet Genet. 2014;85(3):213–22.

(5) Resta R et al. A New De?nition of Genetic Counseling: National Society of Genetic Counselors’ Task Force Report. J Genet Couns. 2006;15(2):77–83.

(6) Harding B, Webber C, Rühland L, Dalgarno N, Armour C, Birtwhistle R, et al. Bridging the gap in genetics: A progressive model for primary to specialist care. BMC Med Educ. 2019;19(1):1–10.

(7) Lewis KL, Umstead KL, Johnston JJ, Miller IM, Thompson LJ, Fishler KP, et al. Outcomes of Counseling after Education about Carrier Results: A Randomized Controlled Trial. Am J Hum Genet [Internet]. 2018;102(4):540–6. Available from: https://doi.org/10.1016/j.ajhg.2018.02.009

(8) Fenton GL, Smit AK, Freeman L, Badcock C, Dunlop K, Butow PN, et al. Development and Evaluation of a Telephone Communication Protocol for the Delivery of Personalized Melanoma Genomic Risk to the General Population. J Genet Couns. 2018;27(2):370–80.

(9) Sie AS, Spruijt L, Zelst-Stams WAG van, Mensenkamp AR, Ligtenberg MJL, Brunner HG, et al. High Satisfaction and Low Distress in Breast Cancer Patients One Year after BRCA-Mutation Testing without Prior Face-to-Face Genetic Counseling. J Genet Couns. 2016;25(1):504–14.

(10) McEwen M, M. Wills E. Theoretical Basis for Nursing [Internet]. 5th ed. Philadelphia: Wolters Kluwer Health; Available from https://lccn.loc.gov/2017049174

(11) Williams ID, Richardson TA, Moore DD, Gambrel LE, Keeling ML. Perspectives on self-care. J Creat Ment Heal. 2010;5(3):320–38.

(12) Setiawan H, Ediati A, Winarni TI. Genetic Counseling to Reduce the Level of Depression in Parents of Children with Thalassemia Major. 2nd Int Conf Sport Sci Heal Physical Educ. 2017;(Icsshpe):102–6.

(13) Forsman I. Evolution of the Nursing Role in Genetics. Vol. 23, Journal of Obstetric, Gynecologic, & Neonatal Nursing. 1994. p. 481–7.

(14) Bender M. Re-conceptualizing, the nursing meta-paradigm: Articulating the philosophical ontology of the nursing discipline that orients inquiry and practice. Nurs Inq. 2018;25(3).

(15) Salema D, Townsend A, Austin J. Patient decision-making and the role of the prenatal genetic counselor: An exploratory study. J Genet Couns. 2019;28(1):155–63.

(16) Asim A, Kumar A, Muthuswamy S, Jain S, Agarwal S. “down syndrome: An insight of the disease.” J Biomed Sci [Internet]. 2015;22(1):1–9. Available from: http://dx.doi.org/10.1186/s12929-015-0138-y

(17) Ul-Hasanah FN, Borualogo IS, Wahyudi H. Efektivitas Cognitive Behavior Art Therapy Untuk Meningkatkan Self-Esteem Remaja Obesitas Yang Menjadi Korban Bullying. J Psychol Sci Prof. 2017;1(3).

(18) Rujito L, Soedirman UJ. Menggagas Pengembangan Layanan Konseling Genetik di Unit Pelayanan Kesehatan: Sebuah Kajian Awal. Maj Kedokt Indon. 2010;(May).

(19) Clyman JC, Nazir F, Tarolli S, Black E, Lombardi RQ, Higgins JJ. The impact of a genetics education program on physicians’ knowledge and genetic counseling referral patterns. Med Teach. 2007;29(6):142–50.

(20) Leontini R. Genetic counseling as care of the self. HealthHealth. 2010;14(4):383–97.

(21) Muhlisin A, Irdawati. Teori self care dari Orem dan pendekatan dalam praktek keperawatn. Ber Ilmu Keperawatan [Internet]. 2010;2(2):97–100. Available from: https://publikasiilmiah.ums.ac.id/bitstream/handle/11617/2044/BIK_Vol_2_No_2_9_Abi_Muhlisin.pdf?sequence=1

Downloads

Published

2020-12-22

Most read articles by the same author(s)