Advertisement

Journal of Genetic Counseling

, Volume 26, Issue 2, pp 337–354 | Cite as

Reciprocal Relationships: the Genetic Counselor-Patient Relationship Following a Life-Limiting Prenatal Diagnosis

  • S. R. WilliamsEmail author
  • K. L. Berrier
  • K. Redlinger-Grosse
  • J. G. Edwards
Original Research

Abstract

Utilizing the tenet, “Relationship is integral to the genetic counseling process” from the Reciprocal Engagement Model (REM) of genetic counseling practice, this study sought to explore the relationship between the genetic counselor and patient following a “life-limiting” prenatal diagnosis that resulted in a major loss (termination, stillbirth/miscarriage, or neonatal death). The specific aims of this study were to: 1) Understand and describe aspects of the genetic counselor-patient relationship in the context of the life-limiting prenatal diagnosis, and identify characteristics and actions of the 2) genetic counselor and 3) patient that influence the relationship. Genetic counselor (GC) participants were recruited via a web-based survey distributed by NSGC and the NSGC Prenatal SIG. Eligible GCs maintained a relationship with a patient beyond the prenatal diagnosis and had a willing patient participant. Individual 60-min audio-recorded telephone interviews were conducted with eight GC and 8 respective patients (n = 16) using parallel interview guides (n = 16). Transcriptions underwent thematic content analysis for systematic coding and identification of emergent themes. The GC-patient relationship was characterized by the evolution of communication and promoted by the supportive needs of the patient, the nature of the diagnosis, and characteristics and supportive actions of the participants. This exploratory study highlights the unique service of support offered by genetic counselors in the context of a life-limiting prenatal diagnosis.

Keywords

Reciprocal-engagement model Rem Prenatal diagnosis Life-limiting Lethal Genetic counseling Relationship 

Notes

Compliance with Ethical Standards

Conflict of Interest

Authors Williams, S. R., Author Berrier, K. L., Author Redlinger-Grosse, K. and Author Edwards, J. declare that they have no conflict of interest.

Human Studies

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5).

Informed Consent

Informed consent was obtained from all patients for being included in the study.

Animal Studies

This article does not contain any studies with animals performed by any of the authors.

Supplementary material

10897_2016_16_MOESM1_ESM.pdf (183 kb)
ESM 1 (PDF 183 kb)

References

  1. Ackerman, S. J., & Hilsenroth, M. J. (2003). A review of therapist characteristics and techniques positively impacting the therapeutic alliance. Clinical Psychology Review, 23(1), 1–33. doi: 10.1016/S0272-7358(02)00146-0.CrossRefPubMedGoogle Scholar
  2. Bachelor, A., Meunier, G., Laverdiére, O., & Gamache, D. (2010). Patient attachment to therapist: Relation to patient personality and symptomatology, and their contributions to the therapeutic alliance. Psychotherapy, 47(4), 454–468. doi: 10.1037/a0022079.CrossRefPubMedGoogle Scholar
  3. Bailey, K. G. (1988). Psychological kinship: implications for the helping profession. Psychotherapy, 25(1), 132–141.CrossRefGoogle Scholar
  4. Berkenstadt, M., Shiloh, S., Barkai, G., Katznelson, M., & Goldman, B. (1999). Perceived Personal Out-come (PPC): A new concept in measuring outcome of genetic counseling. American Journal of Medical Genetics, 82, 53–59.CrossRefPubMedGoogle Scholar
  5. Bernhardt, B., Biesecker, B. B., & Mastromarino, C. L. (2000). Goals, benefits, and outcomes of genetic counseling: patient and genetic counselor assessment. American Journal of Medical Genetics, 94(3), 189–197.CrossRefPubMedGoogle Scholar
  6. Biesecker, B. B. (2001). Goals of genetic counseling. Clinical Genetics, 60, 323–330.CrossRefPubMedGoogle Scholar
  7. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research. Psychology, 3, 77–101.Google Scholar
  8. Busseri, M., & Tyler, J. D. (2004). Patient-therapist agreement on target problems, working alliance, and counseling outcome. Psychotherapy Research, 14(1), 77–88. doi: 10.1093/ptr/kph005.CrossRefPubMedGoogle Scholar
  9. Castonguay, L. G., Constantino, M. J., & Grosse Holtforth, M. (2006). The working alliance: where are we and where should we go? Psychotherapy: Theory, Research, Practice, Training, 43(3), 271–279.CrossRefGoogle Scholar
  10. DeSantis, L., & Noel Ugarriza, D. (2000). The concept of theme as used in qualitative nursing research. Western Journal of Nursing Research, 22, 351–372.CrossRefPubMedGoogle Scholar
  11. Eugster, S. L., & Wampold, B. E. (1996). Systematic effects of participant role on evaluation of the psychotherapy session. Journal of Consulting and Clinical Psychology, 64(5), 1020–1028.CrossRefPubMedGoogle Scholar
  12. Evans, M., Bergum, V., Bamforth, S., & Macphail, S. (2004). Relational Ethics and Genetic Counseling. Nursing Ethics, 11(5), 459–471. doi: 10.1191/0969733004ne724oa.CrossRefPubMedGoogle Scholar
  13. Fonseca, A., Nazaré, B., & Canavarro, M. C. (2012). Parental psychological distress and quality of life after a prenatal or postnatal diagnosis of congenital anomaly: a controlled comparison study with parents of healthy infants. Disability and Health Journal, 5(2), 67–74. doi: 10.1016/j.dhjo.2011.11.001.CrossRefPubMedGoogle Scholar
  14. Fox, M., Weil, J., & Resta, R. (2007). Why we do what we do: Commentary on a reciprocal-engagement model of genetic counseling practice. Journal of Genetic Counseling, 16(6), 729–730. doi: 10.1007/s10897-007-9118-z.CrossRefPubMedGoogle Scholar
  15. Gadow, S. (1999). Relational narrative: the postmodern turn in nursing ethics. Research and Theory for Nursing Practice, 13, 57–70.Google Scholar
  16. Gaff, C. L., & Bylund, C. (2010). Family communication about genetics: theory and practice. Oxford: Oxford University Press.Google Scholar
  17. Hartmann, J. E., Veach, P. M., MacFarlane, I. M., & LeRoy, B. S. (2015). Genetic Counselor Perceptions of Genetic Counseling Session Goals: A Validation Study of the Reciprocal-Engagement Model. Journal of Genetic Counseling, 24(2), 225–237. doi: 10.1007/s10897-013-9647-6.CrossRefPubMedGoogle Scholar
  18. Jackson, B., Dimmock, J., Taylor, I. M., & Hagger, M. S. (2012). The tripartite efficacy framework in client-therapist rehabilitation interactions: implications for relationship quality and client engagement. Rehabilitation Psychology, 57(4), 308–319. doi: 10.1037/a0030062.CrossRefPubMedGoogle Scholar
  19. Kessler, S. (1997). Psychological aspects of genetic counseling. IX. Teaching and counseling. Journal of Genetic Counseling, 6, 287–295.CrossRefPubMedGoogle Scholar
  20. Kivlighan, D. M., Gelso, C. J., Ain, S., Hummel, A. M., & Markin, R. D. (2014). The therapist, the client, and the real relationship: An actor-partner interdependence analysis of treatment outcome. Journal of Counseling Psychology. doi: 10.1037/cou0000012.Google Scholar
  21. Lalor, J. G., Begley, C. M., & Galavan, E. (2008). A grounded theory study of information preference and coping styles following antenatal diagnosis of foetal abnormality. Journal of Advanced Nursing, 64(2), 185–194. doi: 10.1111/j.1365-2648.2008.04778.x.CrossRefPubMedGoogle Scholar
  22. Leach, M. J. (2005). Rapport: a key to treatment success. Complementary Therapies in Clinical Practice, 11(4), 262–265. doi: 10.1016/j.ctcp.2005.05.005.CrossRefPubMedGoogle Scholar
  23. Moore, C. D. (2012). The caregiver-provider relationship assessment: measuring family caregivers’ perceptions of relationship quality with health care providers. Evaluation & the Health Professions, 35(1), 104–110. doi: 10.1177/0163278711417859.CrossRefGoogle Scholar
  24. Pierson, W. (1999). Considering the nature of intersubjectivity within professional nursing. Journal of Advanced Nursing, 30(2), 294–302.CrossRefPubMedGoogle Scholar
  25. Putzer, G. J. & Park, Y. (2012). Are Physicians Likely to Adopt Emerging Mobile Technologies? Attitudes and Innovation Factors Affecting Smartphone Use in the Southeastern United States. Perspectives in Health Information Management / AHIMA, American Health Information Management Association. 9 (Spring):1b.Google Scholar
  26. Redlinger-Grosse, K., Veach, P. M., Cohen, S., Leroy, B. S., Macfarlane, I. M., & Zierhut, H. (2015). Defining Our Clinical Practice: The Identification of Genetic Counseling Outcomes Utilizing the Reciprocal Engagement Model. Journal of Genetic Counseling, 25(2), 239–257. doi: 10.1007/s10897-015-9864-2.CrossRefPubMedGoogle Scholar
  27. Schapira, L. (2013). The essential elements of a therapeutic presence. Cancer, 119, 1609–1610. doi: 10.1002/cncr.27946.CrossRefPubMedGoogle Scholar
  28. Sexton, T. L., & Whiston, S. C. (1994). The status of the counseling relationship: An empirical review, theoretical implications, and research directions. The Counseling Psychologist, 22, 6–78.CrossRefGoogle Scholar
  29. Shick, T. G., Collins, B. S., & Felleman, H. E. (2007). A meta-analytic examination of patient–therapist perspectives of the working alliance. Psychotherapy Research, 17(6), 629–642. doi: 10.1080/10503300701320611.CrossRefGoogle Scholar
  30. Skirton, H. (2001). The Patient’s perspective of genetic counseling — a grounded theory study. Journal of Genetic Counseling, 10(4), 311–329.CrossRefPubMedGoogle Scholar
  31. Skovholt, T. M. (2005). The cycle of caring: a model of expertise in the helping professions. Journal of Mental Health Counseling, 27(1), 82–93.CrossRefGoogle Scholar
  32. Skovholt, T. M., Yoo, S., & Hall, B. (1999). Hazards of Practice in Helping Professions Correspondence regarding this article should be sent to Hazards of Practice in Helping Professions. 47–60. http://210.101.116.28/W_files/kiss61/1v400035_pv.pdf.
  33. Sparker, A. (2005). Narrative analysis: exploring the whats and hows of personal stories. In I. Holloway (Ed.), Qualitative research in health care (1st ed., pp. 191–208). Berkshire: Open University Press.Google Scholar
  34. Taber, B. J., Leibert, T. W., & Agaskar, V. R. (2011). Relationships among patient-therapist personality congruence, working alliance, and therapeutic outcome. Psychotherapy (Chicago, Ill.), 48(4), 376–380. doi: 10.1037/a0022066.CrossRefGoogle Scholar
  35. Veach, P. M., Truesdell, S. E., LeRoy, B. S., & Bartels, D. M. (1999). Patient perceptions of the impact of genetic counseling: an exploratory study. Journal of Genetic Counseling, 8(4), 191–216.CrossRefPubMedGoogle Scholar
  36. Veach, P. M., LeRoy, B. S., & Bartels, D. M. (2003). Facilitating the genetic counseling process: a practice manual. New York: Springer.Google Scholar
  37. Veach, P. M., Bartels, D. M., & Leroy, B. S. (2007). Coming full circle: a reciprocal-engagement model of genetic counseling practice. Journal of Genetic Counseling, 16(6), 713–728. doi: 10.1007/s10897-007-9113-4.CrossRefPubMedGoogle Scholar
  38. Victoor, A., Delnoij, D. M. J., Friele, R. D., & Rademakers, J. J. D. J. M. (2012). Determinants of patient choice of healthcare providers: a scoping review. BMC Health Services Research, 12(1), 272. doi: 10.1186/1472-6963-12-272.CrossRefPubMedPubMedCentralGoogle Scholar
  39. Wheeler, C. K., Said, H., Prucz, R., Rodrich, R. J., & Mathes, D. W. (2011). Social media in plastic surgery practices: emerging trends in North America. Aesthetic Surgery Journal, 31(4), 435–441. doi: 10.1177/1090820X114074.CrossRefPubMedGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2016

Authors and Affiliations

  • S. R. Williams
    • 1
    • 2
    Email author
  • K. L. Berrier
    • 3
  • K. Redlinger-Grosse
    • 4
  • J. G. Edwards
    • 5
  1. 1.Genetic Counseling Program, School of MedicineUniversity of South CarolinaColumbiaUSA
  2. 2.Savannah Perinatology AssociatesSavannahUSA
  3. 3.Division of Medical GeneticsDuke University Medical CenterDurhamUSA
  4. 4.Psychology Intern, Student Counseling ServicesUniversity of MinnesotaMinneapolisUSA
  5. 5.Genetic Counseling ProgramUniversity of South CarolinaColumbiaUSA

Personalised recommendations