Skip to main content
Log in

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

  • Original Research
  • Published:
Journal of Genetic Counseling

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Bailey, K. G. (1988). Psychological kinship: implications for the helping profession. Psychotherapy, 25(1), 132–141.

    Article  Google Scholar 

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • Biesecker, B. B. (2001). Goals of genetic counseling. Clinical Genetics, 60, 323–330.

    Article  CAS  PubMed  Google Scholar 

  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research. Psychology, 3, 77–101.

    Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • DeSantis, L., & Noel Ugarriza, D. (2000). The concept of theme as used in qualitative nursing research. Western Journal of Nursing Research, 22, 351–372.

    Article  CAS  PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • Evans, M., Bergum, V., Bamforth, S., & Macphail, S. (2004). Relational Ethics and Genetic Counseling. Nursing Ethics, 11(5), 459–471. doi:10.1191/0969733004ne724oa.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Gadow, S. (1999). Relational narrative: the postmodern turn in nursing ethics. Research and Theory for Nursing Practice, 13, 57–70.

    CAS  Google Scholar 

  • Gaff, C. L., & Bylund, C. (2010). Family communication about genetics: theory and practice. Oxford: Oxford University Press.

    Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Kessler, S. (1997). Psychological aspects of genetic counseling. IX. Teaching and counseling. Journal of Genetic Counseling, 6, 287–295.

    Article  CAS  PubMed  Google Scholar 

  • 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 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Pierson, W. (1999). Considering the nature of intersubjectivity within professional nursing. Journal of Advanced Nursing, 30(2), 294–302.

    Article  CAS  PubMed  Google Scholar 

  • 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.

  • 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.

    Article  PubMed  Google Scholar 

  • Schapira, L. (2013). The essential elements of a therapeutic presence. Cancer, 119, 1609–1610. doi:10.1002/cncr.27946.

    Article  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Skirton, H. (2001). The Patient’s perspective of genetic counseling — a grounded theory study. Journal of Genetic Counseling, 10(4), 311–329.

    Article  CAS  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

  • 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 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Veach, P. M., LeRoy, B. S., & Bartels, D. M. (2003). Facilitating the genetic counseling process: a practice manual. New York: Springer.

    Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to S. R. Williams.

Ethics declarations

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.

Electronic supplementary material

ESM 1

(PDF 183 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Williams, S.R., Berrier, K.L., Redlinger-Grosse, K. et al. Reciprocal Relationships: the Genetic Counselor-Patient Relationship Following a Life-Limiting Prenatal Diagnosis. J Genet Counsel 26, 337–354 (2017). https://doi.org/10.1007/s10897-016-0016-0

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10897-016-0016-0

Keywords

Navigation