caa a22 4500 605545049 CHVBK 20210128100934.0 cr unu---uuuuu 210128e20150401xx s 000 0 eng 10.1007/s10897-014-9812-6 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9812-6 Helm Benjamin Department of Medical Genetics and Metabolism, Children's Hospital of the King's Daughters/Eastern Virginia Medical School, 601 Children's Lane, 2nd Floor Pediatrics, 23507, Norfolk, VA, USA aut Exploring the Genetic Counselor's Role in Facilitating Meaning-Making: Rare Disease Diagnoses [Elektronische Daten] [Benjamin Helm] The main goal of the constructivist meaning-making framework is to encourage grief adaptation through the search for meaning in loss. Strategies to help patients construct meaning from their experiences may lead to positive adaptation. This strategy has been used in contemporary grief counseling, but it may also be beneficial in the genetic counseling scenario. The diagnosis of a rare genetic disorder often has considerable psychosocial impact as patients and families describe feelings of isolation and hopelessness. Negative experiences with healthcare providers often reinforce these feelings. Genetic counselors continue to provide education and psychosocial support to patients and families with rare genetic disorders, and meaning-making strategies may provide a framework for which to help patients and families adapt to these challenging diagnoses. In this paper I explore the background of meaning-making counseling strategy and describe an experience in which it was used for counseling a family with a child with Mowat-Wilson syndrome. I show how a meaning-making framework can help families explore and construct meaning from their experiences and encourage positive adaptation. I also address the possible limitations of this strategy and the need to share additional experiences with this counseling framework. Meaning-making can be another tool for genetic counselors to help guide families in their grief and adaptation to rare disease diagnoses. I also describe qualities and aspects of counseling through the lens of meaning-making and stress the importance of addressing psychosocial dimensions of rare disease diagnoses. National Society of Genetic Counselors, Inc., 2015 Genetic counseling nationallicence Meaning nationallicence Meaning-making nationallicence Psychosocial nationallicence Support nationallicence Rare diseases nationallicence Mowat-Wilson syndrome nationallicence Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/2(2015-04-01), 205-212 1059-7700 24:2<205 2015 24 10897 https://doi.org/10.1007/s10897-014-9812-6 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9812-6 text/html Onlinezugriff via DOI NATIONALLICENCE 100 1- Helm Benjamin Department of Medical Genetics and Metabolism, Children's Hospital of the King's Daughters/Eastern Virginia Medical School, 601 Children's Lane, 2nd Floor Pediatrics, 23507, Norfolk, VA, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/2(2015-04-01), 205-212 1059-7700 24:2<205 2015 24 10897