Promoting Meaning-Making to Help our Patients Grieve: An Exemplar for Genetic Counselors and Other Health Care Professio
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Promoting Meaning-Making to Help our Patients Grieve: An Exemplar for Genetic Counselors and Other Health Care Professionals Heather A. Douglas
Received: 29 August 2013 / Accepted: 14 May 2014 / Published online: 24 June 2014 # National Society of Genetic Counselors, Inc. 2014
Abstract Genetic counselors and other health professionals frequently meet with patients who are grieving a loss. It is thus helpful for medical professionals to be familiar with approaches to bereavement counseling. Grief theory has evolved over the last few decades, from primarily stage theories of grief such as Kübler-Ross’s “five stages of grief” to frameworks that promote more complex and long-term ways to cope with a loss. Herein I present one recent grief theory – meaning-making - and describe how it can be applied to help parents of children with disabilities grieve the loss of the child that they expected. In particular, I describe a scenario that many genetic counselors face - meeting with the parents of a child with Down syndrome. I outline the research done on the reactions, grief and coping experienced by parents in this circumstance, and I present suggestions for encouraging healthy coping and adjustment for parents, based on the meaning-making perspective. The meaning-making theory can also be applied to many of the other losses faced by genetic counseling patients. Keywords Grief . Disability . Meaning-making . Constructivism . Down syndrome . Coping . Counseling . Genetic . Bereavement
Genetic counselors frequently meet with patients who are bereaved. Being diagnosed with cancer, having a relative or child die of a genetic condition, giving birth to a child with a disability, and experiencing infertility, a miscarriage or a H. A. Douglas (*) Genetics Clinic, Rouge Valley Health System, 2867 Ellesmere Road, Toronto, ON M1E 4B9, Canada e-mail: [email protected] H. A. Douglas George Brown College, Toronto, ON, Canada
stillbirth are all examples of common genetic counseling contexts in which our patients are experiencing grief. Considering the prevalence of grief, as genetic counselors, most of us were introduced to grief theory during our training. Many of the complexities of counseling grieving genetics patients are outlined in a book chapter by Gettig (2010). The grief model probably best known to us is Elisabeth KüblerRoss’s “five stages of grief,” which states that when coping with an imminent death, or when grieving a loss, individuals will experience denial, anger, bargaining, depression and acceptance stages (Kübler-Ross 1969). Published in 1969, Kübler-Ross’s theory has been applied erroneously to many other grief situations that were dissimilar to the imminent deaths of the original cohort (Walter and McCoyd 2009). Thus the theory is incomplete and not representative of a number of grief situations (Larson 1998; Maciejewski et al. 2007). In particular, the “acceptance” stage is now understood to be much more complicated and longlasting than originally proposed by Kübler-Ross. Grief theorists
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