Grief and loss in the context of genetic counselling 2012

Author: H. Skirton
Submitted: Tuesday 26th of June 2012 02:44:52 PM
Submitted by: egf
Language: English
Content type: Learning resource
Educational levels: expert, qc2, qc3


The tasks of mourning (Worden) 1. Unreality 2. Acceptance of the reality 3. Pain of loss 4. Adjusting to present 5. Reinvestment in future. Grief issues Families affected by a genetic condition often experience a series of multiple losses, leading to continual cycles of grief. There may be intense grief associated with genetic testing, as well as other psychological impact. The impact may be even greater on individuals who receive ’good news’ test results, and this will be discussed. Doka ( 2002) spoke of the concept of disenfranchised grief (Doka, 2002), when the loss is not legitimized or support is absent Tis may be a feature of grief after a genetic test, where there are no associated rituals. It may also occur if the person has had the test secretly. How can genetic counsellors help? • By support clients to manage emotional effects of the condition or testing (McAllister et al, 2007) • By discussing family issues, including relationships and family style • By including psychosocial issues in both letters and written literature (Lewis et al, 2007). References: Boss P et al (1988) Alzheimer disease and ambiguous loss In Chilman et al [Eds] Chronic illness and disability: Families in trouble series. P123-140, Beverly Hills, Sage. 1999 Lewis C, Mehta P, Kent A, Skirton H, Coviello D. (2007) An Assessment of Written Patient Information Relating to Genetic Testing from Across Europe. European Journal of Human Genetics 15:1012-1022 McAllister M et al (2007) The emotional effects of genetic diseases: implications for clinical genetics. American Journal Of Medical Genetics. Part A 143 (22): 2651-61 Sobel S & Cowan CB (2003) Ambiguous loss and disenfranchised grief: the impact of DNA predictive testing on the family as a system. Family Process 42(1):47-57 Williams, JK, Skirton H, Paulsen JS, Tripp-Reimer T et al. (2008) The emotional experiences of family carers in Huntington disease. Journal of Advanced Nursing, 65(4): 789-798.


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Original version - English

abstract Skirton_Grief_and_loss_in_the_context_of_genetic_counselling_5200.pdf

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H. Skirton. Grief and loss in the context of genetic counselling 2012. EUROGENE portal. June 2012. online:



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