The Process of Family Reconstruction after DNA Testing for Huntington Disease

Abstract

The needs of families to reconstruct their relationships in response to the DNA testing for Huntington disease of one or more of their asymptomatic members are presented. Data were collected from family interviews with 18 families, and from their responses on a post interview questionnaire. Findings are that families need to (a) address "unfinished business" associated with the decision for testing; (b) bring family members, peripheral in the decision for testing, into the loop; (c) reorganize patterns of communication and roles altered by the testing and heal ruptures in family membership; and (d) revise family stories about illness to provide a meaning for HD and explain the test results in a way that leaves them with a sense of mastery. Findings suggest that families should be more involved in the initial decision for testing of a member and that protocols should be established to provide help for their ongoing adjustment.

Improving follow up after predictive testing in Huntington’s disease: evaluating a genetic counselling narrative group session

“…The narrative session was typically their first instance of communicating with others in a similar position. Participant accounts resonate with previous work describing changes in family communication and relationships (Tibben et al 1993;Tibben et al 1992) and reconstruction of roles and identities following predictive testing (Sobel and Cowan 2000;Tibben et al 1997). Moreover, their positive reactions to the session echo the call for stimulation of open communication in post-test counselling (Decruyenaere et al 2004), with approaches promoting open reflection and discussion of emotions, ideas and even painful experiences (Byng-Hall 1998;DudokdeWit et al 1998).…”

“…Alternatively the removal of long-held expectations of a mutation-positive result may be difficult to accept and cause disruption (Codori and Brandt 1994;Huggins et al 1992). Although a mutation-negative result may remove perceived barriers and allow the prospect of new lifestyle choices, couples may need to realign previously held views (Brouwer-Dudokdewit et al 2002;Sobel and Cowan 2000). Additionally, individuals may feel a responsibility to inform family members of their result, causing anxiety and changes to family relationships (Tibben et al 1993;Tibben et al 1992).…”

“…Re-construction of these roles and relationships may be required at different points in the lifecycle, depending upon the situations that people come to face (Brouwer-Dudokdewit et al 2002). This fluctuating impact on the individual and their wider family interactions ought to be considered within and beyond predictive testing (Sobel and Cowan 2000;Tibben et al 1997).…”

“…Encouragement of autonomy and active support-seeking may therefore be particularly helpful in improving coping strategies (Brouwer-Dudokdewit et al 2002;Rolland and Williams 2005). Concentration on open communication and connectedness are considered central to maintaining family relationships and reducing isolation (Decruyenaere et al 2004;Sobel and Cowan 2000;van Oostrom et al 2003). Work from psychotherapeutic practice and family systems therapy suggests that families who speak more openly and tell a 'coherent story' of their experiences allow reflection and discussion of emotions and ideas without avoidance or 'entanglement' in the subject (Byng-Hall 1998;DudokdeWit et al 1998).…”