Individual and Family Coping with Polycystic Kidney Disease: The Harvest of Denial

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Abstract
A multigeneration family with polycystic kidney disease (PCKD) was studied by personal interviews of all affected and most suspected-affected adults. A clear pattern of denial was identified, which strongly influenced individuals' awareness of PCKD and individuals' taking actions appropriate to that awareness, as well as family cohesion and communication. Time lags—in fact, availability, awareness and action-taking had serious consequences in terms of continued genetic transmission, future “burden” to the family and society, and the psychological stability of individual family members. The potentially important roles of the family physician in this type of familial disease are discussed as: a source of information, a facilitator of awareness and appropriate action, and a counselor in assisting adaptation to this major life stress.

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