An intangible reality: the experience of uncertainty among intimate partners of persons with prodromal huntington disease

Knowledge of genetic predisposition to future illness and disability creates uncertainties that shape and influence life decisions about reproduction, career, health behavior, and the need for care. Current research has not yet identified the meaning of the experience of feeling uncertain among intimate partners of persons who have received genetic information pertaining to future health status. The purpose of this phenomenological study was to understand the meaning of uncertainty as a lived experienced among intimate partners of persons who have tested positive for a mutation in the gene causing Huntington disease (HD) but have not yet been clinically diagnosed with HD. The specific aims were to create a rich, vivid description of uncertainty as experienced by this population and to present these findings within an existential phenomenological perspective. Using van Manen's hermeneutic-phenomenological methodology, experiential descriptions from 10 intimate partners of persons in the prodromal phase of HD were obtained. Thematic aspects of the lived experience of uncertainty were uncovered and isolated; essential themes were determined; and linguistic transformations were composed. The analysis revealed four essential themes, indicating that the meaning of the lived experience of uncertainty was 1) an intangible reality characterized by 2) anticipating with ebbing and flowing disquietude while feeling 3) a weighty pull to dwell upon, towards inner turmoil and 4) a subdued presence with freeing possibilities. The implications of these findings are that nurses need to ensure adequate opportunity is created in which the meaning of the lived experience of uncertainty can be ascertained and explored among persons who are on the cusp of the inevitable but not yet graspable. Continued research is needed to further address the implications of being situated in this potentially fracturing phase of the disease trajectory and to determine appropriate interventions.