Dimensions of Uncertainty After Stroke: Perspectives of the Stroke Survivor and Family Caregiver

Background: There has been limited examination of uncertainty after stroke. The effects of stroke extend beyond the stroke survivor to impact on the family, and thus, an exploration of uncertainty with the stroke survivor-caregiver dyad is important to gain a fuller understanding. Methods: Stroke survivors and their family caregivers (n = 33) participated in eight focus groups. Transcripts from the focus groups were examined for recurrent themes using content analysis. Mishel's theory of uncertainty was used as a framework to classify the themes. Results: Participants reported uncertainty about (a) future events, in particular, recurrent stroke; (b) signs and symptoms of stroke; (c) stroke risk factor management; and (d) resources for poststroke care. The uncertainty was brought on by the lack of predictability of these future events, lack of information, and the complexity of poststroke care and corresponded to Mishel's four key elements of ambiguity, deficient information, lack of clarity, and unpredictability. Conclusions: The fear of recurrent stroke was a pervasive theme and may represent a window of opportunity to work actively with stroke survivors in managing their risk factors. Although certain aspects of uncertainty after stroke cannot be eliminated, we can intervene with stroke survivors and family caregivers to assist them in reframing their responses to uncertainty and to foster coping and promote health.