The Challenge of Caring for Incontinence: The Experience of Family Caregivers of Stroke Survivors

Purpose: Family caregivers’ experiences of caring for the older stroke relatives with urinary/fecal incontinence were explored.

Methods: A qualitative study was designed to elicit a rich understanding of the experience of family caregivers of older stroke survivors with incontinence. Grounded theory method was used to collect and analysis data from deep interviews with ten family caregivers of older stroke relatives with incontinence, aged 21-78 years, during 2011.

Results: Four major themes that emerged from these data were “being in chaos”, “being in vigilance”, “being in exhaustion” and “being in creating a new life on track”. Subthemes that arose within “the chaos” included “fluster” and “fuss” and “dirtiness”; in terms of “vigilance” shared subthemes “urgency” as well as “health-hazard”; the “exhaustion” were extracted “physical-consuming labor”, “mental-consuming labor” and “money/time-consuming labor” subthemes; the “creating a new life on track” constructed two subthemes “learning from professionals and accumulating experience by doing” and “attitude adjustment and forward looking”.

Conclusion: The research highlighted unique caring experiences of family caregivers of older stroke relatives focused on the ‘incontinence issue’ alone. To recognizing the progress of mental reactions of family caregivers in caring for older stroke relatives with incontinence may help nurses provide better supports and resources to meet their needs.