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A Qualitative Study of Family Caregiver Experiences of Managing Incontinence in Stroke Survivors

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  • Chien-Ning Tseng
  • Guey-Shiun Huang
  • Po-Jui Yu
  • Meei-Fang Lou

Abstract

Background: Incontinence is a common problem faced by family caregivers that is recognized as a major burden and predictor of institutionalization. However, few studies have evaluated the experiences of family caregivers caring for stroke survivors with incontinence. Purpose: To describe experiences of caregivers managing incontinence in stroke survivors. Design: This qualitative descriptive study employed a grounded-theory approach. Methods: Semi-structured in-depth interviews with ten family caregivers of stroke survivors with incontinence were conducted during 2011. Audiotaped interviews were transcribed and analyzed using content analysis. Findings: Data analysis identified four themes: chaos, hypervigilance, exhaustion, and creating a new life. There were nine related subcategories: fluster, dirtiness, urgency, fear of potential health-hazard, physically demanding and time-consuming, mentally draining, financial burden, learning by doing, and attitude adjustment. Together, these described a process of struggling to cope with the care of stroke survivors with urinary/fecal incontinence. Of the four categories, “creating a new life” developed gradually over time to orient caregivers to their new life, while the other three categories occurred in a chronological order. Conclusion: The research highlighted unique caring experiences of family caregivers of stroke patients, which focused solely on the ‘incontinence issue’. Understanding these experiences may help nurses provide better support and resources for family caregivers when caring for stroke survivors with incontinence.

Suggested Citation

  • Chien-Ning Tseng & Guey-Shiun Huang & Po-Jui Yu & Meei-Fang Lou, 2015. "A Qualitative Study of Family Caregiver Experiences of Managing Incontinence in Stroke Survivors," PLOS ONE, Public Library of Science, vol. 10(6), pages 1-12, June.
    • Handle: RePEc:plo:pone00:0129540
    DOI: 10.1371/journal.pone.0129540
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    References listed on IDEAS

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    1. Frida Olsson & Carina Berterö, 2015. "Living with faecal incontinence: trying to control the daily life that is out of control," Journal of Clinical Nursing, John Wiley & Sons, vol. 24(1-2), pages 141-150, January.
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    Cited by:

    1. Josephine ME Gibson & Lois H Thomas & Joanna J Harrison & Caroline L Watkins & the ICONS Project Team and the ICONS Patient, Public and Carer Involvement Groups, 2018. "Stroke survivors’ and carers’ experiences of a systematic voiding programme to treat urinary incontinence after stroke," Journal of Clinical Nursing, John Wiley & Sons, vol. 27(9-10), pages 2041-2051, May.
    2. Myrta Kohler & Hanna Mayer & Jürg Kesselring & Susi Saxer, 2020. "Urinary incontinence in stroke survivors – Development of a programme theory," Journal of Clinical Nursing, John Wiley & Sons, vol. 29(15-16), pages 3089-3096, August.

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