Caregiver Experiences of Caring for Family Members with Urostomy in China: A Qualitative Study

Abstract

Abstract Background In China, bladder tumors rank first for morbidity and mortality among urological and reproductive system tumors. In 2014, there were 78,100 new bladder tumor cases and 32,100 deaths in China, with morbidity and mortality rates of 5.71/100,000 and 2.35/100,000,respectively. Total radical cystectomy plus urinary flow conversion is the gold standard for the treatment of muscle-layer invasive bladder cancer. With an increasing number of radical cystectomies each year, the number of patients living with urostomy is growing. After discharge, primary care of urostomy patients is given at home, and high demands are placed on home caregivers due to issues of privacy and the complexity of replacing the urostomy device. This research explored the challenges faced by the family caregivers of urostomy patients. Methods We used descriptive qualitative research methods to conduct interviewswith twelve family caregivers of patients with urostomy. The interviewees were selected using the purposive sampling technique at the First Hospital of Shanxi Medical University. All interviews were recorded, transcribed, and analyzed using thematic analysis. Results Three critical challenges were identified – confusion, family crisis, and psychology. Within these three themes, six sub-themes emerged. They were knowledge and skill deficiency, uncertainty, role conflict, economic burden, emotional overwhelmed and calm acceptance. Conclusion Family caregivers play a critical role in patient care, and especially in urostomy care. Caregiving is associated with significant challenges that hinder the family caregiver’s ability to effectively care for the patient, further diminishing the caregiver’s quality of life. Therefore, healthcare professionals should consider the challenges faced by family caregivers and take measures to obviate them through education, preparation, and support.