Iranian family caregivers’ challenges and issues in caring of multiple sclerosis patients: A descriptive explorative qualitative study

Abstract

ABSTRACT

Background: The broad spectrum of problems caused by multiple sclerosis (MS) imposes heavy responsibility to caregivers in caring of their patients. Therefore, they encounter many issues and challenges in this situation. The purpose of this study was to explore the experiences and challenges of MS family caregivers.

Materials and Methods: A qualitative design, based on a thematic analysis approach, was used to reach the study aim. Data were collected and analyzed concurrently through in-depth unstructured interviews, fi eld notes, and observations that were held with 23 participants (14 family caregivers and 9 MS patients) at two referral centers in Ahvaz, Iran.

Findings: Three major themes were extracted from the analysis of the transcripts: “emotional exhaustion of caregivers,” “uncertain atmosphere of caring,” and “insularity care.” The fi rst theme consisted of three subthemes: “stressful atmosphere of caring,” “confl ict and animism,” and “continuing distress affecting the caregiver.” The second theme consisted of three subthemes: “unstable and  complicacy of disease,” “caring with trial and error,” and “frequent hospitalization of patients,” and the third theme consisted of two subthemes: “caring gap and disintegration” and “lack of suffi cient support.”

Conclusions: This study will be useful to healthcare system for managing the challenges of MS patients’ family caregivers. Improving the conditions and performance of family caregivers is crucial in order to provide high-quality care to people with MS.

Key words: Challenges and issues, family caregivers, Iran, multiple sclerosis, nursing, qualitative research