Caring in an atmosphere of uncertainty: perspectives and experiences of caregivers of peoples undergoing haemodialysis in Iran

Abstract

Background Chronic renal failure is one of the major causes of mortality and disability worldwide. Although dialysis treatment is considered as a life‐saving treatment for these patients, their caregivers face various problems making the atmosphere of caring uncertain. Aims This study is aimed to explore and describe the experiences and perspectives of family caregivers of the patients undergoing haemodialysis. Methods In this study, 20 haemodialysis family caregivers were selected by purposeful sampling. Data gathering techniques in this research were in‐depth and unstructured interview and field observation. The researchers used an inductive thematic analysis approach to analysing the interviews' data. Findings Three main themes emerged from the data indicating the patients' care are conducted in a state of uncertainty including constant struggle to learn, effort and adherence to the divine thread, and in disease's captivity. Conclusions Caring in an uncertain atmosphere leads to decreased efficiency and quality of family caregivers' care. To promote and improve the efficiency of care, healthcare planners should pay attention to the challenges and perspectives of caregivers of the patients undergoing haemodialysis.

Informal caregivers’ experiences of caring for people receiving dialysis: A mixed‐methods systematic review

“…; Rabiei et al . ; Williams ). In order to cope with the burden of caring, informal caregivers used religion, spirituality and meditation to keep them strong (Alnazly & Samara ; Welch et al .…”

“…These included being overwhelmed with caregiving responsibility, social isolation, and suffering decline in personal health and well-being. Due to the ongoing, unrelenting demands of dialysis therapy and its often-unpredictable complications and symptoms, caregivers described being overwhelmed with the responsibility for their family members (Welch et al 2014;Alnazly & Samara 2014;Rabiei et al 2016;Rodrigues de Lima et al 2017;Williams 2017). Informal caregivers described feelings of uncertainty, stressfulness and being frightened when their family member's health was unstable.…”

“…One of the biggest difficulties the informal caregivers experienced was social isolation (Alnazly & Samara 2014;Rabiei et al 2016;Williams 2017). It was described as feelings of loneliness, conflicting with other family members regarding decisions, having lack of support from the family, being unable to fulfill other normal social activities outside the sick person (e.g.…”

“…These experiences afforded caregivers an opportunity to develop a sense of self-worth and strength in being a caregiver. In three studies, informal caregivers described having hope and a positive outlook for their family members (De Rosenroll et al 2013;Rabiei et al 2016;Williams 2017). In order to cope with the burden of caring, informal caregivers used religion, spirituality and meditation to keep them strong (Alnazly & Samara 2014;Welch et al 2014;Rabiei et al 2016;Williams 2017).…”

Experience of the waiting area as perceived by haemodialysis patients and family carers

“…These characteristics can be explained by the uncertainty theory of Mishel (). The family carers undergo continuity of anxiety and hope through the uncertainty of care procedures (Rabiei, Eslami, Abedi, Masoudi, & Sharifirad, ) and the patients recognize uncertainty due to ambiguous and unpredictable circumstances related to their experience of the disease (Jang, Lee, & Yang, ). The study findings support those of previous studies describing the association of the concept of uncertainty with haemodialysis patients.…”