Predictors of the burden on family carers of patients on haemodialysis in Jordan

Abstract

In Jordan, the number of people with end-stage renal disease who receive dialysis in 2016 increased to 5130 (1). Most of these people (5048, 98%) received haemodialysis and 2% received peritoneal dialysis (1). However, the number of sessions a week varied between patients: 2% received treatment four times a week, 71% received treatment three times a week, 26% twice a week and 1% once a week, with the average duration of the treatment session being about four hours (1). Therefore, family members, including spouses and children, or friends, usually provide care for people on dialysis, which can be a challenge (2). Factors that can affect the burden on caregivers include patient characteristics and caregiver-related factors (3).Data on family caregivers for people with chronic kidney disease are not yet available in Jordan (1). However, the prevalence of haemodialysis is increasing and family members often have to take over the responsibility of care for the person receiving dialysis. According to Jordanian culture and traditions, family members have a commitment to caring for the sick (4).Previous studies indicate that family caregivers can suffer from depression as a result of caregiving. A study in Turkey found that the burden on caregivers has a direct effect on the quality of the caregiving delivered (5). The study further reported that emotional and psychological distress were common in caregiver spouses in relation to their cultural and traditional values. Other studies in Turkey reported that caregivers perceived that the burden of caring for people on haemodialysis was high (6,7). A more recent study also found that most patients with kidney disease and their family caregivers were depressed (8). Depression in people on dialysis was associated with their socioeconomic and marital status, while the socioeconomic status of caregivers was associated with caregivers' depression (8).Another study reported that the burden of caregiving was associated with the perceived difficulty of the tasks the caregiver was required to do and this burden strongly predicted caregiver depression (9). However, a study in Saudi Arabia found that caring for people receiving haemodialysis was a subjective burden that contributed to depression, social isolation, financial constraints and declining physical health (10). Furthermore, the demands associated with the provision of care for people on dialysis may result in caregivers making ineffective decisions that could adversely affect the way the caregiver manages the personal health needs of the person on dialysis (5).

Depression and psychosocial burden among caregivers of children with chronic kidney disease

“…This can be explained by highly perceived task difficulty by the caregiver, shortage of medical treatment/nursing services and transportation [32], plus the mandatory sticking to dietary restrictions and lifestyle behaviors affecting the family and social life flow. Also, nephrology team rely on the parents on the daily management of the patient at home, plus having to travel for long distance to attend the weekly clinic visits and dialysis sessions and having to cover some costs of unanticipated management obligations [33]. This is similar to a study that found that 69.4% of caregiver mothers reported feeling pain in the body among which 2.10% had moderate level of burden, whereas a high prevalence of moderate to severe depression and anxiety were reported in (18.4%) and anxiety (47%) of the caregivers respectively [34].…”

Assessing caregiver burden in advanced kidney disease: protocol for a systematic review of the measurement properties of instruments and tools

“…The urgency of addressing the issue of caregiver burden has been highlighted by studies conducted in both high-income countries like the USA and lower to middle-income countries like Turkey, Vietnam, Jordon, India, China Nigeria 8 15–22. Factors that contribute to caregiver burden may be categorised into patient-related and caregiver-related factors.…”