Family Caregivers Perceptions of Patient’s Symptom Burden and Satisfaction with Palliative Care Services in a Tertiary Care Center in Saudi Arabia

Abstract

This study aimed to explore the family caregivers (FCs) perception of patients’ symptom burden as well as their experience and satisfaction with specialized palliative care services (PCS) in a tertiary care center in Kingdom of Saudi Arabia (KSA). Methods: A cross-sectional design assessed patients known to the PCS in a tertiary care center in Saudi Arabic from May 2023 to September 2023. FCs perceptions of patient’s symptom burden and satisfaction with PCS were studied through the Family Satisfaction with End-of-Life Care Scale (FAMCARE-2) and Arabic Questionnaire for Symptom Assessment (AQSA). Results: A convenience sample of 264 FCs agreed to participate (response rate = 94%). Approximately half of the participants were male (n=146; 55.7%). Participants were mostly aged between 30 to 50 years (n =148; 56%). Approximately half were receiving disease-modifying treatments. 101 (38.3%) had a Do-Not-Attempt-Resuscitation (DNAR) order. There was high satisfaction with how the services respected the dignity FCs (M = 4.6; SD=0.6). FCs were less satisfied with ‘the practical assistance provided by the PCS’ (M = 4.1; SD = 0.9). Satisfaction was higher in the outpatient setting (M = 4.3, SD = 0.7). The most severe symptom reported by FCs was ‘tiredness’, followed by ‘pain’. The mildest ones were ‘shortness of breath’, followed by ‘nausea/vomiting’. Conclusion: Overall, FCs have reported a positive experience with inpatient and outpatient PCS. FCs' greater satisfaction was observed in the outpatient setting with the possible rationale that inpatients are often more unstable and symptomatic.