Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey

Abstract

Caregivers of persons with special needs (PSN) experience a variety of burdens and elevated levels of stress and anxiety throughout their lives, leading to a physical, psychological, emotional, social, and financial overload. This analytical study with a cross-sectional design and a quantitative approach aimed to appraise quality of life (QoL), reflecting the daily workload of informal family caregivers of PSN. Methods: Four structured, validated questionnaires were utilised: sociodemographic, WHOQOL-bref, Zarit Burden Interview, and Functional Independence Measure Scale in 60 anonymous volunteered respondents. Results: The informal caregivers were middle-aged mothers (81.7%), married (55%), stay-at-home spouses (60%) with high school degrees (51.6%), providing a care for their relatives with special needs for more than 20 years (41.8%). Most of the PSN were diagnosed with autistic spectrum disorder (ASD, 61.8%), had a wide spectrum of intellectual deficits, and required constant support for their basic needs. They were mainly adolescent males without physical limitations (83.4%) on disorder-specific medications (90%). The study revealed that those caregivers had a median perception of QoL considering four essential domains, with a highest score recorded for the physical domain (64.3 +/− 16.1 SD). A moderate burden level prevailed, revealing neither a correlation between the workload expressed by caregivers and the patient’s functional capacity, nor in the performance of daily self-care tasks (Spearman correlation test p > 0.05), apart from the environmental domain (mild correlation = 0.335, p < 0.05). Conclusions: The reported average level of overload associated with QoL of informal caregivers exists, affecting a vast proportion of the respondents. The absence of a direct association between workload and the functional capacity/daily self-care tasks can be related to the significant personal dedication of family caregivers, regardless of their socioeconomic status.

Quality of life three months post‑stroke among stroke patients and their caregivers in a single center study from Romania during the COVID‑19 pandemic: A prospective study

“…Life satisfaction of family caregivers was associated with feelings and emotions of the patients only. It was strongly linked with the four WHOQOL-BREF domains (physical health, psychological health, environment, and social relationships) of the caregiver (30). Strong psychological repercussions may be generated for both patients and family caregivers (31).…”

Recruitment, retention, and adherence of family caregivers: Lessons from a multisite trial

“…Time limitations have been the leading cause of refusal and dropout reported by other studies involving family caregivers. 15 - 18 Family caregivers, day by day, must face the demands of caring for their loved ones and others' responsibilities, which cause feelings of overload 19 , 20 and lack of time, 21 making them restrict participation in research.…”