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

Andréa Lanzillotti Cardoso, Geraldo Oliveira Silva-Junior, Luciana Freitas Bastos, Ana Luiza Medeiros Cesar, Leila Goes Serrano, Arkadiusz Dziedzic () and Bruna Lavinas Sayed Picciani ()
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Andréa Lanzillotti Cardoso: Department of Preventive and Community Dentistry, School of Dentistry, Rio de Janeiro State University, Rio de Janeiro 20551-031, RJ, Brazil
Geraldo Oliveira Silva-Junior: Graduate Program in Dentistry, Health Institute of Nova Friburgo, Fluminense Federal University, Nova Friburgo 28625-650, RJ, Brazil
Luciana Freitas Bastos: Department of Preventive and Community Dentistry, School of Dentistry, Rio de Janeiro State University, Rio de Janeiro 20551-031, RJ, Brazil
Ana Luiza Medeiros Cesar: Graduate Program in Dentistry, Health Institute of Nova Friburgo, Fluminense Federal University, Nova Friburgo 28625-650, RJ, Brazil
Leila Goes Serrano: Department of Preventive and Community Dentistry, School of Dentistry, Rio de Janeiro State University, Rio de Janeiro 20551-031, RJ, Brazil
Arkadiusz Dziedzic: Department of Conservative Dentistry with Endodontics, Medical University of Silesia, 40-055 Katowice, Poland
Bruna Lavinas Sayed Picciani: Graduate Program in Dentistry, Health Institute of Nova Friburgo, Fluminense Federal University, Nova Friburgo 28625-650, RJ, Brazil

IJERPH, 2023, vol. 20, issue 3, 1-11

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.

Keywords: caregivers; quality of life; disabilities; special needs; autistic spectrum disorder; survey (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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