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

Author

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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
    Graduate Program in Dentistry, Health Institute of Nova Friburgo, Fluminense Federal University, Nova Friburgo 28625-650, RJ, Brazil)

  • Geraldo Oliveira Silva-Junior

    (Graduate Program in Dentistry, Health Institute of Nova Friburgo, Fluminense Federal University, Nova Friburgo 28625-650, RJ, Brazil
    Department of Diagnosis and Therapeutics, School of Dentistry, Rio de Janeiro State University, Rio de Janeiro 20551-031, 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)

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.

Suggested Citation

  • Andréa Lanzillotti Cardoso & Geraldo Oliveira Silva-Junior & Luciana Freitas Bastos & Ana Luiza Medeiros Cesar & Leila Goes Serrano & Arkadiusz Dziedzic & Bruna Lavinas Sayed Picciani, 2023. "Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey," IJERPH, MDPI, vol. 20(3), pages 1-11, January.
  • Handle: RePEc:gam:jijerp:v:20:y:2023:i:3:p:2012-:d:1043698
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