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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
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 app...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9916369/ https://www.ncbi.nlm.nih.gov/pubmed/36767379 http://dx.doi.org/10.3390/ijerph20032012 |
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author | Cardoso, Andréa Lanzillotti Silva-Junior, Geraldo Oliveira Bastos, Luciana Freitas Cesar, Ana Luiza Medeiros Serrano, Leila Goes Dziedzic, Arkadiusz Picciani, Bruna Lavinas Sayed |
author_facet | Cardoso, Andréa Lanzillotti Silva-Junior, Geraldo Oliveira Bastos, Luciana Freitas Cesar, Ana Luiza Medeiros Serrano, Leila Goes Dziedzic, Arkadiusz Picciani, Bruna Lavinas Sayed |
author_sort | Cardoso, Andréa Lanzillotti |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-9916369 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-99163692023-02-11 Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey Cardoso, Andréa Lanzillotti Silva-Junior, Geraldo Oliveira Bastos, Luciana Freitas Cesar, Ana Luiza Medeiros Serrano, Leila Goes Dziedzic, Arkadiusz Picciani, Bruna Lavinas Sayed Int J Environ Res Public Health Article 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. MDPI 2023-01-21 /pmc/articles/PMC9916369/ /pubmed/36767379 http://dx.doi.org/10.3390/ijerph20032012 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Article Cardoso, Andréa Lanzillotti Silva-Junior, Geraldo Oliveira Bastos, Luciana Freitas Cesar, Ana Luiza Medeiros Serrano, Leila Goes Dziedzic, Arkadiusz Picciani, Bruna Lavinas Sayed Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey |
title | Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey |
title_full | Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey |
title_fullStr | Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey |
title_full_unstemmed | Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey |
title_short | Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey |
title_sort | preliminary assessment of the quality of life and daily burden of caregivers of persons with special needs: a questionnaire-based, cross-sectional survey |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9916369/ https://www.ncbi.nlm.nih.gov/pubmed/36767379 http://dx.doi.org/10.3390/ijerph20032012 |
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