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Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers

BACKGROUND: The primary caregiver is an important person in the life of patients with JIA. Their reactions depend on social, emotional and economic factors that affect the therapeutic alliance. Some generic instruments have been used to evaluate burden, anxiety, or quality of life of caregivers. Thi...

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Autores principales: Torres-Made, Marcia Daniela, Peláez-Ballestas, Ingris, García-Rodríguez, Fernando, Villarreal-Treviño, Ana Victoria, Fortuna-Reyna, Brenda de Jesús, de la O-Cavazos, Manuel Enrique, Rubio-Pérez, Nadina Eugenia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6961380/
https://www.ncbi.nlm.nih.gov/pubmed/31937332
http://dx.doi.org/10.1186/s12969-020-0400-z
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author Torres-Made, Marcia Daniela
Peláez-Ballestas, Ingris
García-Rodríguez, Fernando
Villarreal-Treviño, Ana Victoria
Fortuna-Reyna, Brenda de Jesús
de la O-Cavazos, Manuel Enrique
Rubio-Pérez, Nadina Eugenia
author_facet Torres-Made, Marcia Daniela
Peláez-Ballestas, Ingris
García-Rodríguez, Fernando
Villarreal-Treviño, Ana Victoria
Fortuna-Reyna, Brenda de Jesús
de la O-Cavazos, Manuel Enrique
Rubio-Pérez, Nadina Eugenia
author_sort Torres-Made, Marcia Daniela
collection PubMed
description BACKGROUND: The primary caregiver is an important person in the life of patients with JIA. Their reactions depend on social, emotional and economic factors that affect the therapeutic alliance. Some generic instruments have been used to evaluate burden, anxiety, or quality of life of caregivers. This study aims to develop a specific instrument to measure the psychosocial and economic impacts on primary caregivers of patients with JIA. METHODOLOGY: This is a mixed methods research, that includes qualitative and quantitative data, and was carried out in two phases. First phase: a pragmatic qualitative study (questionnaire construction) was conducted in two parts, a non-systematic literature review followed by interviews with primary caregivers. Second phase: a cross-sectional study (questionnaire validation) to complete validation and estimate Cronbach’s alphas based on tetrachoric correlation coefficients, correlation matrix and Cohen’s kappa coefficient test. RESULTS: There were 38 articles found related to the experience of caregivers. 15 primary caregivers were interviewed (female 93%, median age 45 years). Thematic analysis identified 9 important topics from the perspective of participants (economic impact, coping, family roles, impact of diagnosis, mental health, couple/mate relationships, impact at work, religion, and knowledge of the disease). These topics were combined to create the interview questionnaire (56 items). Later, it was modified to 62 items that were divided into five dimensions: impact of the disease (psychosocial, economic, family, and relationships), knowledge of the disease, alternative medicine, future, and religion. The interview questionnaire was applied to 32 primary caregivers (female 93%, median age 37 years), results identify depression on 29 (90%), 18 (56%) feel sadness at diagnosis, 20 (63%) mentioned that JIA has influenced in their financial situation, 23 (72%) feel anxiety about the future, and 11 (37%) considered that their family relationships have changed. Statistical analysis identified inconsistencies during convergent and divergent validity of the construct. Consequently, 11 items were eliminated, 3 relocated, 6 modified, and 39 compacted obtaining the “Impact of Pediatric Rheumatic Diseases on Caregivers Multi-assessment Questionnaire” (CAREGIVERS questionnaire). This final version resulted on an eight-dimension (28 items) instrument. CONCLUSIONS: The CAREGIVERS questionnaire captures perspectives of both the participants and clinicians. It will be helpful to measure the impact of the disease and thus, to improve the quality of care of children with JIA and their families.
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spelling pubmed-69613802020-01-17 Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers Torres-Made, Marcia Daniela Peláez-Ballestas, Ingris García-Rodríguez, Fernando Villarreal-Treviño, Ana Victoria Fortuna-Reyna, Brenda de Jesús de la O-Cavazos, Manuel Enrique Rubio-Pérez, Nadina Eugenia Pediatr Rheumatol Online J Research Article BACKGROUND: The primary caregiver is an important person in the life of patients with JIA. Their reactions depend on social, emotional and economic factors that affect the therapeutic alliance. Some generic instruments have been used to evaluate burden, anxiety, or quality of life of caregivers. This study aims to develop a specific instrument to measure the psychosocial and economic impacts on primary caregivers of patients with JIA. METHODOLOGY: This is a mixed methods research, that includes qualitative and quantitative data, and was carried out in two phases. First phase: a pragmatic qualitative study (questionnaire construction) was conducted in two parts, a non-systematic literature review followed by interviews with primary caregivers. Second phase: a cross-sectional study (questionnaire validation) to complete validation and estimate Cronbach’s alphas based on tetrachoric correlation coefficients, correlation matrix and Cohen’s kappa coefficient test. RESULTS: There were 38 articles found related to the experience of caregivers. 15 primary caregivers were interviewed (female 93%, median age 45 years). Thematic analysis identified 9 important topics from the perspective of participants (economic impact, coping, family roles, impact of diagnosis, mental health, couple/mate relationships, impact at work, religion, and knowledge of the disease). These topics were combined to create the interview questionnaire (56 items). Later, it was modified to 62 items that were divided into five dimensions: impact of the disease (psychosocial, economic, family, and relationships), knowledge of the disease, alternative medicine, future, and religion. The interview questionnaire was applied to 32 primary caregivers (female 93%, median age 37 years), results identify depression on 29 (90%), 18 (56%) feel sadness at diagnosis, 20 (63%) mentioned that JIA has influenced in their financial situation, 23 (72%) feel anxiety about the future, and 11 (37%) considered that their family relationships have changed. Statistical analysis identified inconsistencies during convergent and divergent validity of the construct. Consequently, 11 items were eliminated, 3 relocated, 6 modified, and 39 compacted obtaining the “Impact of Pediatric Rheumatic Diseases on Caregivers Multi-assessment Questionnaire” (CAREGIVERS questionnaire). This final version resulted on an eight-dimension (28 items) instrument. CONCLUSIONS: The CAREGIVERS questionnaire captures perspectives of both the participants and clinicians. It will be helpful to measure the impact of the disease and thus, to improve the quality of care of children with JIA and their families. BioMed Central 2020-01-14 /pmc/articles/PMC6961380/ /pubmed/31937332 http://dx.doi.org/10.1186/s12969-020-0400-z Text en © The Author(s). 2020 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Torres-Made, Marcia Daniela
Peláez-Ballestas, Ingris
García-Rodríguez, Fernando
Villarreal-Treviño, Ana Victoria
Fortuna-Reyna, Brenda de Jesús
de la O-Cavazos, Manuel Enrique
Rubio-Pérez, Nadina Eugenia
Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers
title Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers
title_full Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers
title_fullStr Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers
title_full_unstemmed Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers
title_short Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers
title_sort development and validation of the caregivers questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6961380/
https://www.ncbi.nlm.nih.gov/pubmed/31937332
http://dx.doi.org/10.1186/s12969-020-0400-z
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