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The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs

AIM: This study aims to reveal the problems faced by families of children with spinal muscular atrophy (SMA), by evaluating their care burden, needs, and expectations. MATERIALS AND METHODS: The participants were the primary caregivers of 34 children between the ages of 0 and 18 years diagnosed with...

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Autores principales: Evkaya Acar, Ayça, Karadağ Saygı, Evrim, İmamoğlu, Sena, Öztürk, Gülten, Ünver, Olcay, Ergenekon, Pınar, Gökdemir, Yasemin, Özel, Gülnur, Türkdoğan, Dilşad
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Turkish Pediatrics Association 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8655964/
https://www.ncbi.nlm.nih.gov/pubmed/35005732
http://dx.doi.org/10.5152/TurkArchPediatr.2021.20117
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author Evkaya Acar, Ayça
Karadağ Saygı, Evrim
İmamoğlu, Sena
Öztürk, Gülten
Ünver, Olcay
Ergenekon, Pınar
Gökdemir, Yasemin
Özel, Gülnur
Türkdoğan, Dilşad
author_facet Evkaya Acar, Ayça
Karadağ Saygı, Evrim
İmamoğlu, Sena
Öztürk, Gülten
Ünver, Olcay
Ergenekon, Pınar
Gökdemir, Yasemin
Özel, Gülnur
Türkdoğan, Dilşad
author_sort Evkaya Acar, Ayça
collection PubMed
description AIM: This study aims to reveal the problems faced by families of children with spinal muscular atrophy (SMA), by evaluating their care burden, needs, and expectations. MATERIALS AND METHODS: The participants were the primary caregivers of 34 children between the ages of 0 and 18 years diagnosed with SMA. Thirteen children were diagnosed with type 1, 13 children with type 2 and 8 children with type 3 SMA. Data on the medical history, functional levels of the participants, and the characteristics of families were collected. The childrens’ parents completed the Family Needs Survey and the Zarit Caregiver Burden Scale. RESULTS: According to the results of the Family Needs Survey, it was found that information was the most common requirement, and this was independent of the level of education. According to the Caregiver Burden Scale, it was recorded that 64.7% of the caregivers were under mild/moderate burden. While there was a moderate correlation (r = 0.574; P < .001) between the Caregiver Burden Scale and the Family Needs Survey, it was observed that the functional level of the child was not associated with family needs and caregiver burden. CONCLUSIONS: Our study suggests that the needs of families of SMA patients, especially related to income level, have changed. The caregivers’ burden is not directly related to the income level or the functional level of the child. Families’ need for information should also be prioritized within the rehabilitation program.
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spelling pubmed-86559642022-01-07 The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs Evkaya Acar, Ayça Karadağ Saygı, Evrim İmamoğlu, Sena Öztürk, Gülten Ünver, Olcay Ergenekon, Pınar Gökdemir, Yasemin Özel, Gülnur Türkdoğan, Dilşad Turk Arch Pediatr Original Article AIM: This study aims to reveal the problems faced by families of children with spinal muscular atrophy (SMA), by evaluating their care burden, needs, and expectations. MATERIALS AND METHODS: The participants were the primary caregivers of 34 children between the ages of 0 and 18 years diagnosed with SMA. Thirteen children were diagnosed with type 1, 13 children with type 2 and 8 children with type 3 SMA. Data on the medical history, functional levels of the participants, and the characteristics of families were collected. The childrens’ parents completed the Family Needs Survey and the Zarit Caregiver Burden Scale. RESULTS: According to the results of the Family Needs Survey, it was found that information was the most common requirement, and this was independent of the level of education. According to the Caregiver Burden Scale, it was recorded that 64.7% of the caregivers were under mild/moderate burden. While there was a moderate correlation (r = 0.574; P < .001) between the Caregiver Burden Scale and the Family Needs Survey, it was observed that the functional level of the child was not associated with family needs and caregiver burden. CONCLUSIONS: Our study suggests that the needs of families of SMA patients, especially related to income level, have changed. The caregivers’ burden is not directly related to the income level or the functional level of the child. Families’ need for information should also be prioritized within the rehabilitation program. Turkish Pediatrics Association 2021-07-01 /pmc/articles/PMC8655964/ /pubmed/35005732 http://dx.doi.org/10.5152/TurkArchPediatr.2021.20117 Text en © Copyright 2021 by The Turkish Archives of Pediatrics https://creativecommons.org/licenses/by-nc/4.0/Content of this journal is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License. (https://creativecommons.org/licenses/by-nc/4.0/)
spellingShingle Original Article
Evkaya Acar, Ayça
Karadağ Saygı, Evrim
İmamoğlu, Sena
Öztürk, Gülten
Ünver, Olcay
Ergenekon, Pınar
Gökdemir, Yasemin
Özel, Gülnur
Türkdoğan, Dilşad
The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs
title The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs
title_full The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs
title_fullStr The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs
title_full_unstemmed The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs
title_short The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs
title_sort burden of primary caregivers of spinal muscular atrophy patients and their needs
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8655964/
https://www.ncbi.nlm.nih.gov/pubmed/35005732
http://dx.doi.org/10.5152/TurkArchPediatr.2021.20117
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