Dados do Trabalho

Título

QUALITY OF LIFE OF FAMILIES AND SIBLINGS OF CHILDREN WITH CEREBRAL PALSY TREATED AT A REFERENCE NEUROREHABILITATION CENTER IN BRAZIL

Introdução

Cerebral palsy is a major cause of childhood disability. Besides physical disability, clinical, neurological, orthopedic, sensory, mental health, and neurodevelopmental disorders may coexist and require continuous care. Consequently, there is a risk of burden on the main caregiver and an impact on the family and siblings’ quality of life.

Objetivo

To investigate the associations between caregivers’ burden, family quality of life, and siblings’ quality of life in Brazilian families of children with cerebral palsy, and to analyze siblings’ quality of life using as a parameter the quality of life of typically developed Brazilian children.

Método

It was a cross-sectional study. The 212 families, 212 caregivers and 131 siblings completed the Family Quality of Life Scale, Burden Interview, and KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires at a neurorehabilitation center in southeast Brazil. Univariable and multivariable models were used.

Resultados

Family quality of life significantly worsened as caregivers’ burden increased (95 % CI -0.66 to-0.38). Caregivers’ burden was significantly lower with increasing family quality of life scores (95 % CI-0.52 to -0.30). Self-reported siblings’ quality of life was significantly worse than that of their typically developed peers (95 % CI -7.6 to -3.6). Self-reported siblings’ quality of life was significantly lower as siblings’ age (95 % CI -2.52 to -0.59) and caregivers’ burden (95 % CI -0.35 to -0.05) increased. Parent-reported siblings’ quality of life was significantly lower with increasing caregivers’ burden (95 % CI-0.45 to -0.16) and higher as family quality of life increased (95 % CI 0.09 to 0.37).

Conclusão

The cross-sectional nature of these data precludes any statement of causality. Family quality of life worsened with higher caregivers’ burden levels. Lower caregivers’ burden scores were associated with a higher family quality of life. Siblings’ quality of life was impaired as compared to typically developed peers, worse among older siblings, and as caregivers’ burden increased and better with higher family quality of life levels. Future multicenter studies may validate the generalizability of the present findings.

Referências

1. Oskoui M, Coutinho F, Dykeman J, Jette N, Pringsheim T. An update on the prevalence of cerebral palsy: a systematic review
and meta-analysis. Dev Med Child Neurol. 2013;55:509
19.
2. Sadeghi S, Fayed N, Ronen GM. Patient-reported outcome measures in pediatric epilepsy: a content analysis using World Health
Organization definitions. Epilepsia. 2014;55:1431
7.
3. Zuna N, Summers JA, Turnbull AP, Hu X, Xu S. Theorizing about family quality of live. In: Kober R, ed. Enhancing the Quality of
Life of People With Intellectual Disabilities: From Theory to Practice, London: Springer; 2010:241
78.
4. Oliveira AR, Gongalvez GR, Loffred MD, Grecco LH. Avaliacão da sobrecarga dos cuidadores informais atraves da Escala Burden

interview atendidos durante o estagio de
fisioterapia em Saude
Coletiva. Revista de Atenc¸ ao ~ a Sa  ude. 2019;16:75

83.
5. Glinac A, Matovi
c L, Delali
c A, Mesali
c L. Quality of life in mothers of children with cerebral palsy. Acta Clin Croat. 2017;56:299
307.
6. Tseng MH, Chen KL, Shieh JY, Lu L, Huang CY, Simeonsson RJ. Child characteristics, caregiver characteristics, and environ-
mental factors affecting the quality of life of caregivers of children with cerebral palsy. Disabil Rehabil. 2016;38:2374
82.
7. Davis E, Shelly A, Waters E, Boyd R, Cook K, Davern M, et al. The impact of caring for a child with cerebral palsy: quality
of life for mothers and fathers. Child Care Health Dev. 2010;36:63
73.
8. Dobhal M, Juneja M, Jain R, Sairam S, Thiagarajan D. Health- related quality of life in children with cerebral palsy and their
families. Indian Pediatr. 2014;51:385
7.
9. Ko»tuniuk A, Rozensztrauch A, Budzinska P, Rosi
nczuk J. The quality of life of polish children with cerebral palsy and the
impact of the disease on the family functioning. J Pediatr Nurs. 2019;47:e75
82.
10. Sogbossi ES, Houekpetodji D, Kpadonou TG, Bleyenheuft Y. Mothers' perception of cerebral palsy in a low-income country
of West Africa: a cross-sectional study. Disabil Rehabil. 2022;44:4767
74.
11. Ljubici
c M, Delin S, Kolci
c I. Family and individual quality of life in parents of children with developmental disorders and diabe-
tes type 1. J Clin Med. 2022;11:2861.
12. Schertz M, Karni-Visel Y, Tamir A, Genizi J, Roth D. Family quality of life among families with a child who has a severe neurode-
velopmental disability: impact of family and child socio-demographic factors. Res Dev Disabil. 2016;53-4:95
106.
13. Dinleyici M, Carman KB, ¸ Ozdemir C, Harmanc € { K, Eren M, Kirel B, et al. Quality-of-life evaluation of healthy siblings of children
with chronic illness. Balkan Med J. 2019;37:34
42.
14. Fejes M, Varga B, Hollody K. The impact of disease and sociodemographic background on children suffering from cerebral
palsy. Orv Hetil. 2021;162:269
79.
15. Levy-Zaks A, Pollak Y, Ben-Pazi H. Cerebral palsy risk factors and their impact on psychopathology. Neurol Res. 2014;36:92
4.
16. Dogbe JA, Kyeremateng JDA, Opoku MP, Nketsia W, Hammond C.There is family tension, but they understand. . .': familial and
sibling relationships following the diagnosis of cerebral palsy in children in Ghana. Int J Dev Disabil. 2019;68:35
46.
17. Dallas E, Stevenson J, McGurk H. Cerebral-palsied children's interactions with siblings
I. Influence of severity of disability, age and
birth order. J Child Psychol Psychiatry. 1993;34:621
47.
18. Rana P, Mishra D. Quality of life of unaffected siblings of children with chronic neurological disorders. Indian J Pediatr.
2015;82:545
8.
19. Aran A, Shalev RS, Biran G, Gross-Tsur V. Parenting style impacts on quality of life in children with cerebral palsy. J Pediatr.
2007;151:56
60. 60.e1.
20. BM Jorge, Levy CC, Granato L. Cultural adaptation quality of family life scale for the Brazilian Portuguese. Codas.
2015;27:534
40.
21. Scazufca M. Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with men-
tal illnesses. Braz J Psychiatry. 2002;24:12
7.
22. Ravens-Sieberer U, Gosch A, Rajmil L, Erhart M, Bruil J, Duer W, et al. KIDSCREEN-52 quality-of-life measure for children and ado-
lescents. Expert Rev Pharmacoecon Outcomes Res. 2005;5:353
64.
23. Ravens-Sieberer U, Herdman M, Devine J, Otto C, Bullinger M, Rose M, et al. The European KIDSCREEN approach to measure
quality of life and well-being in children: development, current application, and future advances. Qual Life Res. 2014;23:791
803.
24. The KIDSCREEN Group Europe. The KIDSCREEN Questionnaires: Quality of Life Questionnaires For Children and Adolescents.
Lengerich: Pabst Science Publishers; 2006.
25. Junior Farias JC, MR Loch, Neto Lima AJ, Sales JM, Ferreira
FE. Reproducibility, internal consistency, and construct validity of KIDSCREEN-27 in Brazilian adolescents. Cad Saude Publica. 2017;33:e00131116. https://doi.org/10.1590/0102- 5
311£00131116.
26. Associac¸ ao Brasileira de Empresas de Pesquisa [Internet]. S ~ ao ~ Paulo: Associac¸ ao Brasileira de Empresas de Pesquisa; c2014-2022 [cited 2021 mar 21]. Criterio Brasil. 2021. Available from: https://www.abep.org/criterio-brasil.
27. Hiratuka E, Matsukura TS, Pfeifer LI. Cross-cultural adaptation of the Gross Motor Function Classification System into Brazilian-
Portuguese (GMFCS). Rev Bras Fisioter. 2010;14:537
44.
28. Silverio CC, Sellers D, Curcio D, Rebelo Gon
calves MI. Eating and ¸ drinking ability classification system
EDACS: cross-cultural
adaptation of the Brazilian Portuguese. Disturb Comun. 2022;34:e564
70.
29. Kusi-Mensah K, Nuamah ND, Wemakor S, Agorinya J, Seidu R, Martyn-Dickens C, et al. Assessment tools for executive function
and adaptive function following brain pathology among children in developing country contexts: a scoping review of current
tools. Neuropsychol Rev. 2022;32:459
82.
30. Fisher RS, Acevedo C, Arzimanoglou A, Bogacz A, Cross JH, Elger CE, et al. ILAE official report: a practical clinical definition of
epilepsy. Epilepsia. 2014;55:475
82.

Palavras Chave

quality of life; Cerebral palsy; sibling