Quality of life of caregivers of children with neurodevelopmental

Authors

DOI:

https://doi.org/10.5216/ree.v22.59629

Keywords:

Child, Nursing, Health-related Quality of Life, Neurodevelopmental Disorders, Caregivers

Abstract

Objective: To identify the health-related quality of life of caregivers of children with neurodevelopmental disorders and analyze the associated factors. Method: Observational, cross-sectional, quantitative study. A characterization instrument and The Medical Outcomes Study 36-Item Short were applied to 25 caregivers. The Mann-Whitney test and the Spearman’s correlation were used with a significance level of 5%. Among the health-related quality of life domains, vitality and bodily pain had the lowest scores. There was a significant difference between religious belief and social role functioning (p=0.046) and mental health (p=0.008) domains; and between marital status and the domains of social role functioning (p=0.029) and emotional role functioning (p=0.035). There was a negative correlation between physical functioning and the caregiver’s age. Conclusion: Caregivers of children with neurodevelopmental disorders feel tired and unwell. Religious belief, marital status and age were related factors.

Downloads

Download data is not yet available.

References

McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW, et al. A new definition of Children with Special Health Care Needs. Pediatrics [Internet]. 1998 [access at: Nov. 10, 2018];102(1):137-39. Available at: http://pediatrics.aappublications.org/content/102/1/137.short. https://doi.org/10.1542/peds.102.1.137.

McAllister JW, Keehn RM, Rodgers R, Lock TM. Implementation of a shared plan of care: a pilot approach to care coordination with children with neurodevelopmental disabilities. J Nurs Res Pract [Internet]. 2018 [access at: Nov. 10, 2018];2(2):1-5. Available at: https://www.pulsus.com/scholarly-articles/implementation-of-a-shared-plan-of-care-a-pilot-approach-to-care-coordination-with-children-with-neurodevelopmental-disabilities-4322.html.

American Psychiatric Association. Manual Diagnóstico e Estatístico de Transtornos Mentais: DSM-5. 5a ed. Porto Alegre: Artmed; 2014.

Arora NK, Nair MKC, Gulati S, Deshmukh V, Mohapatra A, Mishra D, et al. Neurodevelopmental disorders in children aged 2–9 years: population- based burden estimates across five regions in India. PLos Medicine [Internet]. 2018 [access at: Feb. 13, 2019];15(7):e1002615. Available at: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1002615. https://doi.org/10.1371/journal.pmed.1002615.

Pachêco MVGM, Campos CNA, Barbosa LNF, Alves JS, Fernandes JR. Caracterização e perfil epidemiológico de um serviço de psiquiatria infantil no Recife. Rev SBPH [Internet]. 2017 [access at: May 3, 2020];20(2):136- 52. Available at: http://pepsic.bvsalud.org/pdf/rsbph/v20n2/v20n2a09.pdf

Sayal K, Prasad V, Daley D, Ford T, Coghill D. ADHD in children and young people: prevalence, care pathways, and service provision. Lancet Psychiat [Internet]. 2018 [access at: May 30, 2020];5(2):175-86. Available at: https://www.sciencedirect.com/science/article/abs/pii/S2215036617301670. https://doi.org/10.1016/S2215-0366(17)30167-0.

Tabaquim MLM, Vieira RGS, Razera APR, Ciasca SM. Autoeficácia de cuidadores de crianças com o transtorno do espectro autista. Rev Psicopedag [Internet]. 2015 [access at: Feb. 13, 2019];32(99):285-92. Available at: http://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S010384862015000300002.

May T, Sciberras E, Brignell A, Williams K. Autism spectrum disorder: updated prevalence and comparison of two birth cohorts in a nationally representative Australian sample. BMJ Open [Internet]. 2017 [access at: May 30, 2020];7:e15549. Available at: https://bmjopen.bmj.com/content/bmjopen/7/5/e015549.full.pdf. https://doi.org/10.1136/bmjopen-2016-015549.

Loomes R, Hull L, Mandy WPL. What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. J Am Acad Child & Adolesc Psychiatry [Internet]. 2017 [access at: May 30, 2020]; 56(6):466- 74. Available at: https://www.sciencedirect.com/science/article/abs/pii/S0890856717301521. https://doi.org/10.1016/j.jaac.2017.03.013.

Corrêa MCCB, Queiroz SS. A família é o melhor recurso da criança: análise das trocas sociais entre mães e crianças com transtornos do espectro do autismo. Ciências & Cognição [Internet]. 2017 [access at: Jan. 13, 2019];22(1):41-62. Available at: http://cienciasecognicao.org/revista/index.php/cec/article/view/1382/pdf_87.

Faria AMDB, Cardoso CL. Estresse em cuidadores de crianças com transtorno do déficit de atenção e hiperatividade. Psico [Internet]. 2016 [access at: Feb. 23, 2019];47(3):228-37. Available at: http://pepsic.bvsalud.org/pdf/psico/v47n3/07.pdf. https://doi.org/10.15448/1980-8623.2016.3.21479.

Vasilopoulou E, Nisbet J. The quality of life of parents of children with autism spectrum disorder: a systematic review. Res Autism Spectr Disord [Internet]. 2016 [access at: Dec. 15, 2018];23:36-49. Available at: https://www.sciencedirect.com/science/article/pii/S1750946715300064. https://doi.org/10.1016/j.rasd.2015.11.008.

Hulley SB, Cumming SR, Browner WS, Grady DG, Newman TB. Delineando a pesquisa clínica: uma abordagem epidemiológica. 4a ed. Porto Alegre: Artmed; 2015.

Ciconelli RM, Ferraz MB, Santos W, Meinão I, Quaresma MR. Tradução para a língua portuguesa e validação do questionário genérico de avaliação de qualidade de vida SF-36 (Brasil SF-36). Rev Bras Reumatol [Internet]. 1999 [access at: Feb. 21, 2018];39(3):143-50. Available at: http://bases.bireme.br/cgi-bin/wxislind.exe/iah/online/?IsisScript=iah/iah.xis&src=google&base=LILACS&lang=p&nextAction=lnk&exprSearch=296502&indexSearch=ID.

Schlebusch L, Samuels AE, Dada S. South African families raising children with autism spectrum disorders: relationship between family routines, cognitive appraisal and family quality of life. J Intellect Disabil Res [Internet]. 2016 [access at: Mar. 25, 2019];60(5):412-23. Available at: https://www.ncbi.nlm.nih.gov/pubmed/27120985. https://doi.org/10.1111/jir.12292.

Yamaoka Y, Tamiya N, Izumida N, Kawamura A, Takahashi H, Noguchi H. The relationship between raising a child with a disability and the mental health of mothers compared to raising a child without disability in Japan. SSM – Population Health [Internet]. 2016 [access at: Mar. 25, 2019];2:542-48. Available at: https://www.sciencedirect.com/science/article/pii/S2352827316300507. https://doi.org/10.1016/j.ssmph.2016.08.001.

Sulkers E, Tissing WJE, Brinksma A, Roodbol PF, Kamps WA, Stewart RE, et al. Providing care to a child with cancer: a longitudinal study on the course, predictors, and impact of caregiving stress during the first year after diagnosis. Psycho-oncology [Internet]. 2015 [access at: Mar. 29, 2019];24(3):318-24. Available at: https://www.ncbi.nlm.nih.gov/pubmed/25113320. https://doi.org/10.1002/pon.3652.

Costa TF, Costa KNFM, Fernandes MGM, Martins KP, Brito SS. Quality of life of caregivers for patients of cerebrovascular accidents: association of (socio-demographic) characteristics and burden. Rev Esc Enferm USP [Internet]. 2015 [access at: Feb. 14, 2019];49(2):245-52. Available at: http://www.scielo.br/pdf/reeusp/v49n2/pt_0080-6234-reeusp-49-02-0245.pdf. https://doi.org/10.1590/S0080-623420150000200009.

Macedo EC, Silva LR, Paiva MS, Ramos MNP. Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review. Rev Latino- Am Enfermagem [Internet]. 2015 [access at: Feb. 13, 2019];23(4):769-77. Available at: http://www.scielo.br/pdf/rlae/v23n4/pt_0104-1169-rlae-23-04-00769.pdf. http://dx.doi.org/10.1590/0104-1169.0196.2613.

Schlebusch L, Dada S, Samuels AE. Family quality of life of South African families raising children with autism spectrum disorder. J Autism Dev Disord [Internet]. 2017 [access at: May 30, 2020];47(7):1966-77. Available at: https://link.springer.com/article/10.1007/s10803-017-3102-8. https://doi.org/10.1007/s10803-017-3102-8.

Pilapil M, Coletti DJ, Rabey C, DeLaet D. Caring for the Caregiver: supporting families of youth with special health care needs. Curr Probl Pediatr Adolesc Health Care [Internet]. 2017 [access at: Mar. 19, 2019];47(8):190- 99. Available at: https://www.sciencedirect.com/science/article/pii/S1538544217301396. https://doi.org/10.1016/j.cppeds.2017.07.003.

Davis III RF, Kiang L. Parental stress and religious coping by mothers of children with autism. Psychology of Religion and Spirituality [Internet]. 2018 [access at: June 02, 2019];12(2):137-48. Available at: http://psycnet.apa.org/record/2018-25180-001. https://doi.org/10.1037/rel0000183.

Marsack CN, Samuel PS. Mediating effects of social support on quality of life for parents of adults with autism. J Autism Dev Disord [Internet]. 2017 [access at: June 02, 2019]; 47:2378-89. Available at: https://link.springer.com/article/10.1007/s10803-017-3157-6. https://doi.org/10.1007/s10803-017-3157-6.

Published

2020-09-14

How to Cite

1.
Reis GA, Zonta JB, Camilo BHN, Fumincelli L, Gonçalves AM de S, Okido ACC. Quality of life of caregivers of children with neurodevelopmental. Rev. Eletr. Enferm. [Internet]. 2020 Sep. 14 [cited 2024 Jul. 17];22:59629. Available from: https://revistas.ufg.br/fen/article/view/59629

Issue

Section

Original Article