Quality of life of caregivers of children with neurodevelopmental
DOI:
https://doi.org/10.5216/ree.v22.59629Keywords:
Child, Nursing, Health-related Quality of Life, Neurodevelopmental Disorders, CaregiversAbstract
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.
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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.
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