Evaluation of quality of life, depression, anxiety and stress among caregivers of people with or without Down Syndrome: a cross-sectional study
DOI:
https://doi.org/10.33448/rsd-v9i8.6193Keywords:
Down syndrome; Quality of life; Depression; Anxiety; Caregivers.Abstract
The act of caring, being responsible for the survival and quality of life of others, represent extra activities that can cause socio-emotional changes to those who perform this function. Objective: To assess the quality of life, depression, anxiety and stress of caregivers of people with or without Down syndrome. Methodology: 144 caregivers were divided into Control Group (caregivers of typical children) and Down Syndrome Group (caregivers of people with Down Syndrome). The controlled observational cross-sectional study was prepared in accordance with the Declaration of Helsinki and approved by the Human Ethics Committee. To achieve the objectives, validated questionnaires related to the theme were applied. The data were subjected to the Chi-square test with modified Bonferroni post hoc and Rank or Pearson correlation tests. Results: The Down Syndrome Group had a lower quality of life related to the psychological domain and a higher environmental domain than the Control Group. In the groups studied, quality of life and family income showed a positive correlation (p = 0.02) and there was no difference in depression. The Control Group had a higher rate of anxiety and the Down Syndrome Group had a higher rate of physical symptoms of stress; correlated with the degree of dependence of the Down Syndrome patient (p = 0.04). Conclusion: Family income is an important factor for a better quality of life, symptoms of physical stress reduce the quality of life in the psychological domain and symptoms of physical stress of caregivers are correlated with a greater degree of dependence of patients with Down Syndrome.
References
A'Campo, L. E., Spliethoff-Kamminga, N. G., Macht, M., EduPark Consortium, & Roos, R. A. (2010). Caregiver education in Parkinson's disease: formative evaluation of a standardized program in seven European countries. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 19(1), 55–64. https://doi.org/10.1007/s11136-009-9559-y
Amendola, F., Oliveira, M. A. C., Alvarenga, M. R. M. (2008) Qualidade de vida dos cuidadores de pacientes dependentes no programa de saúde da família. Texto & Contexto - Enfermagem, 17(2), 266-272. https://doi.org/10.1590/S0104-07072008000200007
Amêndola, F., Oliveira, M. A. C., Alvarenga, M. R. M. (2011) Influence of social support on the quality of life of family caregivers while caring for people with dependence. Revista da Escola de Enfermagem da USP, 45(4), 884-889. https://doi.org/10.1590/S0080-62342011000400013
Baghdadli, A., Pry, R., Michelon, C., & Rattaz, C. (2014). Impact of autism in adolescents on parental quality of life. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 23(6), 1859–1868. https://doi.org/10.1007/s11136-014-0635-6
Barbosa, A. P. M., Zampa, T. N., Iwabe, C., Diz, M. A. R. (2012) Relationship Among Caregivers Burden, Functionality and Quality of Life in Children with Cerebral Palsy. Revista Neuro¬ciências 20, 367-371.
Blacher, J., Baker, B. L., & Kaladjian, A. (2013). Syndrome specificity and mother-child interactions: examining positive and negative parenting across contexts and time. Journal of autism and developmental disorders, 43(4), 761–774. https://doi.org/10.1007/s10803-012-1605-x
Bocchi S. C. (2004). Vivenciando a sobrecarga ao vir-a-ser um cuidador familiar de pessoa com acidente vascular cerebral (AVC): análise do conhecimento [Living the burden in becoming a family caregiver for a cerebrovascular accident survivor: knowledge analysis]. Revista latino-americana de enfermagem, 12(1), 115–121. https://doi.org/10.1590/s0104-11692004000100016
Bourke, J., Ricciardo, B., Bebbington, A., Aiberti, K., Jacoby, P., Dyke, P., Msall, M., Bower, C., & Leonard, H. (2008). Physical and mental health in mothers of children with Down syndrome. The Journal of pediatrics, 153(3), 320–326. https://doi.org/10.1016/j.jpeds.2008.02.047
Buzatto, L. L., Beresin, R. (2008) Quality of life of parents with Down syndrome children. Einstein 6(2), 175-81.
Caicedo C. (2014). Families with special needs children: family health, functioning, and care burden. Journal of the American Psychiatric Nurses Association, 20(6), 398–407. https://doi.org/10.1177/1078390314561326
Canbulat, N., Demirgöz Bal, M., & Çoplu, M. (2014). Emotional reactions of mothers who have babies who are diagnosed with Down syndrome. International journal of nursing knowledge, 25(3), 147–153. https://doi.org/10.1111/2047-3095.12026
Geok, C. K., Abdullah, K. L., & Kee, L. H. (2013). Quality of life among Malaysian mothers with a child with Down syndrome. International journal of nursing practice, 19(4), 381–389. https://doi.org/10.1111/ijn.12083
Choi, E. K., & Yoo, I. Y. (2015). Resilience in families of children with Down syndrome in Korea. International journal of nursing practice, 21(5), 532–541. https://doi.org/10.1111/ijn.12321
Cless, J. D., Nelson Goff, B. S., & Durtschi, J. A. (2018). Hope, Coping, and Relationship Quality in Mothers of Children With Down Syndrome. Journal of marital and family therapy, 44(2), 307–322. https://doi.org/10.1111/jmft.12249
Corrice, A. M., & Glidden, L. M. (2009). The Down syndrome advantage: fact or fiction?. American journal on intellectual and developmental disabilities, 114(4), 254–268. https://doi.org/10.1352/1944-7558-114.4.254-268
Crowe T. K. (1993). Time use of mothers with young children: the impact of a child's disability. Developmental medicine and child neurology, 35(7), 621–630. https://doi.org/10.1111/j.1469-8749.1993.tb11700.x
Daunhauer, L. A., & Fidler, D. J. (2011). The down syndrome behavioral phenotype: implications for practice and research in occupational therapy. Occupational therapy in health care, 25(1), 7–25. https://doi.org/10.3109/07380577.2010.535601
Etters, L., Goodall, D., & Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners, 20(8), 423–428. https://doi.org/10.1111/j.1745-7599.2008.00342.x
Fernandes, B. C. W., Ferreira, K. C. P., Marodin, M. F., do Val, M. O. N., Fréz, A. R. (2013) Influência das orientações fisioterapêuticas na qualidade de vida e na sobrecarga de cuidadores. Fisioterapia em Movimento, 26(1), 151-158. https://dx.doi.org/10.1590/S0103-51502013000100017
Fleck, M. P. A. (2000) The World Health Organization instrument to evaluate quality of life (WHOQOL-100): characteristics and perspectives. Ciência & Saúde Coletiva, 5(1), 33-38. https://doi.org/10.1590/S1413-81232000000100004
Giallo, R., Wood, C. E., Jellett, R., & Porter, R. (2013). Fatigue, wellbeing and parental self-efficacy in mothers of children with an autism spectrum disorder. Autism : the international journal of research and practice, 17(4), 465–480. https://doi.org/10.1177/1362361311416830
Gorenstein, C., & Andrade, L. (1996). Validation of a Portuguese version of the Beck Depression Inventory and the State-Trait Anxiety Inventory in Brazilian subjects. Brazilian journal of medical and biological research = Revista brasileira de pesquisas medicas e biologicas, 29(4), 453–457.
Hamlyn-Wright, S., Draghi-Lorenz, R., & Ellis, J. (2007). Locus of control fails to mediate between stress and anxiety and depression in parents of children with a developmental disorder. Autism : the international journal of research and practice, 11(6), 489–501. https://doi.org/10.1177/1362361307083258
Hedov, G., Annerén, G., & Wikblad, K. (2000). Self-perceived health in Swedish parents of children with Down's syndrome. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 9(4), 415–422. https://doi.org/10.1023/a:1008910527481
Hedov, G., Annerén, G., & Wikblad, K. (2002). Swedish parents of children with Down's syndrome. Scandinavian journal of caring sciences, 16(4), 424–430. https://doi.org/10.1046/j.1471-6712.2002.00109.x
Hodapp R. M. (2007). Families of persons with Down syndrome: new perspectives, findings, and research and service needs. Mental retardation and developmental disabilities research reviews, 13(3), 279–287. https://doi.org/10.1002/mrdd.20160
Huang, C. Y., Sousa, V. D., Perng, S. J., Hwang, M. Y., Tsai, C. C., Huang, M. H., & Yao, S. Y. (2009). Stressors, social support, depressive symptoms and general health status of Taiwanese caregivers of persons with stroke or Alzheimer's disease. Journal of clinical nursing, 18(4), 502–511. https://doi.org/10.1111/j.1365-2702.2008.02443.x
Karsch U. M. (2003). Idosos dependentes: famílias e cuidadores [Dependent seniors: families and caregivers]. Cadernos de saude publica, 19(3), 861–866. https://doi.org/10.1590/s0102-311x2003000300019
Lim, J. W., & Zebrack, B. (2004). Caring for family members with chronic physical illness: a critical review of caregiver literature. Health and quality of life outcomes, 2, 50. https://doi.org/10.1186/1477-7525-2-50
Lipp, M. E. N. (2005) Manual do Inventário de Sintomas de Stress para Adultos de LIPP (ISSL).
Marchal, J. P., Maurice-Stam, H., Hatzmann, J., van Trotsenburg, A. S., & Grootenhuis, M. A. (2013). Health related quality of life in parents of six to eight year old children with Down syndrome. Research in developmental disabilities, 34(11), 4239–4247. https://doi.org/10.1016/j.ridd.2013.09.011
Minayo, M. C. S., Harz, Z. M. A., Buss, P. M. (2000) Qualidade de vida e saúde: um debate necessário. Ciência & Saúde Coletiva, 5(1), 7-18. https://doi.org/10.1590/S1413-81232000000100002
Oliveira, E., & Limongi, S. C. (2011). Quality of life of parents/caregivers of children and adolescents with Down syndrome. Jornal da Sociedade Brasileira de Fonoaudiologia, 23(4), 321–327. https://doi.org/10.1590/s2179-64912011000400006
Padeliadu S. (1998). Time demands and experienced stress in Greek mothers of children with Down's syndrome. Journal of intellectual disability research : JIDR, 42 ( Pt 2), 144–153. https://doi.org/10.1046/j.1365-2788.1998.00113.x
Parkes, J., Caravale, B., Marcelli, M., Franco, F., & Colver, A. (2011). Parenting stress and children with cerebral palsy: a European cross-sectional survey. Developmental medicine and child neurology, 53(9), 815–821. https://doi.org/10.1111/j.1469-8749.2011.04014.x
Quintão, Sónia, Delgado, Ana R., & Prieto, Gerardo. (2013). Validity study of the Beck Anxiety Inventory (Portuguese version) by the Rasch Rating Scale model. Psicologia: Reflexão e Crítica, 26(2), 305-310. https://doi.org/10.1590/S0102-79722013000200010
Ricci, L. A., & Hodapp, R. M. (2003). Fathers of children with Down's syndrome versus other types of intellectual disability: perceptions, stress and involvement. Journal of intellectual disability research : JIDR, 47(Pt 4-5), 273–284. https://doi.org/10.1046/j.1365-2788.2003.00489.x
Roach, M. A., Orsmond, G. I., & Barratt, M. S. (1999). Mothers and fathers of children with Down syndrome: parental stress and involvement in childcare. American journal of mental retardation : AJMR, 104(5), 422–436. https://doi.org/10.1352/0895-8017(1999)104<0422:MAFOCW>2.0.CO;2
Rossetti, M. O., Ehlers, D. M., Guntert, I. B., Leme, I. F. A. S., et al. (2008) Lipp's inventory of symptoms os stress for adults (ISSL) in federal civil servants of São Paulo. Revista Brasileira de Terapias Cognitivas 4, 108-120. Disponível em: <http://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S1808-56872008000200008&lng=pt&nrm=iso>. ISSN 1808-5687
Sanders, J. L. & Morgan, S. B. (1997). Family Stress and Adjustment as Perceived by Parents of Children with Autism or Down Syndrome: Implications for Intervention, Child & Family Behavior Therapy, 19:4, 15-32, DOI: 10.1300/J019v19n04_02
Senses Dinc, G., Cop, E., Tos, T., Sari, E., & Senel, S. (2019). Mothers of 0-3-year-old children with Down syndrome: Effects on quality of life. Pediatrics international : official journal of the Japan Pediatric Society, 61(9), 865–871. https://doi.org/10.1111/ped.13936
Shapiro, J., Blacher, J. & Lopez, S. R. (1998) Maternal reactions to children with mental retardation. In J.A. Burack R.M. Hodapp & E. Zigler (Orgs.), Handbook of mental retardation and development (pp. 606-636). Cambridge: Cambridge University Press.
Startin, C. M., D'Souza, H., Ball, G., Hamburg, S., Hithersay, R., Hughes, K., Massand, E., Karmiloff-Smith, A., Thomas, M., LonDownS Consortium, & Strydom, A. (2020). Health comorbidities and cognitive abilities across the lifespan in Down syndrome. Journal of neurodevelopmental disorders, 12(1), 4. https://doi.org/10.1186/s11689-019-9306-9
Stephens, M. A. P., Townsend, A. L., Martire, L. M., & Druley, J. A. (2001). Balancing parent care with other roles: Interrole conflict of adult daughter caregivers. Journals of Gerontology - Series B Psychological Sciences and Social Sciences, 56(1), P24-P34. https://doi.org/10.1093/geronb/56.1.P24
von Elm, E., Altman, D. G., Egger, M., Pocock, S. J., Gøtzsche, P. C., Vandenbroucke, J. P., & STROBE Initiative (2008). The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. Journal of clinical epidemiology, 61(4), 344–349. https://doi.org/10.1016/j.jclinepi.2007.11.008
Wegner, W. & Pedro, E. N. R. (2010) Os múltiplos papéis sociais de mulheres cuidadoras-leigas de crianças hospitalizadas. Revista Gaúcha de Enfermagem, 31(2), 335-342. https://dx.doi.org/10.1590/S1983-14472010000200019
WHOQOL Group. The development of the World Health Organization quality of life assessment instrument (the WHOQOL). In: Orley J., KUYKEN W. (1994) Quality of life assessment: international perspectives. Heidelberg: Springer Verlag, 41-60.
Wilson H. S. (1989). Family caregiving for a relative with Alzheimer's dementia: coping with negative choices. Nursing research, 38(2), 94–98.
World Medical Association (2013). World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA 27, 2191-4. doi: 10.1001/jama.2013.281053.
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Copyright (c) 2020 Marina Fuzette Amaral, Karina Helga Turcio de Carvalho, Alessandra Marcondes Aranega, Caio Vinicius Lourenço Debortoli, Gabriela Baesteiro Baldessim, Vitor Hugo Gonçalves Sampaio, Daniela Atili Brandini
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