Qualidade de vida e sintomatologia psicopatológica em pais de crianças com diagnóstico de deficiência/anomalia congénita: A importância das características de resiliência

Sara Albuquerque, Marco Pereira, Ana Fonseca, Maria Cristina Canavarro

Abstract


O objetivo do presente estudo consistiu em avaliar a adaptacao parental, em termos de sintomatologia psicopatologica e qualidade de vida (QdV), bem como avaliar a influencia das caracteristicas de resiliencia parental na sua adaptacao, bem como na adaptacao do(a) parceiro(a). A amostra foi constituida por 90 participantes (45 casais), pais de criancas com um diagnostico de deficiencia/AC. O protocolo de avaliacao incluiu a Escala de Resiliencia para Adultos (ERA), o Inventario de Sintomas Psicopatologicos (BSI-18) e o instrumento de avaliacao de QdV da Organizacao Mundial de Saude, WHOQOL-Bref. Os resultados mostraram que as maes apresentaram valores mais elevados na dimensao ansiedade (p<.01), no indice geral de gravidade (p<.01) e pior QdV psicologica (p<.05). As maes apresentaram valores mais elevados de resiliencia, em particular de coesao familiar (p<.05). Em ambos os pais, a resiliencia mostrou-se associada a menor sintomatologia psicopatologica e a resultados mais elevados de QdV. A resiliencia materna nao se mostrou significativamente associada a adaptacao paterna mas, constatou-se que niveis elevados de resiliencia paterna se associaram a menor sintomatologia psicopatologica e melhor QdV materna. Os resultados deste estudo evidenciam o papel protetor da resiliencia na adaptacao parental ao diagnostico de anomalia congenita da crianca. Adicionalmente, estes resultados enfatizam a necessidade de avaliar e promover os recursos parentais. Por fim, ressalta-se a necessidade de avaliacao do casal como unidade de analise e os potenciais efeitos cruzados no desenho de intervencoes terapeuticas, reforcando-se o papel da relacao conjugal e do contexto interpessoal em que esta problematica ocorre.

Keywords


Deficiência; Qualidade de vida; Sintomatologia psicopatológica; Resiliência

References


Baker, B. L., Blacher, J., & Olsson, M. B. (2005). Preschool children with and without developmental delay: Behaviour problems, parents’ optimism and well-being. Journal of Intellectual Disability Research, 49(8), 575-590.

Baker-Ericzen, M. J., Brookman-Frazee, L, & Stahmer, L. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research & Practice for Persons with Severe Disabilities, 30(4), 194-204.

Bailey, D. B., Golden, R. N., Roberts, J., & Ford, A. (2007). Maternal depression and developmental disability: Research critique. Mental Retardation and Developmental Disabilities Research Review, 13(4), 321-329.

Batshaw, M. L., & Perret, Y. M. (1990). Criança com deficiência. São Paulo: Maltese.

Beckman, P. J. (1991). Comparison of mothers' and fathers' perceptions of the effect of young children with and without disabilities. American Journal on Mental Retardation, 95(5), 585-595.

Bianchini, D. C., & Dell’Aglio, D. D. (2006). Processos de resiliência no contexto de hospitalização: Um estudo de caso. Paidéia, 16(35), 427-436.

Brandon, P. (2007). Time away from ‘‘smelling the roses’’: Where do mothers raising children with disabilities find time to work? Social Science and Medicine, 65(4), 667-679.

Brosig, C. L., Whitstone, B. N., Frommelt, M. A., Frisbee, S. J., & Leuthner, S. (2007). Psychological distress in parents of children with severe congenital heart disease: The impact of prenatal versus postnatal diagnosis. Journal of Perinatology, 27(11), 687-692.

Campbell, L., & Kashy, D. A. (2002). Estimating actor, partner, and interaction effects for dyadic data using PROC MIXED and HLM: A user-friendly guide. Personal Relationships, 9(3), 327-342.

Cohen, J. (1992). A power prime. Psychological Bulletin, 112(1), 155-159.

Derogatis, L. R. (2000). The brief symptom inventory-18 (BSI-18): Administration, scoring, and procedures manual. Minneapolis, MS: National Computer Systems.

Emerson, E. (2003). Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self-assessed social and psychological impact of the child's difficulties. Journal of Intellectual Disability Research, 47(4/5), 385-399.

EUROCAT (2009). Special Report. The Status of Health in the European Union: Congenital Malformations. EUROCAT Central Registry, University of Ulster.

Failla, S., & Jones, C. (1991). Families of children with developmental disabilities: An examination of family hardiness. Research in Nursing and Health, 14(1), 41-50.

Fonseca, A., Nazaré, B., & Canavarro, M. C. (2012). Parental psychological distress and quality of life after a pre- or postnatal diagnosis of congenital anomaly: A controlled comparison study with parents of healthy babies. Disability and Health Journal, 5, 67 - 74.

Friborg, O., Hjemdal, O., Rosenvinge, J. H., & Martinussen, M. (2003). A new rating scale for adult resilience: What are the central protective resources behind healthy adjustment? International Journal of Methods in Psychiatric Research, 12(2), 65-76.

Friborg, O., Barlaug, D., Martinussen, M., Rosenvinge, J. H., & Hjemdal O. (2005). Resilience in relation to personality and intelligence. International Journal of Methods in Psychiatric Research, 14(1), 29-42

Gerstein, E. D., Crnic, K. A., Blacher, J., & Baker, B. L. (2009). Resilience and the course of daily parenting stress in families of young children with intellectual disabilities. Journal of Intellectual Disability Research, 53(12), 981-997.

Glidden, L. M., Billings, F. J., & Jobe, B. M. (2006). Personality, coping style and well-being of parents rearing children with developmental disabilities. Journal of Intellectual Disability Research, 50(12), 949-962.

Glidden, L. M., & Schoolcraft, S. A. (2003). Depression: Its trajectory and correlates in mothers rearing children with intellectual disability. Journal of Intellectual Disability Research, 47(4/5), 250-263.

Greeff, A. P., & Aspeling, E. (2007). Resiliency in South-African and Belgian single-parent families. Acta Academia, 39(2), 139-157.

Gupta, A., & Singhal, N. (2004). Positive perceptions in parents of children with disabilities. Asia Pacific Disability Rehabilitation Journal, 15(1), 22-35.

Hassall, R. & Rose, J. (2005). Parental cognitions and adaptation to the demands of caring for a child with an intellectual disability: A review of the literature and implications for clinical interventions. Behavioural and Cognitive Psychotherapy, 33(1), 71-88.

Hassall, R., Rose, J., & McDonald, J. (2005). Parenting stress in mothers of children with an intellectual disability: The effects of parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 49(6), 405-418.

Hastings, R. P., Allen, R., McDermott, K., & Still, D. (2002). Factors related to positive perceptions in mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15(3), 269‐275.

Hastings, R. P., & Brown T. (2002). Behavior problems of children with autism, parental self-efficacy, and mental health. American Journal on Mental Retardation, 107(3), 222-232.

Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D., & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9(4), 377-391.

Hunfeld, J. A., Tempels, A., Passchier, J., Hazebroek, F. W., & Tibboel, D. (1999). Parental burden and grief one year after the birth of a child with a congenital anomaly. Journal of Pediatric Psychology, 24(6), 515-520.

Katz-Wise, S., Priess, H., & Hyde, J. (2010). Gender-role attitudes and behavior across the transition to parenthood. Developmental Psychology, 46(1), 18-28.

Lawoko, S., & Soares, J. J. (2006). Psychosocial morbidity among parents of children with congenital heart disease: A prospective longitudinal study. Heart and Lung: Journal of Acute and Critical Care, 35(5), 301-314.

Li-Tsang, C. W. P., Yau, M. K. S., & Yuen, H. K. (2001). Success in parenting children with developmental disabilities: Some characteristics, attitudes and adaptive coping skills. The British Journal of Developmental Disabilities, 47(2), 61-71.

Locock, L., & Alexander, J. (2006). Just a bystander? Men’s place in the process of fetal screening and diagnosis. Social Science & Medicine, 62, 1349–1359.

Moes, D., Koegel, R. L., Schreibman, L., & Loos, L. M. (1992). Stress profiles for mothers and fathers of children with autism. Psychological Reports, 71, 1272-1274.

Mugno, D., Ruta, L., D’Arrigo, V. G., & Mazzone, L. (2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5, 22.

Murray, C. Kelley-Soderholm, E., & Murray, T. (2007). Strengths, challenges, and relational processes in families of children with congenital upper limb differences. Families, Systems, & Health, 20(3), 276-292.

Oelofsen, N., & Richardson, P. (2006). Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal of Intellectual & Developmental Disability, 31(1), 1-12.

Olsson, M. B., & Hwang, C. P. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research, 45(6), 535-543.

Olsson M. B., & Hwang C. P. (2002). Sense of coherence in parents of children with different developmental disabilities. Journal of Intellectual Disability Research, 46(7), 548-59.

Patterson, J. M. (2002). Integrating family resilience and family stress theory. Journal of Marriage and Family, 64(2), 349-360.

Pelchat, D., Ricard, N., Bouchard, J. M., Perrault, M., Saucier, J.‐F., Berthiaume, M., & Bisson, J. (1999). Adaptation of parents in relation to their 6‐month‐old infant’s type of disability. Child: Care, Health & Development, 25(4), 377‐397.

Regateiro F. (2007). Manual de Genética Médica. Coimbra: Imprensa da Universidade de Coimbra.

Rutter, M. (2007). Resilience, competence, and coping. Child Abuse & Neglect, 31(3), 205-209.

Saloviita, T., Italinna, M., & Leinonen, E. (2003). Explaining the parental stress of fathers and mothers caring for a child with intellectual disability: A double ABCX model. Journal of Intellectual Disability Research, 47(4/5), 300-312.

Schaap, I. A., Galen, F. M., Ruijter, A. M., & Smeets, E. C. (2009). Resilience, the article: The balance between awareness and fear. Retirado de www.impactkenniscentrum.nl/download/file1163776605.pdf

Seligman, M., & Darling, R. B. (2007). Ordinary families, special children: A systems approach to childhood disability. New York: The Guilford Press.

Simmerman, S., Blacher, J., & Baker, B. (2001). Fathers’ and mothers’ perceptions of father involvement in families with young children with a disability. Journal of Intellectual & Developmental Disability, 26(4), 325-338.

Singer, G. H. (2006). Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal on Mental Retardation, 111(3), 155-169.

Smith, L. E., Seltzer, M. M., Tager‐Flusberg, H., Greenberg, J. S., & Carter, A. S. (2008). A comparative analysis of toddlers and mothers of adolescents with ASD. Journal of Autism Developmental Disorders, 38(5), 876‐889.

Summers, J. A., Behr, S. K., & Turnbull, A. P. (1989). Positive adaptation and coping strengths of families who have children with disabilities. In G. H. S. Singer & L. K. Irvin (Eds.), Support for caregiving families (pp. 27-40). Baltimore: Brookes.

Taanila, A., Jarvelin, M. R., & Kokkonen, J. (1999). Cohesion and parents’ social relations in families with a child with disability or chronic illness. International Journal of Rehabilitation Research, 22(2), 101-109.

Taanila, A., Syrjälä, L., Kokkonen, J., & Järvelin, M.R. (2002). Coping of parents with physically and/or intellectually disabled children. Child Care, Health and Development, 28(1), 73-86.

Vaishnavi, S., Connor, K., & Davidson, J. R. (2007). An abbreviated version of the Connor-Davidson Resilience Scale (CDRISC), the CD-RISC2: Psychometric properties and applications in psychopharmacological trials. Psychiatry Research, 152(2-3), 293-297.

Vaz Serra, A., Canavarro, M. C., Simões, M., Pereira, M., Gameiro, S., Quartilho, M. J., … Paredes, T. (2006). Estudos psicométricos do instrumento de avaliação da qualidade de vida da Organização Mundial de Saúde (WHOQOL-Bref) para português de Portugal. Psiquiatria Clínica, 27(1), 41-49.

Venter, N. (2009). Resilience in intimate relationships. Dissertação de doutoramento não publicada. University of South Africa, South Africa.

Walsh, F. (1996). The concept of family resilience: Crisis and challenge. Family Process, 35, 261-281.

Weinhouse, D., Weinhouse, M., & Nelson, J. G. (1992). Stress factors in families of young children with exceptional educational needs. School Psychology International, 13(1), 51-59.

WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551-558,

Winzer, M. (1990). Children with exceptionalities: A Canadian perspective (2nd ed.). Englewood Cliffs: Prentice Hall.

World Health Organization (2001). International classification of functioning, disability and health. Geneva: WHO.




DOI: https://doi.org/10.14417/ap.589

Refbacks

  • There are currently no refbacks.


Nº ERC: 107494 | ISSN (in print): 0870-8231 | ISSN (online): 1646-6020 | Copyright © ISPA - CRL, 2012 | Rua Jardim do Tabaco, 34, 1149-041 Lisboa | NIF: 501313672 | The portal and metadata are licensed under the license Creative Commons CC BY-NC