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Análise Psicológica

versão impressa ISSN 0870-8231

Aná. Psicológica v.16 n.1 Lisboa mar. 1998

 

A família da criança com doença crónica: Abordagem de algumas características

 

Salomé Vieira Santos (*)

 

RESUMO

Neste artigo a autora apresenta uma revisão de alguns estudos desenvolvidos no âmbito da investigação que aborda a família da criança com doença crónica. Dedica especial destaque a aspectos relativos à influência familiar no ajustamento da criança, e ao ajustamento psicológico dos pais e irmãos.

Palavras-chave: Doença crónica, crianças, família.

 

ABSTRACT

In this paper the author presents a revision of studies that have been developed in the research area concerning the family of children with chronic illness. The author emphasizes the aspects related with the familiar influence on child adjustment and the psychological adjustment of parents and siblings.

Key words: Chronic illness, children, family.

 

 

Texto completo disponível apenas em PDF.

Full text only available in PDF format.

 

 

REFERÊNCIAS BIBLIOGRÁFICAS

Barakat, L. P., & Linney, J. A. (1992). Children with physical handicaps and their mothers: The interrelation of social support, maternal adjustment, and children adjustment. Journal of Pediatric Psychology, 17, 725-739.

        [ Links ]

Bennett, D. S. (1994). Depression among children with chronic medical problems: A meta-analysis. Journal of Pediatric Psychology, 19, 149-169.

Breslau, N., Staruch, K., & Mortimer, F. (1982). Psychological distress in mothers of disabled children. American Journal of Diseases of Childhood, 136, 682-686.

Bristol, M. M., Gallagher, J. J., & Schopler, E. (1988). Mothers and fathers of young developmentally disabled and nondisabled boys: Adaptation and spousal support. Developmental Psychology, 24, 441-451.

Cadman, D., Rosenbaum, P., Boyle, M., & Offord, D. R. (1991). Children with chronic illness: Familyand parent demographic characteristics and psychosocial adjustment. Pediatrics, 87, 884-889.

Canning, E. H., Hanser, S. B., Shade, K. A., & Boyce, W. T. (1992). Mental disorders in chronically illchildren: Parent-child discrepancy and physician identification. Pediatrics, 90, 692-696.

Canning, R. D., Harris, E. S., & Kelleher, K. J. (1996). Factors predicting distress among caregivers to children with chronic medical conditions. Journal of Pediatric Psychology, 21, 735-749.

Chesler, M. A., & Barbarin, O. A. (1987). Childhood cancer and the family. New York: Brunner/Mazel.

Cummings, S. (1976). The impact of the child´s deficiency on the father. A study of fathers of mentally retarded and of chronically ill children. American Journal of Orthopsychiatry, 46, 246-255.

Dahlquist, L. M., Czyzewski, D. I., Copeland, K. G., Jones, C. L., Taub, E., & Vaughan, J. K. (1993). Parents of children newly diagnosed with cancer: Anxiety, coping, and marital distress. Journal of Pediatric Psychology, 18, 365-376.

Dahlquist, L. M., Czyzewski, D. I., & Jones, C. L. (1996). Parents of children with cancer: A longitudinal study of emotional distress, coping style, and marital adjustment two and twenty months after diagnosis. Journal of Pediatric Psychology, 21, 541-554.

Dahlquist, L. M., Power, T. G., & Carlson, L. (1995). Physician and parental behavior during invasive pediatric cancer procedures: Relationships to child behavioral distress. Journal of Pediatric Psychology, 20, 477-490.

Daniels, D., Moos, R. H., Billings, A. G., & Miller, J. J. (1987). Psychosocial risk and resistance factors among children with chronic illness, healty siblings, and healty controls. Journal of Abnormal Child Psychology, 15, 295-308.

DeMaso, D. R., Campis, L. K., Wypij, D., Bertram, S., Lipshitz, M., & Freed, M. (1991). The impact of maternal perceptions and medical severity on the adjustment of children with congenital heart disease. Journal of Pediatric Psychology, 16, 137-149.

Drotar, D. (1991). Coming of age: Critical challenges to the future development of pediatric psychology. Journal of Pediatric Psychology, 16, 1-11.

Drotar, D. (1992). Integrating theory and practice in psychological interventions with families of children with chronic illness. In T. J. Akamatsu, M. A. P. Stephens, S. E. Hobfoll, & J. H. Crowther(Eds.), Family health psychology (pp. 175-192). Washington: Hemisphere Publishing Corporation.

Drotar, D. (1994). Psychological research with pediatric conditions: If we specialize, can we generalize? Journal of Pediatric Psychology, 19, 403-414.

Earls, F. (1980. The prevalence of behavior problems in 3-year old children: Comparison of the reports of fathers and mothers. Journal of the American Academy of Child Psychiatry, 19, 439-452.

Eiser, C. (1985). The psychology of childhood illness. New York: Springer-Verlag.

Eiser, C., Havermans, T., Pancer, M., & Eiser, J. R. (1992). Adjustment to chronic disease in relation to age and gender: Mothers' and fathers' reports of their childrens' behavior. Journal of Pediatric Psychology, 17, 261-275.

Elkins, P. D., & Roberts, M. C. (1983). Psychological preparation for pediatric hospitalization. Clinical Psychology Review, 3, 275-295.

Ennett, S. T., DeVellis, B. M., Earp, J. A., Kredich, D., Warren, R. W., & Wilhelm, C. L. (1991). Disease experience and psychological adjustment in children with Juvenile Rheumatoid Arthritis: Children's versus mothers' reports. Journal of Pediatric Psychology, 16, 557-568.

Fielding, D. (1985). Chronic illness in children. In F. N. Watts (Ed.), New development in clinical psychology (pp. 33-54). Great Britain: The British Psychological Society.

Garmezy, N. (1981). Children under stress: Perspectives on antecedents and correlates of vulnerability and resistence to psychopathology. In A. I. Rabin, J. Aranoff, A. M. Barclay, & R. A. Zucker (Eds.), Further explorations in personality (pp. 196-269). New York: Wiley Interscience.

Garrison, W. T., & McQuiston, S. (1989). Chronic illness during childhood and adolescence. Psychological aspects. California: Sage Publications.

Gibson, C. H. (1986). How parents cope with a child with Cystic Fibrosis. Nursing Papers/Perspectives in Nursing, 18, 31-45.

Goldberg, S., Morris, P., Simmons, R. J., Fowler, R. S., & Levison, H. (1990). Chronic illness in infancy and parenting stress: A comparison on three groups of parents. Journal of Pediatric Psychology, 15, 347-358.

Grose, N. P., & Goodrich, T. J. (1985). Chronic illness: A systems perspective. In Grose (Ed.), Principles of family systems and family medicine (pp. 292-315). New York: Brunner/Mazel.

Gustafsson, P. A., Kjellman, N-I, Ludvigsson & Cederblad, M. (1987). Asthma and family interaction. Archives of Disease in Childhood, 62, 258-263.

Hamlett, K. W., Pellegrini, D. S., & Katz, K. S. (1992). Childhood chronic illness as a family stressor. Journal of Pediatric Psychology, 17, 33-47.

Hauser, S., Jacobson, A., Lavori, P., Wolfsdorf, J., Herskowitz, R., Milley, J., Bliss, R., Wertlieb, D., & Stein, J. (1990). Adherence among children and adolescentes with Insulin-Dependent Diabetes Mellitus over a four-year longitudinal follow-up: II. Immediate and long-term linkages with thefamily milieu. Journal of Pediatric Psychology, 15, 511-526.

Jacobson, P., Manne, S., Gorfinkle, K., Schorr, O., Rapkin, B. & Redd, W. H. (1990). Analysis of child and parent behavior during painful medical procedures. Health Psychology, 9, 599-576.

Johnson, S. B. (1985). The family and the child with chronic illness. In D. C. Turk, & R. D. Kerns (Eds.), Health, illness and families. A life-span perspective (pp. 220-254). New York: John Wiley & Sons.

Johnson, S. B. (1988). Diabetes Mellitus in childhood. In D. K. Routh (Ed.), Handbook of pediatric psychology (pp. 9-31). New York: Guilford Press.

Kazak, A. E. (1989). Families of chronically ill children: A systems and socio-ecological model of adaptation and challenge. Journal of Consulting and Clinical Psychology, 57, 25-30. Kazak, A. E., & Nachman, G. S. (1991). Family research on childhood chronic illness: Pediatric oncology as an example. Journal of Family Psychology, 4, 462-483.

Kliewer, W., & Lewis, H. (1995). Family influences on coping processes in children and adolescents with Sickle Cell Disease. Journal of Pediatric Psychology, 20, 511-525.

Koocher, G. P., & MacDonald, B. L. (1992). Preventive intervention and family coping with a child's life-threatening or terminal illness. In T. J. Akamatsu, M. A. P. Stephens, S. E. Hobfoll & J. H. Crowther(Eds.), Family health psychology (pp. 67-86). Washington: Hemisphere Publishing Corporation.

Kovacs, M., Iyengar, S., Goldston, D., Obrosky, D. S, Stewart, J., & Marsh, J. (1990). Psychological functioning among mothers of children with Insulin-Dependent Diabetes Mellitus: A longitudinal study. Journal of Consulting and Clinical Psychology, 58, 189-195.

Kupst, M. J., Natta, M. B., Richardson, C. C., Schulman, J. L., Lavigne, J. V., & Das, L. (1995). Family coping with pediatric Leukemia: Ten years after treatment. Journal of Pediatric Psychology, 20, 601-617.

Kupst, M., Schulman, J., Honig, G., Maurer, H., Morgan, E., & Fochtman, D. (1982). Family coping with childhood Leukemia: One year after diagnosis. Journal of Pediatric Psychology, 7, 157-174.

La Greca, A. M. (1988). Adherence to prescribed medical regimens. In D. K. Routh (Ed.), Handbook of pediatric psychology (pp. 299-320). New York: Guilford Press.

La Greca, A. M., & Varni, J. W. (1993). Interventions in pediatric psychology: A look toward the future. Journal of Pediatric Psychology, 18, 667-679.

Lara, E. M. (1992). Fibrose Quística: Alterações psicopatológicas e consequências familiares. Provas de Doutoramento apresentadas à Faculdade de Medicina da Universidade de Lisboa.

Lemanek, K. L. (1994). Research on pediatric chronic illness: New directions and recurrent confounds. Journal of Pediatric Psychology, 19, 143-147.

Lewis, B. L., & Khaw, K.-T. (1982). Family functioning as mediating variable affecting psychosocial adjustment of children with Cystic Fibrosis. The Journal of Pediatrics, 101, 636-640.

Lizasoain, O., & Polaino, A. (1995). Reduction of anxiety in pediatric patients: Effects of a psychopedagogical intervention programme. Patient Education and Counseling, 25, 17-22.

Lusting, J. L., Ireys, H. T., Sills, E. M., & Walsh, B. B. (1996). Mental Health of mothers of children with Juvenile Rheumatoid Arthritis: Appraisal as a mediator. Journal of Pediatric Psychology, 21, 719-733.

MacLean, W. E., Perrin, J. M., Gortmaker, S., & Pierre, C. B. (1992). Psychological adjustment of childrenwith asthma: Effects of illness severity and recent stressful life events. Journal of Pediatric Psychology, 17, 159-171.

Manne, S. L., Bakeman, R., Jacobsen, P. B., Gorfinkle, K., Bernstein, D., & Redd, W. H. (1992). Adult-child interaction during invasive medical procedures. Health Psychology, 11, 241-249.

Manne, S. L., Jacobsen, P. B., Gorfinkle, K., Gerstein, F., & Redd, W. H. (1993). Treatment adherence difficulties among children with cancer: The role of parenting style. Journal of Pediatric Psychology, 17, 159-171.

Manne, S. L., Lesanics, D., Meyers, P., Wollner, N., Steinherz, P., & Redd, W. (1995). Predictors of depressive symptomatology among parents of newly diagnosed children with cancer. Journal of Pediatric Psychology, 20, 491-510.

Miller, A. C., Gordon, R. M., Daniele, R. J., & Diller, L. (1992). Stress, appraisal, and coping in mothersof disabled and nondisabled children. Journal of Pediatric Psychology, 17, 587-605.

Mrazek, D. A. (1986). Paediatric hospitalization: Understanding the stress from a developmental perspective. In M. J. Christie, & P. G. Mellett (Eds.), The psychosomatic approach: Contemporary practice of whole-person care (pp. 91-111). New York: John Wiley & Sons.

Mulhern, R. K., Fairclough, D. L., Smith, B., & Douglas, S. M. (1992). Maternal depression, assessment methods, and physical symptoms affect estimates of depressive symptomatology among children with cancer. Journal of Pediatric Psychology, 17, 313-326.

Mullins, L. L., Chaney, J. M., Hartman, V. L., Olson, R. A., Youll, L. K., Reyes, A., & Blackett, P. (1995). Child and maternal adaptation to Cystic Fibrosis and Insulin-Dependent Diabetes Mellitus: Differential patterns across disease states. Journal of Pediatric Psychology, 20, 173-186.

Mullins, L. L., Olson, R. A., Reyes, S., Bernandy, N., Huszti, H. C., & Volk, R. J. (1991). Risk and resistance factors in the adaptation of mothers of children with Cystic Fibrosis. Journal of Pediatric Psychology, 16, 701-715.

Noll, R. B., Yosua, L. A., Vannatta, K., Kalinyak, K., Bukowski, W. M., & Davies, W. H. (1995). Social competence of siblings of children with Sickle Cell Anemia. Journal of Pediatric Psychology, 20, 165-172.

Northam, E., Anderson, P., Adler, R., Werther, G., & Warne, G. (1996). Psychosocial and family functioning in children with Insulin-Dependent Diabetes at diagnosis and one year later. Journal of Pediatric Psychology, 21, 699-717.

Overstreet, S., Goins, J., Chen, R. S., Holmes, C., Greer, T., Dunlap, W. P., & Frentz, J. (1995). Family environment and the interrelation of family structure, child behavior, and metabolic control for children with Diabetes. Journal of Pediatric Psychology, 20, 435-447.

Parra, M. L. V., Cortazar, S. D., & Covarrubias-Espi-noza, G. (1983). The adaptative pattern of families with a leukemic child. Family Systems Medicine, 1, 30-35.

Peterson, L. J., & Mori, L. (1988). Preparation for hospitalization. In D. K. Routh (Ed.), Handbook of pediatric psychology (pp. 460-491). New York: Guilford Press.

Pless, I., Roghmann, K., & Haggerty, R. (1972). Chronic illness, family functioning and psychological adjustment: A model for the allocation of prevention mental health services. International Journal of Epidemiology, 1, 271-277.

Pruitt, S. D., & Elliott, C. H. (1992). Pediatric psychology: Current issues and developments. In C. E. Walker, & M. C. Roberts (Eds.), Handbook of clinical child psychology (pp. 859-872). New York: John Wiley & Sons.

Quittner, A. L., DiGirolamo, A. M., Michel, M., & Eigen, H. (1992). Parental response to Cystic Fibrosis: A contextual analysis of the diagnostic phase. Journal of Pediatric Psychology, 17, 683-704.

Roberts, M. C. (1986). Pediatric psychology. Psychological interventions and strategies for pediatric problems. New York: Pergamon Press.

Roberts, M. C., Maddux, J. E., Wurtele, S. K., & Wright, L. (1982). Pediatric psychology. Health Care Psychology for children. In T. Millon, C. Green & R. Meagher (Eds.), Handbook of clinical health psychology (pp. 191-226). New York: Plenum Press.

Roberts, M. C., & Wallander, J. L. (1992). Family issues in pediatric psychology: An overview. In M. C. Roberts & J. L. Wallander (Eds.), Family health psychology (pp. 1-24). Hillsdale, N. J.: Lawrence Erlbaum Associates, Inc.

Rutter, M. (1985). Family and school influences on behavioral development. Journal of Child Psychology and Psychiatry, 26, 349-368.

Santos, S. V. ( 1994). Características do stress em pais de crianças com doenças crónicas e em pais de crianças com problemática emocional. Análise Psicológica, 12 ( 2-3), 301-313.

Sargent, J. R., Sahler, O. J., Roghmann, K. J., Mulhern, R. K., Barbarian, O. A., Carpenter, P. J., Copeland, D. R., Dolgin, M. J., & Zeltzer, L. K. (1995). Sibling adaptation to childhood cancer collaborative study: Siblings' perceptions of the cancer experience. Journal of Pediatric Psychology, 20, 151-164.

Siefert, K., Wittmann, D., Farquar, S., & Talsma, F. (1992). Similarities and differences between children with asthma and children with cancer: Implications for preventive intervention. The Journal of Primary Prevention, 13, 149-159.

Siegel, L. J., & Hudson, B. O. (1992). Hospitalization and medical care of children. In C. E. Walker, & M. C. Roberts (Eds.), Handbook of clinical child psychology (pp. 845-858). New York: John Wiley & Sons.

Sigelman, C. K., Mukai, T., Woods, T., & Alfeld, C. (1995). Parents' contributions to children's knowledge attitudes regarding AIDS: Another look. Journal of Pediatric Psychology, 20, 61-77.

Silver, E. J., Stein, R. E., & Dadds, M. R. (1996). Moderating effects of family structure on the relationship between physical and mental health in urban children with chronic illness. Journal of Pediatric Psychology, 21, 43-56.

Speechley, K. N., & Noh, S. (1992). Surviving childhood cancer, social support, and parents' psychological adjustment. Journal of Pediatric Psychology, 17, 15-31.

Tavormina, J. B., Boll, T. J., Dunn, N. J., Luscomb, R. L., & Taylor, J. R. (1981). Psychosocial effects on parents of raising a physically handicapped child. Journal of Abnormal Child Psychology, 9, 121-131.

Thompson, R. J.,Jr., Gil, K. M., Burbach, D. J., Keith, B. R., & Kinney, T. R. (1993a). Psychologicaladjustment of mothers of children and adolescents with Sickle Cell Disease: The role of stress, coping methods, and family functioning. Journal of Pediatric Psychology, 18, 549-559.

Thompson, R. J.,Jr., Gil, K. M., Burbach, D. J., Keith, B. R., & Kinney, T. R. (1993b). Role of child andmaternal processes in the psychological adjustment of children with Sickle Cell Disease. Journal of Consulting and Clinical Psychology, 61, 468-474.

Thompson, R. J.,Jr., Gil, K. M., Gustafson, K. E., George, L. K., Keith, B. R., Spock, A., & Kinney, T. R. (1994). Stability and change in the psychological adjustment of mothers of children and adolescents with Cystic Fibrosis and Sickle Cell Disease. Journal of Pediatric Psychology, 19, 171-188.

Thompson, R. J.,Jr., Gustafson, K. E., Hamlett, K. W., & Spock, A. (1992a). Stress, coping, and family functioning in the psychological adjustment of mothers of children and adolescents with Cystic Fibrosis. Journal of Pediatric Psychology, 17, 573-585.

Thompson, R. J.,Jr., Gustafson, K. E., Hamlett, K. W., & Spock, A. (1992b). Psychological adjustment of children with Cystic Fibrosis: The role of cognitive processes and maternal adjustment. Journal of Pediatric Psychology, 17, 741-755.

Timko, C., Stovel, K. W., & Moos, R. H. (1992). Functioning among mothers and fathers of children with Juvenile Rheumatic Disease: A longitudinal study. Journal of Pediatric Psychology, 17, 705-724.

Van Dolgen-Melman, J., Pruyn, J. F., De Groot, A., Koot, H. M., Hahlen, K., & Verhulst, F. C. (1995). Late psychosocial consequences for parents of children who survived cancer. Journal of Pediatric Psychology, 20, 567-586.

Venters, M. (1981). Familial coping with chronic and severe childhood illness: The case of Cystic Fibrosis. Soc. Sci. Med., 15A, 289-297.

Walker, J. G., Manion, I. G., Cloutier, P. F., & Johnson, S. M. (1992). Measuring marital distress in coupleswith chronically ill children: The dyadic adjustment scale. Journal of Pediatric Psychology, 17, 345-357.

Walker, L. S., Van Slyke, D. A., & Newbrough, J. R. (1992). Family resources and stress: A comparison of families of children with Cystic Fibrosis, Diabetes, and Mental Retardation. Journal of Pediatric Psychology, 17, 327-343.

Wallander, J. L., Pitt, L. C., & Mellins, C. A. (1990). Child functional independence and maternal psychosocial stress as risk factors threatening adaptation in mothers of physically or sensorially handicapped children. Journal of Consulting and Clinical Psychology, 58, 818-824.

Wallander, J. L., Varni, J. W., Babani, L., DeHaan, C. B., Wilcox, K. T., & Banis, H. T. (1989). The social environment and the adaptation of mothers of physically handicapped children. Journal of Pediatric Psychology, 14, 371-387.

White, K., Kolman, M. L., Wexler, P., Polin, G., & Winter, R. J. (1984). Unstable Diabetes and unstable families: A psychosocial evaluation of diabetic children with recurrent ketoacidosis. Pediatrics, 73, 749-755.

Willis, D. J., Elliot, C. H., & Jay, S. M. (1982). Psychological effects of physical illness and its concomitants. In J. Tuma (Ed.), Handbook for the practice of pediatric psychology (pp. 28-66). New York: Wiley.

 

(*) Faculdade de Psicologia e de Ciências da Educação da Universidade de Lisboa, Alameda da Universidade, 1600 Lisboa.

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