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Factores psicosociales y enfermedad crónica en la niñez

Published online by Cambridge University Press:  12 May 2020

C. Zimmermann Tansella*
Affiliation:
Departamento de Psicología Médica, Instituto de Psiquiatría, Universidad de Verona, Ospedale Policlinico, Verona, Italia
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Resumen

La enfermedad crónica en un niño requiere un ajuste organizativo y emocional acertado del niño y la familia. La manera de adaptarse del niño y la familia a la enfermedad afectará a su bienestar psicológico y a su calidad de vida. Esta revisión resume hallazgos de investigación recientes sobre la relación entre factores de enfermedad, funcionamiento individual y familiar, estrategias de afrontamiento y ajuste psicosocial. Los hallazgos se presentan dentro del marco de tres modelos teóricos complementarios: el enfoque evolutivo familiar, la tipología psicosocial de enfermedades y el modelo de proceso de estrés y afrontamiento. Estos modelos son útiles para una comprensión mejor de las complejas interacciones entre enfermedad, familia y afrontamiento, y ofrecen a los profesionales que participan en la asistencia de niños enfermos crónicos directrices para la evaluación y el desarrollo de programas de intervención. La revisión empieza examinando las repercusiones de la enfermedad crónica sobre el ajuste psicosocial del niño enfermo, sus hermanos y parientes. Luego, se discuten factores que producen estrés psicosocial y factores de riesgo desde el punto de vista de las características relacionadas con la enfermedad y con la familia. Se presentan recursos y estrategias de afrontamiento que se han mostrado relacionados con el ajuste infantil y de los padres, y por último se describen programas de intervención que tienen éxito.

Type
Artículo original
Copyright
Copyright © European Psychiatric Association 1996

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References

Bibliografia

Beresford, BAResources and strategies: how parents cope with the care of a disabled child. J Child Psychol Psychiatry 1994; 171209.CrossRefGoogle ScholarPubMed
Bregman, AMLiving with Progressive childhood illness: parental management of neuromuscular disease. Soc Work Health Care 1980; 5: 387408.CrossRefGoogle ScholarPubMed
Breslau, NPsychiatric disorder in children with physical disability. J Am Academy Child Psychiatry 1985; 24: 8794.CrossRefGoogle Scholar
Bristol, MMFamily resources and successful adaptation to austistic children. In: Schopler, ES and Meisbov, G eds. The Effect of Autism on the Family. New York: Plenum Press, 1984.Google Scholar
Brown, AHepple, SHow Parents Cope. Hertford: Barnardo’s, 1989.Google Scholar
Bush, PPain in children: a review of the literature from a developmental perspective. Psychol Health 1987; 1: 215–36.CrossRefGoogle Scholar
Byrne, EACunningham, CCSloper, PFamilies and their Children with Down 's Syndrome: One Feature in Common. Routledge, London: 1988.CrossRefGoogle Scholar
Cadman, DBoyle, MSzatmari, POford, DRChronic illness, disability and mental and social well-being: findings of the Ontorio Child Health Study. Pediatrics 1987; 79: 805–13.Google Scholar
Caplan, GKillilea, MSupport Systems and Mutual Help. New York: Grune Stratton, 1976.Google Scholar
Drotar, DBush, MMental issues and Services. In: Hobbs, N and Perrin, JM eds. Issues in the Care of Children with Chronic Illness. San Francisco: Jossey-Bass, 1985.Google Scholar
Drotar, DCrawford, PPsychological adaptation od siblings of chronically ill shildren: research and practice implications. Developm Behav Pediatrics 1985; 6: 355–62.Google Scholar
Duvall, EMarriage and Family Development. New York: JP Lippincott, 1977.Google Scholar
Dym, BThe cybernetics of physical illness. Fam Proc 1987; 26: 3548.CrossRefGoogle ScholarPubMed
Dyson, LLAdjustment of siblings of handicapped children; a comparison. J Pediatr Psychol 1989; 14: 21529.CrossRefGoogle ScholarPubMed
Eiser, CPsychological effects of chronic disease. J Child Psychol Psychiatry 1990; 31: 8598.CrossRefGoogle ScholarPubMed
Eiser, CThe Eleventh Jack Tizard Memorial Lecture. Making sense of chronic disease. J Child Psychol Psychiat 1994; 35: 1373–90.CrossRefGoogle ScholarPubMed
Fewell, RRSupport from religious organisations and personal beliefs. In: Fewell, RRFewell, RR eds. Families of Handicapped Children. Needs and Supports across the Life Span. Austin: Pro-Ed, 1986.Google Scholar
Folkman, SLazarus, RSManual for the Ways of Coping Questionnaire. Palo Alto: Counselling Psychologist Press, 1988.Google Scholar
Frey, KSGreenberg, MTFewell, RStress and coping among parents of handicapped children: a multidimensional approach. Am JMent Retara 1989; 94: 240–9.Google ScholarPubMed
Goldberg, RJTull, RMThe Psychosocial Dimensions of Cancer. New York: The Free Press, 1983.Google Scholar
Gammon, EARose, SDThe coping skills training program for parents of children with developmental disabilities: an experimental evaluation. Res Soc Work Practice 1991; 1: 244–56.CrossRefGoogle Scholar
Hauser, SJacobson, AWertlieb, DThe contribution of family environment to perceived competence and illness adjustment in diabetic and acutely ill adolescents. Frarti Relations 1985; 34: 99108.CrossRefGoogle Scholar
Hobbs, NPerrin, JMIssues in the Cure of Children with Chronic Illness. San Francisco: Jossey-Bass, 1985.Google Scholar
Howe, GWFeinstein, CReiss, DMolock, SBerger, KAdolescent adjustment to chronic physical disorders - I. Comparing neurological and non-neurological conditions. J Child Psychol Psychiatry 1993; 34: 1153–71.CrossRefGoogle ScholarPubMed
Hulstijn-Dirkmaat, J.Continous ambulatory peritoneal dialysis in children and family stress. Int J Adolesc Med Health 1989; 4: 1925.CrossRefGoogle Scholar
Kazak, AEFamilies with physically handicapped children: social ecology and family systems. Fam Proc 1986; 26: 265–81.CrossRefGoogle Scholar
Kazak, AEFamilies with disabled children: stress and social networks in three samples. J Abn Child Psychol 1987; 15: 137–46.CrossRefGoogle ScholarPubMed
Kazak, AEMarvin, RSDifferences, difficulties and adaptation: stress and social networks in families with a handicapped child. Fam Relations 1984; 33: 6777.CrossRefGoogle Scholar
Kazak, AEWilcox, BLThe structure and function of social support networks in families with handicapped children. Am J Comm Psychol 1984; 12: 645–61.CrossRefGoogle ScholarPubMed
Kirkham, MATwo year follow-up of skills training with mothers of children with disabilities. Am J Ment Retara 1993; 97: 509–20.Google ScholarPubMed
Kirkham, MASchilling, RFLife skills training with mothers of handicapped children. J Soc Service Res 1990; 13: 6777.CrossRefGoogle Scholar
Koocher, GO’Malley, JThe Damocles Syndrome: Psychological Consequences o f Surviving Childhood Cancer. New York: McGraw-Hill, 1981.Google Scholar
Kovacs, MIyengar, SGoldston, DObrosky, DSPsychological functioning among mothers of children with insulin-dependent diabetes mellitus: a longitudinal study. J Consult Clin Psychol 1990; 58: 189–95.CrossRefGoogle ScholarPubMed
Lavigne, JVRyan, MPsychological adjustment of siblings of children with chronic illness. Pediatrics 1979; 63: 616–26.Google ScholarPubMed
Lazarus, RSFolkman, SStress, Appraisal and Coping. New York: Springer, 1984.Google Scholar
Lobato, DBarbour, LHall, LJMiller, CTPsychosocial characteristics of preschool siblings of handicapped and non handicapped children. J Abn Child Psychol 1987; 15: 329–38.CrossRefGoogle Scholar
Mc Goldrick, MCarter, EAThe family life cycle. In: Walsh, F ed. Normal Family Processes. New York: Guilford Press, 1982.Google Scholar
Miller, ALGordon, RMDaniele, RJKDiller, LStress, appraisal and coping in mothers of disabled and non disabled children. J Ped Psychol 1992; 17: 587605.CrossRefGoogle Scholar
Moos, RCoping with Physical Illnes. New York: Plenum Press, 1984.CrossRefGoogle Scholar
Howe, GWFeinstein, CReiss, DMolock, SBerger, KAdolescent adjustment to chronic physical disorders - I. Comparing neurological and non-neurological conditions. J Child Psych Psychol 1993; 34: 1153–71.CrossRefGoogle ScholarPubMed
Olson, DHSprenkle, DHRussel, CCircumplex model of marital and family systems. Fam Proc 1983; 22: 6983.CrossRefGoogle ScholarPubMed
Penn, PCoalitions and binding interactions in families with chronic illnes. Fam Systems Med 1983; 1: 1625.CrossRefGoogle Scholar
Perrin, ECAyoub, CCWillett, JBIn the eyes of the beholder: family and maternal influences on perceptions of adjustment of children with chronic illness. Developm Behav Pediatrics 1993; 14: 94105.Google ScholarPubMed
Pless, JBDouglas, JWBChronic illness in childhood: part I epidemiological and clinical characteristics. Pediatrics 1971; 47: 405–14.Google Scholar
Quine, LPahl, JStress and coping in mothers caring for a child with severe learning difficulties: a test of Lazarus’ transaction model of coping. J Comm Applied Soc Psychol 1991; 1: 5770.CrossRefGoogle Scholar
Reiss, DThe Family Construction of Reality. Cambridge: Harvard Press University, 1981.Google Scholar
Reiss, DOlivieri, MEFamily paradigm and family coping: a proposal for linking the family's intrinsic capacities to its response to stress. Fam Relations 1980; 29: 431–44.CrossRefGoogle Scholar
Rolland, JSToward a psychosocial typology of chronic and life-threatening illness. Fam Systems Med 1984; 2: 245–62.CrossRefGoogle Scholar
Rolland, JSChronic illness and the life eyele: a conceptual framework. Fam Proc 1987; 26: 203–21.CrossRefGoogle ScholarPubMed
Rutter, MTizard, JWhitmore, KEducation, Health and Behaviour. London: Longman, 1970.Google Scholar
Sabbeth, BFLeventhal, JMMarital adjustment to chronic illnees: a critique of the literature. Pediatrics 1984; 73: 762–8.Google ScholarPubMed
Sattherwhite, BBImpact of chronic illness on child and family: an overview on five surveys with implication for management. Int J Rehabil Res 1978; 1: 717.CrossRefGoogle Scholar
Scheier, MFCarver, CSOptimism, coping and health: assessment and implications of generalized outeome expectancies. Health Psychol 1984; 4: 219–45.CrossRefGoogle Scholar
Sloper, PTurner, SParental and professional views on the needs of families with a child with svere physical disability. Couns Psychol Quarterly 1991; 4: 323–30.CrossRefGoogle Scholar
Sloper, PTurner, SRisk and resistance factors in the adaptation of parents with children with severe physical disability. J Child Psychol Psychiatry 1993; 34: 167–88.CrossRefGoogle ScholarPubMed
Sloper, PKnussen, Cturner, SCunningham, CFactors related to stress and satisfaction with life in families of children with Down's syndrome. J Child Psychol Psychiatry 1991; 32: 655–76.CrossRefGoogle ScholarPubMed
Stein, RFKJessop, DJA non-categorical approach to chronic childhood illness. Public Health Rep 1982; 97: 354–62.Google Scholar
Thompson, RJZeman, ILFanurik, DSirotkin-Roses, MThe role of parent stress and coping and family functioning in parent and child adjustment to Duchenne Muscular Dystrophy. J Clin Psychol 1992; 48: 1119.3.0.CO;2-4>CrossRefGoogle ScholarPubMed
Tumbull, APBrotherson, MJSummers, JAThe impact of deinstitutionalization on families: a family systems approach. In: Bruinicks, RH ed. Living and Learning in the Least Restrictive Environment. Baltimore: Paul H Brokks, 1985.Google Scholar
Varni, JWBabani, LWallander, JLRoe, TFSocial support and sefl-esteem effects on psychological adjustment in children and adolescents with insulin-dependent diabetes mellitus. Child Fam Behav Therapy 1989; 11: 117.CrossRefGoogle Scholar
Wallander, JLVami, JWSocial support and adjustment in chronically ill and handicapped children. Am J Commun Psychol 1989; 17: 185201.CrossRefGoogle ScholarPubMed
Wallander, JLVarni, JWBabani, LBarnis, HTWilcox, KTFamily resources as resistance factors for psychological maladjustment in chronically ill and handicapped children. J Ped Psychol 1989a; 14: 157–73.CrossRefGoogle Scholar
Wallander, JLVami, JWBabani, LBanis, HTDeHaan, CBWilcox, KTDisability Parameters, chronic strain and adaptation of physical handicapped children and their mothers. J Ped Psychol 1989b; 14: 2342.CrossRefGoogle Scholar
Zeitlin, SRosenblatt, WPWilkinson, GGFamily stress: a coping model for intervention. BC J Special Education 1986; 10: 231–42.Google Scholar