A esperança nos pais de crianças com cancro. Uma análise fenomenológica interpretativa da relação com profissionais de saúde ¹

Maria Teresa Gouvêa Magão² & Isabel Pereira Leal³

² Enfermeira. Professora Adjunta – Escola Superior de Enfermagem de Maria Fernanda Resende

³ Psicóloga. Professora Associada – Instituto Superior de Psicologia Aplicada

 

Resumo: Este estudo explorou com pais de crianças com cancro a sua percepção de interacções com profissionais de saúde (enfermeiros e/ou médicos) que influenciaram a sua esperança. O seu objectivo foi descrever a estrutura de uma relação de esperança. Aos seis pais que se voluntariaram para ser entrevistados, foi pedida a descrição de situações de interacção com influência percebida na sua esperança. Utilizando-se o método de análise fenomenológica interpretativa (Smith, Jarman, & Osborn, 1999) salientaram-se nos resultados duas categorias: “significações da esperança” e “importância das relações”. Estas categorias permitiram aceder a uma maior compreensão da vivência da esperança nestes pais e assim identificar factores promotores e inibidores de esperança na sua relação com os profissionais de saúde. A maioria desses factores foi identificada como pares de valência oposta. Face aos resultados destacam-se três eixos de discussão: esperança e relação com o cuidado; especificidade do cuidado de enfermagem e sua relação com a esperança; o ténue equilíbrio entre a revelação de informação e a manutenção da esperança.

Palavras chave: Cancro infantil, Cuidado de enfermagem, Esperança, Factores inibidores de esperança, Factores promotores de esperança, Psico-oncologia, Relações profissional de saúde-pais.

 

 

Hope in parents of children with cancer. A phenomenological interpretative analysis of the relationship with health care professionals

Abstract: This study explored with parents of children with cancer their perception of interactions with health professionals (nurses and/or physicians) that influenced their hope. Its aim was to describe a hopefull interaction structure. To six parents, who volunteered to be interviewed, was asked to describe interaction accounts with a perceived influence in their hope. An interpretative phenomenological analysis (Smith, Jarman, & Osborn, 1999) was conducted, emerging two main themes: hope meanings and the importance of relationships. These themes enhanced the understanding of the lived experience of this parents’ hope and contributed to the identification of hope enhancing and hope inhibiting factors within their interactions with health professionals. The majority of this factors was identified as pairs of opposing valences. Three axes of discussion are presented: hope and care connection; the uniqueness of nursing care in hope enhancement; the fragile balance between information disclosure and hope maintenance.

Key words: Childhood cancer, Health professionals parents relations, Hope, Hope inhibiting factors, Hope promoting factors, Nursing care, Psycho-oncology.

 

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Referências

Barnard, D. (1995). Chronic illness and the dynamics of hoping. In S. Toombs, D. Barnard, & R. Carson (Eds.), Chronic illness: From experience to policy. Bloomington: Indiana University Press.         [ Links ]

Benner, P. (1984). From novice to expert. Excellence and power in clinical nursing practice. Menlo Park. Addison-Wesley Publishing Company.

Benner, P., & Wrubel, J. (1989). The primacy of caring. Stress and coping in health and illness. New York: Addison – Wesley Publishing Company.

Buckman, R. (1992). Doctors can improve on the way they deliver bad news, MD maintains. Canadian Medical Association Journal, 146(4), 564-566.

Carson, V., Soeken, K.L. , Shanty, J., & Terry, L. (1990). Hope and spiritual well-being: Essentials for living with Aids. Perspectives in Psychiatric care, 26(2), 28-34.

Cutcliffe, J.R. (1995). How do nurses inspire and instill hope in terminally ill HIV patients? Journal of Advanced Nursing, 22(5), 888-895.

Dias, M.R. (1997). A esmeralda perdida: A informação ao doente com cancro da mama. Lisboa: ISPA.

Dufault, K. ,& Martocchio, B. C. (1985). Hope: Its spheres and dimensions. Nursing Clinics of North America, 20(2), 379-391.

Ersek, M. (1992). The process of maintaining hope in adults undergoing bone transplantation leukemia. Oncology Nursing Forum, 19(6), 883-889.

Farran, C.J., Herth, K.A., & Popovich, J.M. (1995). Hope and hoplessness. Critical clinical constructs. Thousand Oaks: Sage Publications.

Fromm, E. (1968). The revolution of hope. New York: Harper & Row.

Haase, J.E., Britt, T., Coward, D.D., Leidy, N.K., & Penn, P.E. (1992). Simultaneous concept analysis of spiritual perspective, hope, acceptance and self-transcendence. Image: Journal of Nursing Scholarship, 24(2), 141-147.

Hall, B.A. (1990). The struggle of the diagnosed terminally ill person to maintain hope. Nursing Science quarterly, 4(3), 177-184.

Hall, B.A. (1994). Ways of maintaining hope in HIV disease. Research and Health, 17(4), 283-293.

Herth, K.A. (1989).The relationship between level of hope and level of coping response and other variables in patients with cancer. Oncology Nursing forum, 16(1), 67-72.

Herth, K.A. (1990). Fostering hope in terminally ill people. Journal of Advanced Nursing, 15, 1250-1259.

Herth, K.A. (1992). An abbreviated instrument to measure hope: Development and psychometric evaluation. Journal of Advanced Nursing, 17, 1251-1259.

Hesbeen, W. (1997a). Prendre soin à l’hôpital. Inscrire le soin infirmier dans une perspective soignante. Paris: InterEditions, Masson.

Hesbeen, W. (1997b). Science, art et beauté du soin infirmier. In Réseau PRAQSI (Ed.), IV^e Colloque du réseau multinational de recherche et de réflexion à partir de la pratique quotidienne des soins infirmiers (pp. 21-28). Lisboa: Escola Superior de Enfermagem de Francisco Gentil.

Hinds, P.S. (1984). Inducing a definition of hope through the use of grounded theory methodology. Journal of Advanced Nursing, 9, 357-362.

Hinds, P.S., & Martin, J. (1988). Hopefulness and the self-sustaining process in adolescents with cancer. Nursing Research, 37, 336-340.

Honoré, B. (1999). Être et santé. Approche ontologique du soin. Paris.

Jasper, A.M. (1994). Issues in phenomenology for researchers of nursing. Journal of Advanced Nursing, 19(2), 309-314.

Jevne, R.F. (1991). It all begins with hope: Patients, caregivers and the bereaved speak out. San Diego: Lura Media.

Jevne, R.F. (1994). The voice of hope. San Diego: Lura Media.

Kodish, E., & Post, S.G. (1995). Oncology and hope. Journal of Clinical Oncology, 13(7), 1817-1822.

Kylmä, J., & Vehvilainen-Julkunen, K. (1997). Hope in nursing research: A meta analysis of the ontological and epistemological foundations of research on hope. Journal of Advanced Nursing, 25(2), 364-371.

Marcel, G. (1962). Homoviator: Introduction to a metaphysics of hope. New York: Harper & Row.

Menninger, K. (1959). Hope. International Journal of Psychiatry, 116, 481-491.

Mickley, J.F., Soeken, K., & Belcher, A. (1992). Spiritual well-being, religiousness and hope among women with breast cancer. Image: Journal of Nursing Scholarship, 24(4), 267-272.

Miller, J.F., & Powers, M. (1988). Development of an instrument to measure hope. Nursing Research, 37(1), 6-10.

Miller, J.F. (1989). Hope – Inspiring strategies of the critically ill. Applied Nursing Research, 2(1), 23-29.

Morin, E. (1990). Science avec conscience. Paris: Editions Seuil.

Morse, J.M., & Doberneck, B. (1995). Delineating the concept of hope. Image: Journal of nursing scholarship, 27, 277-285.

Nekolaichuk, C.L., & Bruera, E. (1998). On the nature of hope in palliative care. Journal of palliative care, 14(1), 36-42.

Nowotny, M. (1989). Assessement of hope in patients with cancer: Development of an instrument. Oncology Nursing Forum, 16(1), 75-79.

Nunn, K.P. (1996). Personal hopefulness: A conceptual review of the relevance of the perceived future to psychiatry. British Journal of Medical Psychology, 69, 227-245.

Oliver, H.H.(1974). Hope and knowledge: The epistemic status of religious language. Cultural Hermeneutics, 2, 75-88.

Osborn, M., & Smith, J.A. (1998). The personal experience of chronic benign lower back pain: An interpretative phenomenological analysis. British Journal of Health Psychology, 3, 65-83.

Owen, D.C. (1989). Nurse’s perspectives on the meaning of hope in patients with cancer. Oncology Nursing Forum, 16(1), 75-79.

Parse, R.R. (1999). Hope. An international human becoming perspective. Boston: Jones and Bartlett Publishers.

Perakyla, A. (1991). Hope work in the care of seriously ill patients. Qualitative Health Research, 1(4), 407-433.

Ptacek, J.T., & Eberhardt, T.L. (1996). Breaking bad news: A review of the literature. Journal of the American Medical Association, 276(6), 499-502.

Raleigh, E. (1992). Sources of hope in chronic illness. Oncology Nursing Forum. 19(3), 443-448.

Riemen, D.J. (1986). The essential structure of a caring interaction: Doing phenomenology. In P.L. Munhal & C.J. Oiler (Eds.), Nursing research: A qualitative perspective (pp. 85-107). Norwalk: Appleton-Century-Crofts.

Rustoen, T. (1995). Hope and quality of life, two central issues for cancer patients: A theoretical analysis. Cancer Nursing, 18(5), 355-361.

Sharp, M.C., Strauss, R.P., & Lorch, S.C. (1992). Communicating medical bad news: Parents’ experiences and preferences. Journal of Pediatrics, 121, 539-546.

Smith, J.A., Jarman, M., & Osborn, M. (1999). Doing interpretative phenomenological analysis. In M. Murray & K. Chamberlain (Eds.), Qualitative health psychology. Theories and methods (pp. 216-240). London: Sage Publications.

Snyder, C.R. (1995). Conceptualizing, measuring and nurturing hope. Journal of Counseling and Development, 73, 355-360.

Snyder, C.R. (1994). The psychology of hope. New York: Free Press.

Snyder, C.R., Harris, C., Anderson, J.R. Holleran, S.A., Irving, L.M., Sigmon, S.T., Yoshinobu, L., Gibb, J., Langelle, C., & Harney, P. (1991). The will and the ways: Development and validation of an individual-differences measure of hope. Journal of Personality and Social Psychology, 60(4), 570-585.

Stotland (1969). The psychology of hope. San Francisco: Jossey-Bass.

Stoner, M., & Keampfer, S. (1985) Recalled life expectancy information, phase of illness and hope in cancer patients. Research in Nursing and Health, 8, 269-274.

Vaillot, M.C. (1970). Living and dying: Part I hope, the restoration of being. American Journal of Nursing, 70(2), 268-272.

Watson, J. (1979). Nursing: The philosophy and science of caring. Boston: Little, Brown & Co.

Wong-Wylie, G., & Jevne, R.F. (1997). Patient hope: Exploring the interactions between physicians and HIV seropositive individuals. Qualitative Health Research, 7(1), 32-56.

Yates, P. (1993). Towards a reconceptualization of hope for patients with a diagnosis of cancer. Journal of Advanced Nursing, 18, 701-706.

 

¹ Estudo realizado no âmbito do Mestrado em Psicologia da Saúde, ISPA