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Erschienen in: Journal of Genetic Counseling 6/2010

01.12.2010 | Original Research

Death Anxiety and Symbolic Immortality in Relatives at Risk for Familial Amyloid Polyneuropathy Type I (FAP I, ATTR V30M)

verfasst von: Paula I. Santos, Eurico Figueiredo, Inês Gomes, Jorge Sequeiros

Erschienen in: Journal of Genetic Counseling | Ausgabe 6/2010

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Abstract

This study is an investigation of the impact of familial amyloid polyneuropathy type I (FAP I, ATTR V30M) on death anxiety and symbolic immortality. Templer and Drolet’s scales were administered to 524 individuals: (1) 84 relatives at risk, (2) 92 relatives not at risk for FAP I; and (3) a control group (n = 348) with no known hereditary disease in their families. At-risk relatives had, on average, a higher score for death anxiety and a lower score for symbolic immortality, than either those not-at-risk or controls. There were no significant differences in scores on either measure for those not-at-risk versus controls. Being at risk increases death anxiety and threatens the sense of symbolic immortality and psychosocial wellbeing. This may be true for other serious hereditary disorders as well. Genetic counsellors should become familiar with these concepts, feel comfortable initiating discussions about death with their patients, and be able to identify and reinforce their patients’ and family members’ sense of symbolic immortality.
Fußnoten
1
Granville Stanley Hall (1844–1924), first president of the American Psychological Association, founder of the first psychology laboratory in the USA.
 
Literatur
Zurück zum Zitat Andrade, C. (1952). A peculiar form of peripheral neuropathy: familial atypical generalized amyloidosis with special involvement of the peripheral nerves. Brain, 75, 408–427.CrossRefPubMed Andrade, C. (1952). A peculiar form of peripheral neuropathy: familial atypical generalized amyloidosis with special involvement of the peripheral nerves. Brain, 75, 408–427.CrossRefPubMed
Zurück zum Zitat Abdel-Khalek, A. (2002). Why do we fear death? The construction and validation of the reasons for death fear scale. Death Studies, 26(8), 80–669.CrossRef Abdel-Khalek, A. (2002). Why do we fear death? The construction and validation of the reasons for death fear scale. Death Studies, 26(8), 80–669.CrossRef
Zurück zum Zitat Abdel-Khalek, A., & Lester, D. (2009). Religiosity and death anxiety: no association in Kuwait. Psychological Reports, 104(3), 770–772.CrossRefPubMed Abdel-Khalek, A., & Lester, D. (2009). Religiosity and death anxiety: no association in Kuwait. Psychological Reports, 104(3), 770–772.CrossRefPubMed
Zurück zum Zitat Becker, E. (1973). The denial of death. New York: Free. Becker, E. (1973). The denial of death. New York: Free.
Zurück zum Zitat Benjamin, C. M., Colley, A., Donnai, D., Kingston, H., Harris, R., & Kerzin-Storrar, L. (1993). Neurofibromatosis type 1 (NF1): knowledge, experience, and reproductive decisions of affected patients and families. Journal of Medical Genetics, 30(7), 567–574.CrossRefPubMed Benjamin, C. M., Colley, A., Donnai, D., Kingston, H., Harris, R., & Kerzin-Storrar, L. (1993). Neurofibromatosis type 1 (NF1): knowledge, experience, and reproductive decisions of affected patients and families. Journal of Medical Genetics, 30(7), 567–574.CrossRefPubMed
Zurück zum Zitat Bennings, C. R., & Smith, A. (1994). Psychological needs of family members of liver transplant patients. Clinical Nurse Specialists, 8, 280–288. Bennings, C. R., & Smith, A. (1994). Psychological needs of family members of liver transplant patients. Clinical Nurse Specialists, 8, 280–288.
Zurück zum Zitat Biesecker, B., & Marteau, T. (1999). The future of genetic counselling: an international perspective. Nature Genetics, 22, 133–137.CrossRef Biesecker, B., & Marteau, T. (1999). The future of genetic counselling: an international perspective. Nature Genetics, 22, 133–137.CrossRef
Zurück zum Zitat Broadstock, M., Michie, S., & Marteau, T. (2000). Psychological consequences of predictive genetic testing: a systematic review. European Journal of Human Genetics, 8, 731–738.CrossRefPubMed Broadstock, M., Michie, S., & Marteau, T. (2000). Psychological consequences of predictive genetic testing: a systematic review. European Journal of Human Genetics, 8, 731–738.CrossRefPubMed
Zurück zum Zitat Conte, H., Weiner, M., & Plutchik, R. (1982). Measuring death anxiety: conceptual, psychometric, and factor-analytic aspects. Journal of Personality and Social Psychology, 43(4), 775–785.CrossRefPubMed Conte, H., Weiner, M., & Plutchik, R. (1982). Measuring death anxiety: conceptual, psychometric, and factor-analytic aspects. Journal of Personality and Social Psychology, 43(4), 775–785.CrossRefPubMed
Zurück zum Zitat Coutinho, P., Silva, A., Lima, J., & Barbosa, A. (1980). Forty years of experience with type I amyloid neuropathy. Review of 483 cases. In P. Coutinho, A. Martins da Silva, J. Kopes Lima & A. Resende Barbosa (Eds.), Amyloid and amyloidosis (pp. 88–98). Amsterdam: Experpta Medica. Coutinho, P., Silva, A., Lima, J., & Barbosa, A. (1980). Forty years of experience with type I amyloid neuropathy. Review of 483 cases. In P. Coutinho, A. Martins da Silva, J. Kopes Lima & A. Resende Barbosa (Eds.), Amyloid and amyloidosis (pp. 88–98). Amsterdam: Experpta Medica.
Zurück zum Zitat Cox, S., & McKellin, W. (2001). There’s this thing in our family’: predictive testing and the construction of risk for Huntington Disease. Sociology of Health & Illness, 21(5), 622–646.CrossRef Cox, S., & McKellin, W. (2001). There’s this thing in our family’: predictive testing and the construction of risk for Huntington Disease. Sociology of Health & Illness, 21(5), 622–646.CrossRef
Zurück zum Zitat Drolet, J. L. (1990). Transcending death during early adulthood: symbolic immortality, death anxiety, and purpose in life. Journal of Clinical Psychology, 46(2), 148–160.CrossRefPubMed Drolet, J. L. (1990). Transcending death during early adulthood: symbolic immortality, death anxiety, and purpose in life. Journal of Clinical Psychology, 46(2), 148–160.CrossRefPubMed
Zurück zum Zitat Decruyenaere, M., Evers-Kiebooms, G., & Van Den Berghe, H. (1993). Perception of predictive testing for Huntington S Disease by young women: preferring uncertainty to certainty? Journal of Medical Genetics, 30(7), 557–561.CrossRefPubMed Decruyenaere, M., Evers-Kiebooms, G., & Van Den Berghe, H. (1993). Perception of predictive testing for Huntington S Disease by young women: preferring uncertainty to certainty? Journal of Medical Genetics, 30(7), 557–561.CrossRefPubMed
Zurück zum Zitat Fanos, J. H., & Johnson, J. P. (1995). Perception of carrier status by cystic fibrosis siblings. American Journal of Human Genetics, 57(2), 431–438.PubMed Fanos, J. H., & Johnson, J. P. (1995). Perception of carrier status by cystic fibrosis siblings. American Journal of Human Genetics, 57(2), 431–438.PubMed
Zurück zum Zitat Fleming, M., & Lopes, A. (2000). Saber Ou Não Saber: Dinâmica e Impasses Psicológicos Na Doença Genética (P.A.F.). Revista Portuguesa de Psicossomática, 2(1), 33–40. Fleming, M., & Lopes, A. (2000). Saber Ou Não Saber: Dinâmica e Impasses Psicológicos Na Doença Genética (P.A.F.). Revista Portuguesa de Psicossomática, 2(1), 33–40.
Zurück zum Zitat Florian, V., & Mikulincer, M. (1998). Symbolic immortality and the management of terror of death: the moderation role of attachment style. Journal of Personality and Social Psychology, 74(3), 725–734.CrossRefPubMed Florian, V., & Mikulincer, M. (1998). Symbolic immortality and the management of terror of death: the moderation role of attachment style. Journal of Personality and Social Psychology, 74(3), 725–734.CrossRefPubMed
Zurück zum Zitat Fortner, B. V., & Neimeyer, R. A. (1999). Death anxiety in older adults: a quantitative review. Death Studies, 23(5), 387–411.CrossRefPubMed Fortner, B. V., & Neimeyer, R. A. (1999). Death anxiety in older adults: a quantitative review. Death Studies, 23(5), 387–411.CrossRefPubMed
Zurück zum Zitat Graceffa, A., Russo, M., Vita, G. L., Toscano, A., Dattola, R., Messina, C., et al. (2009). Psychosocial impact of presymptomatic genetic testing for transthyretin amyloid polyneuropathy. Neuromuscular Disorders, 19(1), 44–48.CrossRefPubMed Graceffa, A., Russo, M., Vita, G. L., Toscano, A., Dattola, R., Messina, C., et al. (2009). Psychosocial impact of presymptomatic genetic testing for transthyretin amyloid polyneuropathy. Neuromuscular Disorders, 19(1), 44–48.CrossRefPubMed
Zurück zum Zitat Holmgren, G., Ericzon, B. G., Groth, C. G., Steen, L., Suhr, O., Andersen, O., et al. (1993). Clinical improvement and amyloid regression after liver transplantation in hereditary transthyretin amyloidosis. Lancet, 341(8853), 1113–1116.CrossRefPubMed Holmgren, G., Ericzon, B. G., Groth, C. G., Steen, L., Suhr, O., Andersen, O., et al. (1993). Clinical improvement and amyloid regression after liver transplantation in hereditary transthyretin amyloidosis. Lancet, 341(8853), 1113–1116.CrossRefPubMed
Zurück zum Zitat Jonsen, E., Athlin, E., & Suhr, O. B. (2000). Family members’ experience of familial amyloidotic polyneuropathy disease—an infernal struggle and a fact of life. Journal of Advanced Nursing, 31(2), 347–353.CrossRefPubMed Jonsen, E., Athlin, E., & Suhr, O. B. (2000). Family members’ experience of familial amyloidotic polyneuropathy disease—an infernal struggle and a fact of life. Journal of Advanced Nursing, 31(2), 347–353.CrossRefPubMed
Zurück zum Zitat Lester, D. (2008). What do death anxiety scales measure? Psychological Reports, 101(1), 754. Lester, D. (2008). What do death anxiety scales measure? Psychological Reports, 101(1), 754.
Zurück zum Zitat Lester, D., & Templer, D. I. (1993). Death anxiety scales: a dialogue. Omega, 26(4), 239–353. Lester, D., & Templer, D. I. (1993). Death anxiety scales: a dialogue. Omega, 26(4), 239–353.
Zurück zum Zitat Lifton, R. J. (1964). On death and symbolism: the Hiroshima Disaster. Psychiatry, 27, 191–210.PubMed Lifton, R. J. (1964). On death and symbolism: the Hiroshima Disaster. Psychiatry, 27, 191–210.PubMed
Zurück zum Zitat Lifton, R. J. (1973). Twentieth Annual Karen Horney Lecture. The sense of immortality: on death and the continuity of life. American Journal of Psychoanalysis, 33(1), 3–15.CrossRefPubMed Lifton, R. J. (1973). Twentieth Annual Karen Horney Lecture. The sense of immortality: on death and the continuity of life. American Journal of Psychoanalysis, 33(1), 3–15.CrossRefPubMed
Zurück zum Zitat Lifton, R. J. (1979). The broken connection: on death and the continuity of life. Simon & Schuster, New York. Lifton, R. J. (1979). The broken connection: on death and the continuity of life. Simon & Schuster, New York.
Zurück zum Zitat Lifton, R. J. (1987). The future of immortality and other essays for a nuclear age. New York: Basic Books. Lifton, R. J. (1987). The future of immortality and other essays for a nuclear age. New York: Basic Books.
Zurück zum Zitat Lifton, R. J. (1991) Death in life: survivors of Hiroxima. The University of North Carolina Press. Lifton, R. J. (1991) Death in life: survivors of Hiroxima. The University of North Carolina Press.
Zurück zum Zitat Lifton, R. J., & Olson, E. (1974). Living and dying. New York: Praeger. Lifton, R. J., & Olson, E. (1974). Living and dying. New York: Praeger.
Zurück zum Zitat Lopes, A., & Fleming, M. (1996). Doença Somática e Organização Psíquica: Reflexões A Partir da Polineuropatia Amiloidótica Familiar. Revista Portuguesa de Psicanálise, 15, 93–100. Lopes, A., & Fleming, M. (1996). Doença Somática e Organização Psíquica: Reflexões A Partir da Polineuropatia Amiloidótica Familiar. Revista Portuguesa de Psicanálise, 15, 93–100.
Zurück zum Zitat Lopes, A., & Fleming, M. (1998). Aspectos Psicológicos da Polineuropatia Amiloidótica Familiar: A Trama Subterrânea Intergeracional. Brotéria Genética. XIX(XCIV), 183–192. Lopes, A., & Fleming, M. (1998). Aspectos Psicológicos da Polineuropatia Amiloidótica Familiar: A Trama Subterrânea Intergeracional. Brotéria Genética. XIX(XCIV), 183–192.
Zurück zum Zitat Mathews, R. C., & Mister, R. D. (1987–88). Measuring an individual’s investment in the future: symbolic sensation seeking, and psychic numbness. Omega, 18(3), 161–173. Mathews, R. C., & Mister, R. D. (1987–88). Measuring an individual’s investment in the future: symbolic sensation seeking, and psychic numbness. Omega, 18(3), 161–173.
Zurück zum Zitat McAllister, M. (2002). Predictive genetic testing and beyond: a theory of engagement. Journal of Health Psychology, 7, 491–508.CrossRef McAllister, M. (2002). Predictive genetic testing and beyond: a theory of engagement. Journal of Health Psychology, 7, 491–508.CrossRef
Zurück zum Zitat McAllister, M., Davies, L., Payne, K., Nicholls, S., Donai, D., & Mac Leod, R. (2007). The emotional effects of genetics diseases: implications of clinical genetics. American Journal of Medical Genetics. Part A, 143A, 2651–2661.CrossRefPubMed McAllister, M., Davies, L., Payne, K., Nicholls, S., Donai, D., & Mac Leod, R. (2007). The emotional effects of genetics diseases: implications of clinical genetics. American Journal of Medical Genetics. Part A, 143A, 2651–2661.CrossRefPubMed
Zurück zum Zitat McGovern, M., & Barry, M. M. (2000). Death education: knowledge, attitudes, and perspectives of Irish parents and teachers. Death Studies, 24(4), 325–333.CrossRefPubMed McGovern, M., & Barry, M. M. (2000). Death education: knowledge, attitudes, and perspectives of Irish parents and teachers. Death Studies, 24(4), 325–333.CrossRefPubMed
Zurück zum Zitat Mikulincer, M., & Florian, V. (2000). Exploring individual differences in reactions to mortality salience: does attachment style regulate terror management mechanisms? Journal of Personality and Social Psychology, 79(2), 260–273.CrossRefPubMed Mikulincer, M., & Florian, V. (2000). Exploring individual differences in reactions to mortality salience: does attachment style regulate terror management mechanisms? Journal of Personality and Social Psychology, 79(2), 260–273.CrossRefPubMed
Zurück zum Zitat Neimeyer, R. A., & Moore, M. K. (1994). Validity and reliability for of the multidimentional fear of death scale. In R. A. Neimeyer (Ed.), Death anxiety handbook: research, instrumentation, and application (pp. 103–117). Washington: Taylor & Francis. Neimeyer, R. A., & Moore, M. K. (1994). Validity and reliability for of the multidimentional fear of death scale. In R. A. Neimeyer (Ed.), Death anxiety handbook: research, instrumentation, and application (pp. 103–117). Washington: Taylor & Francis.
Zurück zum Zitat Paneque, H. M., Prieto, A. L., Reynaldo, R. R., Cruz, M. T., Santos, F. N., Almaguer, M. L., et al. (2007). Psychological aspects of presymptomatic diagnosis of spinocerebellar ataxia type 2 in Cuba. Community Genetics, 10(3), 132–139.CrossRefPubMed Paneque, H. M., Prieto, A. L., Reynaldo, R. R., Cruz, M. T., Santos, F. N., Almaguer, M. L., et al. (2007). Psychological aspects of presymptomatic diagnosis of spinocerebellar ataxia type 2 in Cuba. Community Genetics, 10(3), 132–139.CrossRefPubMed
Zurück zum Zitat Powell, F., & Thorson, J. (1991). Construction of death among those high in intrinsic religious motivation: a factor analytic study. Death Studies, 15(2), 131–138.CrossRef Powell, F., & Thorson, J. (1991). Construction of death among those high in intrinsic religious motivation: a factor analytic study. Death Studies, 15(2), 131–138.CrossRef
Zurück zum Zitat Rolim, L., Leite, A., Lêdo, S., Paneque, M., Sequeiros, J., & Fleming, M. (2006). Psychological aspects of pre-symptomatic testing for Machado-Joseph disease and familial amyloid polyneuropathy type I. Clinical Genetics, 69, 297–305.CrossRefPubMed Rolim, L., Leite, A., Lêdo, S., Paneque, M., Sequeiros, J., & Fleming, M. (2006). Psychological aspects of pre-symptomatic testing for Machado-Joseph disease and familial amyloid polyneuropathy type I. Clinical Genetics, 69, 297–305.CrossRefPubMed
Zurück zum Zitat Santos, P. I. (1999). Ansiedade perante a morte e imortalidade simbólica: Outro diálogo com os deficientes motores: Lisboa: Tese de Mestrado, Instituto Superior de Psicologia Aplicada, Lisboa. Santos, P. I. (1999). Ansiedade perante a morte e imortalidade simbólica: Outro diálogo com os deficientes motores: Lisboa: Tese de Mestrado, Instituto Superior de Psicologia Aplicada, Lisboa.
Zurück zum Zitat Saraiva, M. J., Costa, P. P., & Goodman, D. S. (1986). Genetic expression of a transthyretin mutation in typical and late-onset Portuguese families with familial amyloidotic polyneuropathy. Neurology, 36(11), 1413–1417.PubMed Saraiva, M. J., Costa, P. P., & Goodman, D. S. (1986). Genetic expression of a transthyretin mutation in typical and late-onset Portuguese families with familial amyloidotic polyneuropathy. Neurology, 36(11), 1413–1417.PubMed
Zurück zum Zitat Sequeiros, J. (1998). Prenatal diagnosis of late-onset diseases. Progresos en Diagnóstico Prenatal, 10(4), 218–220. Sequeiros, J. (1998). Prenatal diagnosis of late-onset diseases. Progresos en Diagnóstico Prenatal, 10(4), 218–220.
Zurück zum Zitat Sequeiros, J., & Saraiva, M. J. (1987). Onset in the seventh decade and lack of symptoms in heterozyotes for the Ttr (Met30). Mutation in hereditary Amyloid Neuropathy-Type I (Portuguese, Andrade). American Journal of Medical Genetics, 27(2), 345–357.CrossRefPubMed Sequeiros, J., & Saraiva, M. J. (1987). Onset in the seventh decade and lack of symptoms in heterozyotes for the Ttr (Met30). Mutation in hereditary Amyloid Neuropathy-Type I (Portuguese, Andrade). American Journal of Medical Genetics, 27(2), 345–357.CrossRefPubMed
Zurück zum Zitat Sousa, A., Coelho, T., Barros, J., & Sequeiros, J. (1995). Genetic epidemiology of familial amyloidotic polyneuropathy (FAP)-type I in Povoa do Varzim and Vila do Conde (north of Portugal). American Journal of Medical Genetics, 60(6), 512–521.CrossRefPubMed Sousa, A., Coelho, T., Barros, J., & Sequeiros, J. (1995). Genetic epidemiology of familial amyloidotic polyneuropathy (FAP)-type I in Povoa do Varzim and Vila do Conde (north of Portugal). American Journal of Medical Genetics, 60(6), 512–521.CrossRefPubMed
Zurück zum Zitat Suhr, O. B., Holmgren, G., Steen, L., Wikstrom, L., Norden, G., Friman, S., et al. (1995). Liver transplantation in familial amyloidotic polyneuropathy. Follow-up of the first 20 Swedish patients. Transplantation, 60(9), 933–938.CrossRefPubMed Suhr, O. B., Holmgren, G., Steen, L., Wikstrom, L., Norden, G., Friman, S., et al. (1995). Liver transplantation in familial amyloidotic polyneuropathy. Follow-up of the first 20 Swedish patients. Transplantation, 60(9), 933–938.CrossRefPubMed
Zurück zum Zitat Templer, D. (1970). The construction and validation of a death anxiety scale. The Journal of General Psychology, 82, 165–177.CrossRefPubMed Templer, D. (1970). The construction and validation of a death anxiety scale. The Journal of General Psychology, 82, 165–177.CrossRefPubMed
Zurück zum Zitat Templer, D. I. (1971). Death anxiety as related to depression and health of retired persons. Journal of Gerontology, 26, 228–236. Templer, D. I. (1971). Death anxiety as related to depression and health of retired persons. Journal of Gerontology, 26, 228–236.
Zurück zum Zitat Templer, D. (1972). Death anxiety and religiously involved person. Psychological Reports, 31(6), 361–362.PubMed Templer, D. (1972). Death anxiety and religiously involved person. Psychological Reports, 31(6), 361–362.PubMed
Zurück zum Zitat Thorson, J. A., & Powell, F. C. (1988). Elements of death anxiety and meanings of death. Journal of Clinical Psychology, 44, 691–701.CrossRefPubMed Thorson, J. A., & Powell, F. C. (1988). Elements of death anxiety and meanings of death. Journal of Clinical Psychology, 44, 691–701.CrossRefPubMed
Zurück zum Zitat Weil, J. (2000). Psychosocial genetic counselling. Oxford University Press. Weil, J. (2000). Psychosocial genetic counselling. Oxford University Press.
Zurück zum Zitat Wexler, S. N. (2004). Genetic “Russian Roulette” the experience of being “At Risk” for Huntington’s Disease. Genetic Counselling: Psychological Dimensions, by Academic Press, pp. 199–220. Wexler, S. N. (2004). Genetic “Russian Roulette” the experience of being “At Risk” for Huntington’s Disease. Genetic Counselling: Psychological Dimensions, by Academic Press, pp. 199–220.
Zurück zum Zitat Wu, A. M., & Tang, C. S. (2009). The negative impact of death anxiety on self-efficacy and willingness to donate organs among Chinese adults. Death Studies, 33(1), 51–72.CrossRefPubMed Wu, A. M., & Tang, C. S. (2009). The negative impact of death anxiety on self-efficacy and willingness to donate organs among Chinese adults. Death Studies, 33(1), 51–72.CrossRefPubMed
Metadaten
Titel
Death Anxiety and Symbolic Immortality in Relatives at Risk for Familial Amyloid Polyneuropathy Type I (FAP I, ATTR V30M)
verfasst von
Paula I. Santos
Eurico Figueiredo
Inês Gomes
Jorge Sequeiros
Publikationsdatum
01.12.2010
Verlag
Springer US
Erschienen in
Journal of Genetic Counseling / Ausgabe 6/2010
Print ISSN: 1059-7700
Elektronische ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-010-9311-3

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