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Volumn 26, Issue 11, 2011, Pages 1429-1445

'It's as if PBC didn't exist': The illness experience of women affected by primary biliary cirrhosis

Author keywords

delegitimation; fatigue; gender roles; illness experience; interpretative phenomenological analysis; primary biliary cirrhosis

Indexed keywords

ADULT; AGED; ARTICLE; BILIARY CIRRHOSIS; FEMALE; HUMAN; HUMAN RELATION; INTERVIEW; MALE; MIDDLE AGED; PATIENT; PSYCHOLOGICAL ASPECT; SELF CONCEPT; SEX DIFFERENCE;

EID: 84858779183     PISSN: 08870446     EISSN: 14768321     Source Type: Journal    
DOI: 10.1080/08870446.2011.565876     Document Type: Article
Times cited : (20)

References (66)
  • 1
    • 77955703311 scopus 로고    scopus 로고
    • The specificity of fatigue in primary biliary cirrhosis: Evaluation of a large clinic practice
    • Al-Harthy, N, Kumagi, T, Coltescu, C and Hirschfield, GH. 2010. The specificity of fatigue in primary biliary cirrhosis: Evaluation of a large clinic practice. Hepatology, 52: 562-570.
    • (2010) Hepatology , vol.52 , pp. 562-570
    • Al-Harthy, N.1    Kumagi, T.2    Coltescu, C.3    Hirschfield, G.H.4
  • 2
    • 42049090772 scopus 로고    scopus 로고
    • Individuals' experience of chronic fatigue syndrome/myalgic encephalomyelitis: An interpretative phenomenological analysis
    • Arroll, MA and Senior, V. 2007. Individuals' experience of chronic fatigue syndrome/myalgic encephalomyelitis: An interpretative phenomenological analysis. Psychology and Health, 23: 443-458.
    • (2007) Psychology and Health , vol.23 , pp. 443-458
    • Arroll, M.A.1    Senior, V.2
  • 3
    • 0035344114 scopus 로고    scopus 로고
    • Chronic illness - A disruption in life: Identity transformation among women with chronic fatigue syndrome and fibromyalgia
    • Asbring, JS. 2001. Chronic illness-A disruption in life: Identity transformation among women with chronic fatigue syndrome and fibromyalgia. Journal of Advanced Nursing, 34: 312-319.
    • (2001) Journal of Advanced Nursing , vol.34 , pp. 312-319
    • Asbring, J.S.1
  • 4
    • 0036479599 scopus 로고    scopus 로고
    • Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia
    • Asbring, P and Närvänen, AL. 2002. Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qualitative Health research, 2: 148-160.
    • (2002) Qualitative Health research , vol.2 , pp. 148-160
    • Asbring, P.1    Närvänen, A.L.2
  • 5
    • 0037803477 scopus 로고    scopus 로고
    • Ideal versus reality: Physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia
    • Asbring, P and Närvänen, AL. 2003. Ideal versus reality: Physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Social Science and Medicine, 57: 711-720.
    • (2003) Social Science and Medicine , vol.57 , pp. 711-720
    • Asbring, P.1    Närvänen, A.L.2
  • 6
    • 0041749569 scopus 로고
    • Doctors and their patients: The social control of women in general practice
    • In: Smart C., Smart B., editors London: Routledge & Kegan Paul
    • Barrett, M and Robert, H. 1978. "Doctors and their patients: The social control of women in general practice". In Women, sexuality and social control, Edited by: Smart, C. and Smart, B. 41-52. London: Routledge & Kegan Paul.
    • (1978) Women, sexuality and social control , pp. 41-52
    • Barrett, M.1    Robert, H.2
  • 9
    • 29744443746 scopus 로고    scopus 로고
    • A critical evaluation of the use of interpretative phenomenological analysis (IPA) in health psychology
    • Brocki, JM and Wearden, AJ. 2006. A critical evaluation of the use of interpretative phenomenological analysis (IPA) in health psychology. Psychology and Health, 21: 87-108.
    • (2006) Psychology and Health , vol.21 , pp. 87-108
    • Brocki, J.M.1    Wearden, A.J.2
  • 10
    • 0020321030 scopus 로고
    • Chronic illness as biographical disruption
    • Bury, M. 1982. Chronic illness as biographical disruption. Sociology of Health and Illness, 4: 167-182.
    • (1982) Sociology of Health and Illness , vol.4 , pp. 167-182
    • Bury, M.1
  • 11
    • 85024816419 scopus 로고
    • From biographical disruption to biographical reinforcement: The case of HIV-positive men
    • Carricaburu, D and Pierret, J. 1995. From biographical disruption to biographical reinforcement: The case of HIV-positive men. Sociology of Health and Illness, 17: 65-88.
    • (1995) Sociology of Health and Illness , vol.17 , pp. 65-88
    • Carricaburu, D.1    Pierret, J.2
  • 12
    • 0020790850 scopus 로고
    • Loss of self: A fundamental form of suffering in the chronically ill
    • Charmaz, K. 1983. Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health and Illness, 5: 168-195.
    • (1983) Sociology of Health and Illness , vol.5 , pp. 168-195
    • Charmaz, K.1
  • 14
    • 0042060980 scopus 로고    scopus 로고
    • The radicalized self: The impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome
    • Clarke, JN and James, S. 2003. The radicalized self: The impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome. Social Science and Medicine, 57: 1387-1395.
    • (2003) Social Science and Medicine , vol.57 , pp. 1387-1395
    • Clarke, J.N.1    James, S.2
  • 16
    • 0037314452 scopus 로고    scopus 로고
    • The body in health and illness
    • Corbin, JM. 2003. The body in health and illness. Qualitative Health Research, 13: 256-267.
    • (2003) Qualitative Health Research , vol.13 , pp. 256-267
    • Corbin, J.M.1
  • 18
    • 77953284855 scopus 로고    scopus 로고
    • Demographic, lifestyle, medical and familial factors associated with primary biliary cirrhosis
    • Corpechot, C, Chrétien, Y, Chazouillères, O and Poupon, R. 2010. Demographic, lifestyle, medical and familial factors associated with primary biliary cirrhosis. Journal of Hepatology, 53: 162-169.
    • (2010) Journal of Hepatology , vol.53 , pp. 162-169
    • Corpechot, C.1    Chrétien, Y.2    Chazouillères, O.3    Poupon, R.4
  • 19
    • 42049105957 scopus 로고    scopus 로고
    • That was my old life; it's almost like a past-life now: Identity crisis, loss and adjustment amongst people living with chronic fatigue syndrome
    • Dickson, A, Knussen, C and Flowers, P. 2007a. "That was my old life; it's almost like a past-life now": Identity crisis, loss and adjustment amongst people living with chronic fatigue syndrome. Psychology and Health, 23: 459-476.
    • (2007) Psychology and Health , vol.23 , pp. 459-476
    • Dickson, A.1    Knussen, C.2    Flowers, P.3
  • 20
    • 34547684263 scopus 로고    scopus 로고
    • Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome
    • Dickson, A, Knussen, C and Flowers, P. 2007b. Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome. Psychology and Health, 22: 851-867.
    • (2007) Psychology and Health , vol.22 , pp. 851-867
    • Dickson, A.1    Knussen, C.2    Flowers, P.3
  • 21
    • 29144502417 scopus 로고    scopus 로고
    • Illness you have to fight to get: Facts as forces in uncertain, emergent illnesses
    • Dumit, J. 2006. Illness you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science and Medicine, 62: 577-590.
    • (2006) Social Science and Medicine , vol.62 , pp. 577-590
    • Dumit, J.1
  • 22
    • 67649205149 scopus 로고    scopus 로고
    • EASL clinical practice guidelines: Management of cholestatic liver disease
    • EASL
    • EASL. 2009. EASL clinical practice guidelines: Management of cholestatic liver disease. Journal of Hepatology, 51: 237-267.
    • (2009) Journal of Hepatology , vol.51 , pp. 237-267
  • 23
    • 0033173387 scopus 로고    scopus 로고
    • The experience of women with primary biliary cirrhosis: A literature review
    • Fahey, S. 1999. The experience of women with primary biliary cirrhosis: A literature review. Journal of Advanced Nursing, 30: 506-512.
    • (1999) Journal of Advanced Nursing , vol.30 , pp. 506-512
    • Fahey, S.1
  • 25
    • 21144482197 scopus 로고
    • The rhetoric of self-change: Illness experience as narrative
    • Frank, A. 1993. The rhetoric of self-change: Illness experience as narrative. The Sociological Quarterly, 34: 39-52.
    • (1993) The Sociological Quarterly , vol.34 , pp. 39-52
    • Frank, A.1
  • 29
    • 0034173177 scopus 로고    scopus 로고
    • Fatigue in chronic fatigue syndrome: A discourse analysis of women's experiential narratives
    • Hart, B and Grace, VM. 2000. Fatigue in chronic fatigue syndrome: A discourse analysis of women's experiential narratives. Health Care for Women International, 21: 187-201.
    • (2000) Health Care for Women International , vol.21 , pp. 187-201
    • Hart, B.1    Grace, V.M.2
  • 30
    • 84858776593 scopus 로고
    • Paris: Edition de l'Ecole des Hautes Etudes en Sciences Sociales
    • Herlizh, C. 1969. Santé et Maladie, Paris: Edition de l'Ecole des Hautes Etudes en Sciences Sociales.
    • (1969) Santé et Maladie
    • Herlizh, C.1
  • 31
    • 0037647027 scopus 로고    scopus 로고
    • Social representations and health psychology
    • Joffe, H. 2002. Social representations and health psychology. Social Science Information, 41: 559-580.
    • (2002) Social Science Information , vol.41 , pp. 559-580
    • Joffe, H.1
  • 32
    • 33747741790 scopus 로고    scopus 로고
    • A phenomenological study of fatigue in patients with primary biliary cirrhosis
    • Jorgensen, R. 2006. A phenomenological study of fatigue in patients with primary biliary cirrhosis. Journal of Advanced Nursing, 55: 689-697.
    • (2006) Journal of Advanced Nursing , vol.55 , pp. 689-697
    • Jorgensen, R.1
  • 33
    • 54449083199 scopus 로고    scopus 로고
    • Chronic fatigue: An evolutionary concept analysis
    • Jorgensen, R. 2008. Chronic fatigue: An evolutionary concept analysis. Journal of Advanced Nursing, 62: 199-207.
    • (2008) Journal of Advanced Nursing , vol.62 , pp. 199-207
    • Jorgensen, R.1
  • 35
    • 0002453415 scopus 로고
    • Pain and resistance: The delegitimation and relegitimation of local worlds
    • In: Del Vecchio Good M.J., Brodwin P.E., Good B.J., Kleinman A., editors Berkeley: University of California Press
    • Kleinman, A. 1992. "Pain and resistance: The delegitimation and relegitimation of local worlds". In Pain as human experience: An anthropological perspective, Edited by: Del Vecchio Good, M.J., Brodwin, P.E., Good, B.J. and Kleinman, A. Berkeley: University of California Press.
    • (1992) Pain as human experience: An anthropological perspective
    • Kleinman, A.1
  • 36
    • 0028903581 scopus 로고
    • The social course of epilepsy: Chronic illness as social experience in interior China
    • Kleinman, A, Wang, W, Li, S, Cheng, X, Dai, K and Kleinman, J. 1995. The social course of epilepsy: Chronic illness as social experience in interior China. Social Science and Medicine, 40: 1319-1330.
    • (1995) Social Science and Medicine , vol.40 , pp. 1319-1330
    • Kleinman, A.1    Wang, W.2    Li, S.3    Cheng, X.4    Dai, K.5    Kleinman, J.6
  • 38
    • 35948957417 scopus 로고    scopus 로고
    • Identity and coping experience in chronic fatigue syndrome: A synthesis of qualitative studies
    • Larun, L and Malterud, K. 2007. Identity and coping experience in chronic fatigue syndrome: A synthesis of qualitative studies. Patient Education and Counseling, 69: 20-28.
    • (2007) Patient Education and Counseling , vol.69 , pp. 20-28
    • Larun, L.1    Malterud, K.2
  • 39
    • 27844554031 scopus 로고    scopus 로고
    • The role of an online community for people with a rare disease: Content analysis of messages posted on a primary biliary cirrhosis mailinglist
    • Retrieved from
    • Lasker, J.N., Sogolow, E.D., & Sharim, R.R. (2005). The role of an online community for people with a rare disease: Content analysis of messages posted on a primary biliary cirrhosis mailinglist. Journal of Medical Internet Research, 7, Retrieved fromhttp://www.jmir.org/2005/1/e10/
    • (2005) Journal of Medical Internet Research , pp. 7
    • Lasker, J.N.1    Sogolow, E.D.2    Sharim, R.R.3
  • 40
    • 0028538883 scopus 로고
    • Women with HIV and their burden of caring
    • Lea, A. 1994. Women with HIV and their burden of caring. Health Care for Women International, 15: 489-501.
    • (1994) Health Care for Women International , vol.15 , pp. 489-501
    • Lea, A.1
  • 41
    • 34548645687 scopus 로고    scopus 로고
    • The passing dilemma in socially invisible diseases: Narratives on chronic headache
    • Lonardi, C. 2007. The passing dilemma in socially invisible diseases: Narratives on chronic headache. Social Science and Medicine, 65: 1619-1629.
    • (2007) Social Science and Medicine , vol.65 , pp. 1619-1629
    • Lonardi, C.1
  • 42
    • 0033779668 scopus 로고    scopus 로고
    • Symptoms as a source of medical knowledge: Understanding medically unexplained disorders in women
    • Malterud, K. 2000. Symptoms as a source of medical knowledge: Understanding medically unexplained disorders in women. Family Medicine, 32: 603-611.
    • (2000) Family Medicine , vol.32 , pp. 603-611
    • Malterud, K.1
  • 43
    • 0039595245 scopus 로고    scopus 로고
    • Seeking validation: Hypothyroidism and the chronic illness trajectory
    • Milliken, P and Northcott, H. 1996. Seeking validation: Hypothyroidism and the chronic illness trajectory. Qualitative Health Research, 6: 202-223.
    • (1996) Qualitative Health Research , vol.6 , pp. 202-223
    • Milliken, P.1    Northcott, H.2
  • 45
    • 0000351835 scopus 로고
    • Health paradigms, social representations of health and illness and their central nucleus
    • Nascimento-Schulze, CM, Garcia, YF and Arruda, DC. 1995. Health paradigms, social representations of health and illness and their central nucleus. Papers on Social Representations, 4(2): 1-12.
    • (1995) Papers on Social Representations , vol.4 , Issue.2 , pp. 1-12
    • Nascimento-Schulze, C.M.1    Garcia, Y.F.2    Arruda, D.C.3
  • 46
    • 33644881431 scopus 로고    scopus 로고
    • Characterisation of the associations and impact of symptoms in primary biliary cirrhosis using a disease specific quality of life measure
    • Newton, JL, Bhala, N, Burt, J and Jones, DEJ. 2006. Characterisation of the associations and impact of symptoms in primary biliary cirrhosis using a disease specific quality of life measure. Journal of Hepatology, 44: 776-783.
    • (2006) Journal of Hepatology , vol.44 , pp. 776-783
    • Newton, J.L.1    Bhala, N.2    Burt, J.3    Jones, D.E.J.4
  • 49
    • 2442663853 scopus 로고    scopus 로고
    • Asymptomatic primary biliary cirrhosis: Clinical features, prognosis, and symptom progression in a large population based cohort
    • Prince, M, Chetwynd, A, Craig, WL, Metcalf, JV and James, OF. 2004. Asymptomatic primary biliary cirrhosis: Clinical features, prognosis, and symptom progression in a large population based cohort. Gut, 53: 865-870.
    • (2004) Gut , vol.53 , pp. 865-870
    • Prince, M.1    Chetwynd, A.2    Craig, W.L.3    Metcalf, J.V.4    James, O.F.5
  • 50
    • 0036787339 scopus 로고    scopus 로고
    • Survival and symptom progression in a large geographically based cohort of patients with primary biliary cirrhosis: Follow-up for up to 28 years
    • Prince, M, Chetwynd, A, Newman, W, Metcalf, JV and James, OF. 2002. Survival and symptom progression in a large geographically based cohort of patients with primary biliary cirrhosis: Follow-up for up to 28 years. Gastroenterology, 123: 1044-1051.
    • (2002) Gastroenterology , vol.123 , pp. 1044-1051
    • Prince, M.1    Chetwynd, A.2    Newman, W.3    Metcalf, J.V.4    James, O.F.5
  • 52
    • 0020960395 scopus 로고
    • Primary biliary cirrhosis: Diagnosis, pathology and pathogenesis
    • Scheuer, P.J. (1983), Primary biliary cirrhosis: Diagnosis, pathology and pathogenesis. Postgraduate Medical Journal, 59, 106-115
    • (1983) Postgraduate Medical Journal , vol.59 , pp. 106-115
    • Scheuer, P.J.1
  • 53
    • 85008776315 scopus 로고    scopus 로고
    • Reflecting on the development of interpretative phenomenological analysis and its contribution to qualitative research in psychology
    • Smith, JA. 2004. Reflecting on the development of interpretative phenomenological analysis and its contribution to qualitative research in psychology. Qualitative Research in Psychology, 1: 39-54.
    • (2004) Qualitative Research in Psychology , vol.1 , pp. 39-54
    • Smith, J.A.1
  • 55
    • 45849115385 scopus 로고    scopus 로고
    • Fatigue as a major predictor of quality of life in women with autoimmune liver disease. The case of primary biliary cirrhosis
    • Sogolow, ED, Lasker, JN and Short, LM. 2008. Fatigue as a major predictor of quality of life in women with autoimmune liver disease. The case of primary biliary cirrhosis. Women's Health Issues, 18: 336-342.
    • (2008) Women's Health Issues , vol.18 , pp. 336-342
    • Sogolow, E.D.1    Lasker, J.N.2    Short, L.M.3
  • 56
    • 0033910678 scopus 로고    scopus 로고
    • Fatigue in chronic disease
    • Swain, MG. 2000. Fatigue in chronic disease. Clinical Science, 99(1): 1-8.
    • (2000) Clinical Science , vol.99 , Issue.1 , pp. 1-8
    • Swain, M.G.1
  • 57
    • 29744467429 scopus 로고    scopus 로고
    • Contextual shifts in Bulgarian women's identity in the face of infertility
    • Torodova, ILG and Kotzeva, T. 2006. Contextual shifts in Bulgarian women's identity in the face of infertility. Psychology and Health, 21: 123-141.
    • (2006) Psychology and Health , vol.21 , pp. 123-141
    • Torodova, I.L.G.1    Kotzeva, T.2
  • 58
    • 33750165415 scopus 로고    scopus 로고
    • Premenstrual syndrome and self-policing: Ruptures in self-silencing leading to increase self-surveillance and blaming of the body
    • Ussher, JM. 2004. Premenstrual syndrome and self-policing: Ruptures in self-silencing leading to increase self-surveillance and blaming of the body. Social Theory and Health, 2: 254-272.
    • (2004) Social Theory and Health , vol.2 , pp. 254-272
    • Ussher, J.M.1
  • 59
    • 52949106108 scopus 로고    scopus 로고
    • Gender differences in the construction and experience of cancer care: The consequences of the gendered positioning of carers
    • Ussher, JM and Sandoval, M. 2008. Gender differences in the construction and experience of cancer care: The consequences of the gendered positioning of carers. Psychology and Health, 23: 945-963.
    • (2008) Psychology and Health , vol.23 , pp. 945-963
    • Ussher, J.M.1    Sandoval, M.2
  • 60
    • 0018487510 scopus 로고
    • Physician stereotypes about female health and illness: A study of patient's sex and the informative process during medical interviews
    • Wallen, J, Waitzin, H and Stockle, JD. 1979. Physician stereotypes about female health and illness: A study of patient's sex and the informative process during medical interviews. Women and Health, 4: 135-146.
    • (1979) Women and Health , vol.4 , pp. 135-146
    • Wallen, J.1    Waitzin, H.2    Stockle, J.D.3
  • 61
    • 84934563912 scopus 로고
    • Suffering and the social construction of illness: The delegitimation of illness experience in chronic fatigue syndrome
    • Ware, NC. 1992. Suffering and the social construction of illness: The delegitimation of illness experience in chronic fatigue syndrome. Medical Anthropology Quarterly, 6: 347-361.
    • (1992) Medical Anthropology Quarterly , vol.6 , pp. 347-361
    • Ware, N.C.1
  • 62
    • 0033192176 scopus 로고    scopus 로고
    • Toward a model of social course in chronic illness: The example of chronic fatigue syndrome
    • Ware, NC. 1999. Toward a model of social course in chronic illness: The example of chronic fatigue syndrome. Culture, Medicine and Psychiatry, 23: 303-331.
    • (1999) Culture, Medicine and Psychiatry , vol.23 , pp. 303-331
    • Ware, N.C.1
  • 63
    • 2942536051 scopus 로고    scopus 로고
    • I am not the kind of woman who complains of everything: Illness stories on self and shame in women with chronic pain
    • Werner, A, Isaksen, LW and Malterud, K. 2004. "I am not the kind of woman who complains of everything": Illness stories on self and shame in women with chronic pain. Social Science and Medicine, 59: 1035-1045.
    • (2004) Social Science and Medicine , vol.59 , pp. 1035-1045
    • Werner, A.1    Isaksen, L.W.2    Malterud, K.3
  • 64
    • 0043062633 scopus 로고    scopus 로고
    • It is hard work behaving as a credible patient: Encounters between women with chronic pain and their doctors
    • Werner, A and Malterud, K. 2003. It is hard work behaving as a credible patient: Encounters between women with chronic pain and their doctors. Social Science and Medicine, 57: 1409-1419.
    • (2003) Social Science and Medicine , vol.57 , pp. 1409-1419
    • Werner, A.1    Malterud, K.2
  • 65
    • 34247555371 scopus 로고    scopus 로고
    • When you have children, you're obliged to live: Motherhood, chronic illness and biographical disruption
    • Wilson, S. 2007. "When you have children, you're obliged to live": Motherhood, chronic illness and biographical disruption. Sociology of Health and Illness, 29: 610-626.
    • (2007) Sociology of Health and Illness , vol.29 , pp. 610-626
    • Wilson, S.1
  • 66
    • 0034024061 scopus 로고    scopus 로고
    • Gender differences in psychiatric morbidity among family caregivers: A review and analysis
    • Yee, JL and Schulz, R. 2000. Gender differences in psychiatric morbidity among family caregivers: A review and analysis. The Gerontologist, 40: 147-164.
    • (2000) The Gerontologist , vol.40 , pp. 147-164
    • Yee, J.L.1    Schulz, R.2


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