Disorder and Disconnection: Parent experience of liminality when caring for their dying child.

Joanne Elizabeth Jordan, Jayne Price, Lindsay Prior

    Research output: Contribution to journalArticle

    7 Citations (Scopus)

    Abstract

    Parents caring for a child with a life threatening or life limiting illness experience a protracted and largely unknown journey, as they and their child oscillate somewhere between life and death. Using an interpretive qualitative approach, interviews were conducted with parents (n=25) of children who had died. Findings reveal parents’ experiences to be characterized by personal disorder and transformation as well as social marginalization and disconnection. As such they confirm the validity of understanding these experiences as, fundamentally, one of liminality, in terms of both individual and collective response. In dissecting two inter-related dimensions of liminality, an underlying tension between how transition is subjectively experienced and how it is socially regulated is exposed. In particular, a structural failure to recognize the chronic nature of felt liminality can impede parents' effective transition.
    LanguageEnglish
    Pages839-855
    JournalSociology of Health and Illness
    Volume37
    Issue number6
    Early online date27 Jul 2015
    DOIs
    Publication statusE-pub ahead of print - 27 Jul 2015

    Fingerprint

    dying
    parents
    experience
    illness
    death
    interview

    Keywords

    • Keywords: children
    • parents
    • life threatening / life limiting illness
    • transition
    • liminality

    Cite this

    Jordan, Joanne Elizabeth ; Price, Jayne ; Prior, Lindsay. / Disorder and Disconnection: Parent experience of liminality when caring for their dying child. In: Sociology of Health and Illness. 2015 ; Vol. 37, No. 6. pp. 839-855.
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    title = "Disorder and Disconnection: Parent experience of liminality when caring for their dying child.",
    abstract = "Parents caring for a child with a life threatening or life limiting illness experience a protracted and largely unknown journey, as they and their child oscillate somewhere between life and death. Using an interpretive qualitative approach, interviews were conducted with parents (n=25) of children who had died. Findings reveal parents’ experiences to be characterized by personal disorder and transformation as well as social marginalization and disconnection. As such they confirm the validity of understanding these experiences as, fundamentally, one of liminality, in terms of both individual and collective response. In dissecting two inter-related dimensions of liminality, an underlying tension between how transition is subjectively experienced and how it is socially regulated is exposed. In particular, a structural failure to recognize the chronic nature of felt liminality can impede parents' effective transition.",
    keywords = "Keywords: children, parents, life threatening / life limiting illness, transition, liminality",
    author = "Jordan, {Joanne Elizabeth} and Jayne Price and Lindsay Prior",
    note = "Reference text: References Allan, H. (2007) Experiences of infertility: liminality and the role of the fertility clinic, Nursing Inquiry, 14, 2, 132-139. Barbour, R.S. (2001) Checklists for improving rigor in qualitative research: A case of the tail wagging the dog?, British Medical Journal, 322, 1115-1117. Barton, T.D. (2007) Student nurse practitioners – A rite of passage? The universality of Van Gennep’s model of social transition, Nurse Education in Practice, 7, 338-347. Beaver, K. And Witham, G. (2006) Information needs of the informal carers of women treated for breast cancer, European Journal of Oncology Nursing, 11, 16–25. Beech, N. (2011) Liminality and the practices of identity construction, Human Relations, 64, 2, 285-302. Bury, M. (1982) Chronic illness as biographical disruption, Sociology of Health and Illness, 4, 2, 167–182. Contro, N., Larson, J., Schofield, S., Sourkes, B. and Cohen, H. (2004) Hospital staff and family perspectives regarding quality of pediatric palliative care, Pediatrics, 114, 5, 1248-1252. Cooley, C., Adeodu, S., Aldred, H., Beesley, S., Leung, A. and Thacker, L. (2000) Paediatric palliative care: a lack of research-based evidence, International Journal of Palliative Nursing, 6, 7, 346-351. Davis-Floyd, R. (1992) Birth as an American rite of passage. Berkeley, CA: University of California Press. Draper, J. (2003) Men’s passage to fatherhood: an analysis of the contemporary relevance of transition theory, Nursing Inquiry, 10, 1, 66-78. Froggatt, K. (1997) Rites of passage and the hospice culture, Mortality, 2, 2, 123-137. Glaser, B.G. and Strauss, A.L. (1967) The Discovery of Grounded Theory. Strategies for qualitative research. New Brunswick: Aldine Transaction. Graneheim, U.H. and Lundman, B. (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness, Nurse Education Today, 2(4), 105-112. Green, J. and Thorogood, N. (2009) Qualitative methods for health research. London: Sage. Harrow, A., Wells, M., Barbour, R. and Cable, S. (2008) Ambiguity and uncertainty: The ongoing concerns of male partners of women treated for breast cancer, European Journal of Oncology Nursing, 12, 349-356. Harrison, T.C. and Kahn, D.L. (2004) Disability Rites: The Cultural Shift Following Impairment, Family and Community Health, 27, 1, 86-93. Hockey, J. (2002) The importance of being intuitive: Arnold Van Gennep’s The Rites of Passage, Mortality, 7, 2, 210-217. Jackson, J. (2005) Stigma, liminality and chronic pain, American Ethnologist, 32, 3, 332-353. Jutel ,A.G. (2011) Putting a name to it. Diagnosis in contemporary society. Baltimore: John Hopkins University Press. Libera, A., Darmochwal-Kolarz, D. and Oleszczuk, J. (2007) Sense of coherence (SOC) and styles of coping with stress in women after premature delivery, Medical Science Monitoring, 13, 3, CR125-130. Little, M., Jordens, C.F.C., Paul, K., Montgomery, K. and Philipson B. (1998) Liminality: a major category of the experience of cancer illness, Social Science and Medicine, 47, 10, 1485-1494. Lugosi, P. (2007) Queer consumption and commercial hospitality: communitas, myths and the production of liminoid space, International Journal of Sociology and Social Policy, 27, 3 /4, 163-174. Martin-McDonald, K. and Biernoff, D. (2002) Initiation into a dialysis dependent life: an examination of rites of passage, Nephrology Nursing Journal, 29, 4, 347–352. Maruna ,S. (2011) Reentry as a rite of passage, Punishment and Society, 13, 1, 3-28. Mendelson, C. (2006) Managing a medically and socially complex life: Women living with lupus, Qualitative Health Research, 16, 982-997. Mendelson, C. (2009) Diagnosis: A Liminal State for Women Living With Lupus, Health Care for Women International, 30, 390-407. McDonnell, O., Lohan, M., Hyde, A. and Porter, S. (2009) Social Theory, Health and Healthcare. Palgrave Macmillan: London. Murphy, R.F., Scheer, J., Murphy Y. and Mack R. (1988) Physical disability and social liminality: A study in the rituals of adversity, Social Science and Medicine, 23, 235-242. Navon, L. and Morag, A. (2004) Liminality as biographical disruption: Unclassifiability following hormonal therapy for advanced prostate cancer, Social Science and Medicine, 58, 2337-2347. Northern Ireland Statistics and Research Agency (NISRA) (2011) Census 2011, Detailed Characteristics for Northern Ireland on Health, Religion and National Identity. Available from http://www.nisra.gov.uk/Census/detailedcharacteristics_stats_bulletin_2011.pdf Silverman, D. (2011) Interpreting Qualitative Data. London: Sage. Simpson, R., Sturges, J. and Weight, P. (2009) Transient, unsettling and creative space: Experiences of liminality through the accounts of Chinese students on a UK-based MBA, Management Learning, 41, 1, 53-70. Taylor, L. (2008) A Rites of Passage analysis of the families’ experience of premature birth, Journal of Neonatal Nursing, 14, 56-60. Turner, V. W. (1967) The Forest of Symbols. Ithaca, NY: Cornell University Press. Turner, V. W. (1969) The Ritual Process. Structure and Anti-Structure. New York: Aldine Transaction. Turner, V. W. (1974) Dramas, fields and metaphors: Symbolic action in human society. Ithaca, NY: Cornell University Press. Turner, V. W. (1982) From ritual to theatre: The human seriousness of play. New York: Performing Arts Journal Publications. van Gennep, A. (1909/1960) The rites of passage. London: Routledge & Kegan Paul. Ware, J. and Raval, H. (2007) A Qualitative investigation of fathers’ experiences of looking after a child with a life-limiting illness, in process and retrospect, Clinical child Psychology and Psychiatry, 12, 4, 349-564.",
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    Disorder and Disconnection: Parent experience of liminality when caring for their dying child. / Jordan, Joanne Elizabeth; Price, Jayne; Prior, Lindsay.

    In: Sociology of Health and Illness, Vol. 37, No. 6, 27.07.2015, p. 839-855.

    Research output: Contribution to journalArticle

    TY - JOUR

    T1 - Disorder and Disconnection: Parent experience of liminality when caring for their dying child.

    AU - Jordan, Joanne Elizabeth

    AU - Price, Jayne

    AU - Prior, Lindsay

    N1 - Reference text: References Allan, H. (2007) Experiences of infertility: liminality and the role of the fertility clinic, Nursing Inquiry, 14, 2, 132-139. Barbour, R.S. (2001) Checklists for improving rigor in qualitative research: A case of the tail wagging the dog?, British Medical Journal, 322, 1115-1117. Barton, T.D. (2007) Student nurse practitioners – A rite of passage? The universality of Van Gennep’s model of social transition, Nurse Education in Practice, 7, 338-347. Beaver, K. And Witham, G. (2006) Information needs of the informal carers of women treated for breast cancer, European Journal of Oncology Nursing, 11, 16–25. Beech, N. (2011) Liminality and the practices of identity construction, Human Relations, 64, 2, 285-302. Bury, M. (1982) Chronic illness as biographical disruption, Sociology of Health and Illness, 4, 2, 167–182. Contro, N., Larson, J., Schofield, S., Sourkes, B. and Cohen, H. (2004) Hospital staff and family perspectives regarding quality of pediatric palliative care, Pediatrics, 114, 5, 1248-1252. Cooley, C., Adeodu, S., Aldred, H., Beesley, S., Leung, A. and Thacker, L. (2000) Paediatric palliative care: a lack of research-based evidence, International Journal of Palliative Nursing, 6, 7, 346-351. Davis-Floyd, R. (1992) Birth as an American rite of passage. Berkeley, CA: University of California Press. Draper, J. (2003) Men’s passage to fatherhood: an analysis of the contemporary relevance of transition theory, Nursing Inquiry, 10, 1, 66-78. Froggatt, K. (1997) Rites of passage and the hospice culture, Mortality, 2, 2, 123-137. Glaser, B.G. and Strauss, A.L. (1967) The Discovery of Grounded Theory. Strategies for qualitative research. New Brunswick: Aldine Transaction. Graneheim, U.H. and Lundman, B. (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness, Nurse Education Today, 2(4), 105-112. Green, J. and Thorogood, N. (2009) Qualitative methods for health research. London: Sage. Harrow, A., Wells, M., Barbour, R. and Cable, S. (2008) Ambiguity and uncertainty: The ongoing concerns of male partners of women treated for breast cancer, European Journal of Oncology Nursing, 12, 349-356. Harrison, T.C. and Kahn, D.L. (2004) Disability Rites: The Cultural Shift Following Impairment, Family and Community Health, 27, 1, 86-93. Hockey, J. (2002) The importance of being intuitive: Arnold Van Gennep’s The Rites of Passage, Mortality, 7, 2, 210-217. Jackson, J. (2005) Stigma, liminality and chronic pain, American Ethnologist, 32, 3, 332-353. Jutel ,A.G. (2011) Putting a name to it. Diagnosis in contemporary society. Baltimore: John Hopkins University Press. Libera, A., Darmochwal-Kolarz, D. and Oleszczuk, J. (2007) Sense of coherence (SOC) and styles of coping with stress in women after premature delivery, Medical Science Monitoring, 13, 3, CR125-130. Little, M., Jordens, C.F.C., Paul, K., Montgomery, K. and Philipson B. (1998) Liminality: a major category of the experience of cancer illness, Social Science and Medicine, 47, 10, 1485-1494. Lugosi, P. (2007) Queer consumption and commercial hospitality: communitas, myths and the production of liminoid space, International Journal of Sociology and Social Policy, 27, 3 /4, 163-174. Martin-McDonald, K. and Biernoff, D. (2002) Initiation into a dialysis dependent life: an examination of rites of passage, Nephrology Nursing Journal, 29, 4, 347–352. Maruna ,S. (2011) Reentry as a rite of passage, Punishment and Society, 13, 1, 3-28. Mendelson, C. (2006) Managing a medically and socially complex life: Women living with lupus, Qualitative Health Research, 16, 982-997. Mendelson, C. (2009) Diagnosis: A Liminal State for Women Living With Lupus, Health Care for Women International, 30, 390-407. McDonnell, O., Lohan, M., Hyde, A. and Porter, S. (2009) Social Theory, Health and Healthcare. Palgrave Macmillan: London. Murphy, R.F., Scheer, J., Murphy Y. and Mack R. (1988) Physical disability and social liminality: A study in the rituals of adversity, Social Science and Medicine, 23, 235-242. Navon, L. and Morag, A. (2004) Liminality as biographical disruption: Unclassifiability following hormonal therapy for advanced prostate cancer, Social Science and Medicine, 58, 2337-2347. Northern Ireland Statistics and Research Agency (NISRA) (2011) Census 2011, Detailed Characteristics for Northern Ireland on Health, Religion and National Identity. Available from http://www.nisra.gov.uk/Census/detailedcharacteristics_stats_bulletin_2011.pdf Silverman, D. (2011) Interpreting Qualitative Data. London: Sage. Simpson, R., Sturges, J. and Weight, P. (2009) Transient, unsettling and creative space: Experiences of liminality through the accounts of Chinese students on a UK-based MBA, Management Learning, 41, 1, 53-70. Taylor, L. (2008) A Rites of Passage analysis of the families’ experience of premature birth, Journal of Neonatal Nursing, 14, 56-60. Turner, V. W. (1967) The Forest of Symbols. Ithaca, NY: Cornell University Press. Turner, V. W. (1969) The Ritual Process. Structure and Anti-Structure. New York: Aldine Transaction. Turner, V. W. (1974) Dramas, fields and metaphors: Symbolic action in human society. Ithaca, NY: Cornell University Press. Turner, V. W. (1982) From ritual to theatre: The human seriousness of play. New York: Performing Arts Journal Publications. van Gennep, A. (1909/1960) The rites of passage. London: Routledge & Kegan Paul. Ware, J. and Raval, H. (2007) A Qualitative investigation of fathers’ experiences of looking after a child with a life-limiting illness, in process and retrospect, Clinical child Psychology and Psychiatry, 12, 4, 349-564.

    PY - 2015/7/27

    Y1 - 2015/7/27

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    AB - Parents caring for a child with a life threatening or life limiting illness experience a protracted and largely unknown journey, as they and their child oscillate somewhere between life and death. Using an interpretive qualitative approach, interviews were conducted with parents (n=25) of children who had died. Findings reveal parents’ experiences to be characterized by personal disorder and transformation as well as social marginalization and disconnection. As such they confirm the validity of understanding these experiences as, fundamentally, one of liminality, in terms of both individual and collective response. In dissecting two inter-related dimensions of liminality, an underlying tension between how transition is subjectively experienced and how it is socially regulated is exposed. In particular, a structural failure to recognize the chronic nature of felt liminality can impede parents' effective transition.

    KW - Keywords: children

    KW - parents

    KW - life threatening / life limiting illness

    KW - transition

    KW - liminality

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    DO - 10.1111/1467-9566.12235

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