‘She’s done two and that’s harsh’: The agency of infants with congenital conditions as invoked through parent narratives

References

• Armstrong, D. (1995). The rise of surveillance medicine. Sociology of Health and Illness, 17(3), 393–404.
   Google Scholar
• Blizzard, D. (2007). Looking within: A sociocultural examination of fetoscopy. Cambridge, MA: MIT Press.
   Google Scholar
• Bruner, J. S. (1990). Acts of meaning. Cambridge, MA: Harvard University Press.
   Google Scholar
• Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4(2), 167–182.
   Google Scholar
• Bury, M. (1991). The sociology of chronic illness. Sociology of Health and Illness, 13(4), 451–468.
   Google Scholar
• Casper, M. J. (1998). The making of the unborn patient. New Brunswick, NJ: Rutgers University Press.
   Google Scholar
• Casper, M. J., & Moore, L. J. (2009). Missing bodies: The politics of visibility. New York, NY: New York University Press.
   Google Scholar
• Charmaz, K. (1983). Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health and Illness, 5(2), 168–195.
   Google Scholar
• Corlett, J., & Twycross, A. (2006). Negotiation of parental roles within family-centred care: A review of the research. Journal of Clinical Nursing, 15(10), 1308–1316.
   Google Scholar
• Crossley, N. (2011). Towards relational sociology. London, England: Routledge.
   Google Scholar
• Davidson, J. E. (2009). Family-centered care: Meeting the needs of patients’ families and helping families adapt to critical illness. Critical Care Nurse, 29(3), 28–35.
   Google Scholar
• Dengler, K. A., Scarfe, G., Redshaw, S., & Wilson, V. (2011). The Heart Beads Program. Journal of Specialist Pediatric Nursing, 16, 80–84.
   Google Scholar
• Dengler, K. A., Scarfe, G., Redshaw, S., & Wilson, V. (2012). Appreciation of a child’s journey: Implementation of a cardiac action research project. Nursing Research and Practice, 2012, 145030 online.
   Google Scholar
• Fenwick, J., Barclay, L., & Schmied, V. (2008). Craving closeness: A grounded theory analysis of women’s experiences of mothering in the special care nursery. Women and Birth, 21(2), 71–85.
   Google Scholar
• Foucault, M. (1973). The birth of the clinic: An archaeology of medical perception. London, England: Routledge.
   Google Scholar
• Frank, A. (1995). The wounded storyteller: Body, illness and ethics. Chicago, IL: University of Chicago Press.
   Google Scholar
• Glaser, B. G., & Strauss, A. L. (1965). Awareness of dying. Chicago, IL: Aldine.
   Google Scholar
• Glaser, B. G., & Strauss, A. L. (1968). Time for dying. Chicago, IL: Aldine.
   Google Scholar
• Goffman, E. (1963). Stigma. London, England: Penguin.
   Google Scholar
• Hawkins, A. H. (1999). Reconstructing illness: Studies in pathography. Lafayette, IN: Purdue University Press.
   Google Scholar
• Hemphill, L., Uccelli, P., Winner, K., Chang, C.-J., & Bellinger, D. (2002). Narrative discourse in young children with histories of early corrective heart surgery. Journal of Speech, Language, and Hearing Research, 45(2), 318–331.
   Google Scholar
• Jones, S. (2007). The baby as subject: The hospitalised infant and the family therapist. Australian and New Zealand Journal of Family Therapy, 28(3), 146–154.
   Google Scholar
• Kelly, M. P., & Field, D. (1996). Medical sociology, chronic illness and the body. Sociology of Health and Illness, 18(2), 241–257.
   Google Scholar
• Landsman, G. (2003). Emplotting children’s lives: Developmental delay vs. disability. Social Science & Medicine, 56(9), 1947–1960.
   Google Scholar
• Landsman, G. (2008). Reconstructing motherhood and disability in the age of perfect babies. New York, NY: Routledge.
   Google Scholar
• Landsman, G. H. (1998). Reconstructing motherhood in the age of ‘perfect’ babies: Mothers of infants and toddlers with disabilities. Signs, 24(1), 69–99.
   Google Scholar
• Layne, L. (2003). Motherhood lost: A feminist account of pregnancy loss in America. New York, NY: Routledge.
   Google Scholar
• Liamputtong, P. (2009). Qualitative data analysis: Conceptual and practical considerations. Health Promotion Journal of Australia, 20(2), 133–139.
   Google Scholar
• McGrath, J. M. (2000). Developmentally supportive caregiving and technology in the NICU: Isolation or merger of intervention strategies? Journal of Perinatal and Neonatal Nursing, 14(3), 78–91.
   Google Scholar
• Melnyk, B. M., Alpert-Gillis, L., Feinstein, N. F., Crean, H. F., Johnson, J., Fairbanks, E., … Corbo-Richert, B. (2004). Creating opportunities for parent empowerment: Program effects on the mental health/coping outcomes of critically Ill young children and their mothers. Pediatrics, 113(6), 597–607.
   Google Scholar
• Nash, A., & Hay, D. F. (2003). Social relations in infancy: Origins and evidence. Human Development, 46(4), 222–232.
   Google Scholar
• Ochs, E., & Capps, L. (1996). Narrating the self. Annual Review of Anthropology, 25, 19–43.
   Google Scholar
• Ohye, R., Sleeper, L., Mahony, L., Newburger, J., Pearson, G., Lu, M., … Gaynor, J. (2010). Comparison of shunt types in the Norwood procedure for single-ventricle lesions. The New England Journal of Medicine, 362(21), 1980–1992.
   Google Scholar
• Pierret, J. (2003). The illness experience: State of knowledge and perspectives for research. Sociology of Health and Illness, 25(3), 4–22.
   Google Scholar
• Power, N., & Franck, L. (2008). Parent participation in the care of hospitalized children: A systematic review. Journal of Advanced Nursing, 62(6), 622–641.
   Google Scholar
• Radley, A. (1997). What role does the body have in illness? In L. Yardley (Ed.), Material discourses of health and illness (pp. 50–67). New York, NY: Routledge.
   Google Scholar
• Radley, A. (2002). Portrayals of suffering: On looking away, looking at, and the comprehension of illness experience. Body and Society, 8(3), 1–23.
   Google Scholar
• Redshaw, S., & Wilson, V. (2012). Sibling involvement in childhood chronic heart disease through a bead program. Journal of Child Health Care, 16(1), 53–61.
   Google Scholar
• Redshaw, S., Wilson, V., Scarfe, G., & Dengler, L. (2011). Narratives of the heart: Telling the story of children with a cardiac condition through a bead program. Journal of Clinical Nursing, 20, 2802–2811.
   Google Scholar
• Scarfe, G., Redshaw, S., Wilson, V., & Dengler, L. (2012). Heart to heart: A programme for children on a cardiac ward. British Journal of Nursing, 21(2), 98–102.
   Google Scholar
• Smith, B., & Sparkes, A. C. (2008). Changing bodies, changing narratives and the consequences of tellability: A case study of becoming disabled through sport. Sociology of Health and Illness, 30(2), 217–236.
   Google Scholar
• Somers, M. R. (1994). The narrative constitution of identity: A relational and network approach. Theory and Society, 23(5), 605–649.
   Google Scholar
• Sparkes, A. C., & Smith, B. (2005). When narratives matter: Men, sport, and spinal cord injury. Medical Humanities, 31, 81–88.
   Google Scholar
• Timmermans, S., & Buchbinder, M. (2010). Patients-inwaiting. Journal of Health and Social Behavior, 51(4), 408–423.
   Google Scholar
• Uzark, K., & Jones, K. (2003). Parenting stress and children with heart disease. Journal of Pediatric Health Care, 17(4), 163–168.
   Google Scholar
• Walker, K., Holland, A. J., Winlaw, D., Sherwood, M., & Badawi, N. (2006). Neurodevelopmental outcomes and surgery in neonates. Journal of Paediatrics and Child Health, 42(12), 749–751.
   Google Scholar
• Wigert, H., Johansson, R., Berg, M., & Hellstrom, A. L. (2006). Mothers’ experiences of having their newborn child in a neonatal intensive care unit. Scandinavian Journal of Caring Sciences, 20(1), 35–41.
   Google Scholar
• Williams, G. H. (1984). The genesis of chronic illness: Narrative reconstruction. Sociology of Health and Illness, 6, 175–200.
   Google Scholar
• Williams, S. J. (2000). Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health and Illness, 22(1), 40–67.
   Google Scholar
• Wilson, V. J., McCormack, B. G., & Ives, G. (2005). Understanding the workplace culture of a special care nursery. Journal of Advanced Nursing, 50(1), 27–38.
   Google Scholar
• Winlaw, D. (2007). Congenital heart disease in the 21st century. Critical Care and Resuscitation, 9(3), 270–274.
   Google Scholar
• Yildiz, A., Celebioglu, A., & Olgun, H. (2009). Distress levels in Turkish parents of children with congenital heart disease. Australian Journal of Advanced Nursing, 26(3), 39–46.
   Google Scholar