“We’re not going to say it’s suffering; we’re going to say it’s an experience”: The lived experience of maternal caregivers in pediatric kidney transplantation

References

• Aldridge, M. D. (2008). How do families adjust to having a child with chronic kidney failure? A systematic review. Nephrology Nursing Journal, 35(2), 157–162.
   PubMedGoogle Scholar
• Annells, M. (1996). Hermeneutic phenomenology: Philosophical perspectives and current use in nursing research. Journal of Advanced Nursing, 23(4), 705–713. doi:10.1111/j.1365-2648.1996.tb00041.x
   PubMed Web of Science ®Google Scholar
• Anthony, S. J., Hebert, D., Todd, L., Korus, M., Langlois, V., Pool, R., & Pollock-BarZiv, S. M. (2010). Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation. Pediatric Transplantation, 14(2), 249–256. doi:10.1111/j.1399-3046.2009.01214.x
   PubMed Web of Science ®Google Scholar
• Arafa, M. A., Zaher, S. R., El-Dowaty, A. A., & Moneeb, D. E. (2008). Quality of life among parents of children with heart disease. Health and Quality of Life Outcomes 6, 91, 1–7. doi:10.1186/1477-7525-6-91
   Web of Science ®Google Scholar
• Brownbridge, G., & Fielding, D. M. (1991). Psychosocial adjustment to end-stage renal failure: Comparing haemodialysis, continuous ambulatory peritoneal dialysis and transplantation. Pediatric Nephrology, 5(5), 612–616. doi:10.1007/BF00856653
   PubMed Web of Science ®Google Scholar
• Canadian Institute for Health Information (CIHI): Canadian Organ Replacement Register (2015). Treatment of end stage organ failure in Canada 2004–2013. Retrieved from http://secure.cihi.ca/estore/productFamily.htm?locale=en&pdf=PFC864&lang=en
   Google Scholar
• Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative research. Thousand Oaks, CA: Sage Publications Ltd.
   Google Scholar
• Cohen, M. H. (1993a). The unknown and the unknowable: Managing sustained uncertainty. Western Journal of Nursing Research, 15(1), 77–96. doi:10.1177/019394599301500106
   PubMedGoogle Scholar
• Cohen, M. H. (1993b). Diagnostic closure and the spread of uncertainty. Issues in Comprehensive Pediatric Nursing, 16(3), 135–146. doi:10.3109/01460869309078270
   PubMedGoogle Scholar
• Cousino, M. K., & Hazen, R. A. (2013). Parenting stress among caregivers of children with chronic illness. Journal of Pediatric Psychology, 38(8), 809–828. doi:10.1093/jpepsy/jst049
   PubMed Web of Science ®Google Scholar
• Davis, M. C., Tucker, C. M., & Fennell, R. S. (1996). Family behavior, adaptation, and treatment adherence of pediatric nephrology patients. Pediatric Nephrology, 10(2), 160–166. doi:10.1007/BF00862061
   PubMed Web of Science ®Google Scholar
• Diseth, T. H., Tangeraas, T., Reinfjell, T., & Bjerre, A. (2011). Kidney transplantation in childhood: Mental health and quality of life of children and caregivers. Pediatric Nephrology, 26(10), 1881–1892. doi:10.1007/s00467-011-1887-9
   PubMed Web of Science ®Google Scholar
• Fielding, D., Moore, B., Dewey, M., Ashley, P., McKendrick, T., & Pinkerton, P. (1985). Children with end-stage renal failure: Psychological effects on patients, siblings and parents. Journal of Psychosomatic Research, 29(5), 457–465. doi:10.1016/0022-3999(85)90079-0
   PubMed Web of Science ®Google Scholar
• Gilligan, C. (1982). In a different voice: Psychological theory and women’s development. Cambridge, MA: Harvard University Press.
   Google Scholar
• Klassen, A. F., Klaassen, R., Dix, D., Pritchard, S., Yanofsky, R., O’Donnell, M., & Sung, L. (2008). Impact of caring for a child with cancer on parents’ health-related quality of life. Journal of Clinical Oncology, 26(36), 5884–5889. doi:10.1200/JCO.2007.15.2835
   PubMed Web of Science ®Google Scholar
• Koocher, G. P. (1984). Terminal care and survivorship in pediatric chronic illness. Clinical Psychology Review, 4(5), 571–583. doi:10.1016/0272-7358(84)90045-X
   Web of Science ®Google Scholar
• Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer.
   Google Scholar
• Lester, S. (2010). An introduction to phenomenological research. Retrieved from http://www.devmts.demon.co.uk/resmethy.htm
   Google Scholar
• MacDonald, H. (1985). Chronic renal disease: The mother's experience. Pediatric Nursing, 21(6), 503–507.
   Google Scholar
• Martin, S. C., Stone, A. M., Scott, A. M., & Brashers, D. E. (2010). Medical, personal, and social Forms of uncertainty across the transplantation trajectory. Qualitative Health Research, 20, 182–196. doi:10.1177/1049732309356284
   PubMed Web of Science ®Google Scholar
• Merskhani, V. (2007). The longterm effects of PTSD and anxiety on depression among parents of pediatric organ transplant recipients. Proquest ( Dissertations and Theses). Retrieved from http://gradworks.umi.com/33/05/3305632.html
   Google Scholar
• Mishel, M. H. (1990). Reconceptualization of the uncertainty in illness theory. Image: The Journal of Nursing Scholarship, 22(4), 256–262. doi:10.1111/j.1547-5069.1990.tb00225.x
   PubMedGoogle Scholar
• Monaghan, M. C., Hilliard, M. E., Cogen, F. R., & Streisand, R. (2009). Nighttime caregiving behaviors among parents of young children with Type 1 diabetes: Associations with illness characteristics and parent functioning. Families, Systems, & Health, 27(1), 28–38. doi:10.1037/a0014770
   PubMed Web of Science ®Google Scholar
• Morse, J. M. (1994). Designing qualitative research. In N. K. Denzin, & Y. S. Lincoln (Eds.), Handbook of qualitative inquiry (pp. 220–235). Thousand Oaks, CA: Sage.
   Google Scholar
• Nicholas, D. B. (1999). Meanings of maternal caregiving: Children with end stage renal disease. Qualitative Health Research, 9(4), 468–478. doi:10.1177/104973299129122009
   Web of Science ®Google Scholar
• Starks, H., & Trinidad, S. B. (2007). Choose your method: A comparison of phenomenology, discourse analysis, and grounded theory. Qualitative Health Research, 17(10), 1372–1380. doi:10.1177/1049732307307031
   PubMed Web of Science ®Google Scholar
• Streisand, R., Braniecki, S., K P, T., & Kazak, A. E. (2001). Childhood illness-related parenting stress: The pediatric inventory for parents. Journal of Pediatric Psychology, 26, 155–162. doi:10.1093/jpepsy/26.3.155
   PubMed Web of Science ®Google Scholar
• Sundaram, S. S., Landgraf, J. M., Neighbors, K., Cohn, R. A., & Alonso, E. M. (2007). Adolescent health related quality of life following liver and kidney transplantation. American Journal of Transplantation, 7(4), 982–989. doi:10.1111/j.1600-6143.2006.01722.x
   PubMed Web of Science ®Google Scholar
• Tedeschi, R. G., & Calhoun, L. G. (2004). Posttraumatic growth: Conceptual foundations and empirical evidence. Psychological Inquiry, 15(1), 1–18. doi:10.1207/s15327965pli1501_01
   Web of Science ®Google Scholar
• Tong, A., Lowe, A., Sainsbury, P., & Craig, J. C. (2008). Experiences of parents who have children with chronic kidney disease: A systematic review of qualitative studies. Pediatrics, 121(2), 349–360. doi:10.1542/peds.2006-3470
   PubMed Web of Science ®Google Scholar
• Tong, A., Lowe, A., Sainsbury, P., & Craig, J. C. (2010). Parental perspectives on caring for a child with chronic kidney disease: An in-depth interview study. Child: Care, Health and Development, 36(4), 549–557. doi:10.1111/j.1365-2214.2010.01067.x
   PubMed Web of Science ®Google Scholar
• Van Manen, M. (1997). From meaning to method. Qualitative Health Research, 7(3), 345–369. doi:10.1177/104973239700700303
   Web of Science ®Google Scholar
• Wilson, H., & Hutchinson, S. (1991). Triangulation of qualitative methods. Heideggerian Hermenuetics and grounded theory. Qualitative Health Research, 1, 263–276.
   Google Scholar
• Young, B., Dixon-Woods, M., Findlay, M., & Heney, D. (2002). Parenting in a crisis: Conceptualizing mothers of children with cancer. Social Science and Medicine, 55, 1835–1847. doi:10.1016/S0277-953
   PubMed Web of Science ®Google Scholar