Hostname: page-component-cd9895bd7-q99xh Total loading time: 0 Render date: 2024-12-25T17:07:34.016Z Has data issue: false hasContentIssue false
  • English
  • Français

Parenting in the face of childhood life-threatening conditions: The ordinary in the context of the extraordinary

Published online by Cambridge University Press:  14 October 2015

Kim Mooney-Doyle  and
Janet A. Deatrick
Kim Mooney-Doyle*
Affiliation:
The Center for Global Women's Health and The Center for Health Equity Research, University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania
Janet A. Deatrick
Affiliation:
Center for Health Equity Research, University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania
*
Address correspondence and reprint requests to: Kim Mooney-Doyle, University of Pennsylvania School of Nursing, 418 Curie Boulevard, Philadelphia, Pennsylvania19104. E-mail: kemooney@nursing.upenn.edu.
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context.

Method:

Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings.

Results:

Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children.

Significance of results:

The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions.

Keywords

Palliative carePediatricParentingQualitative descriptionLife-threatening condition
Type
Original Articles
Information
Palliative & Supportive Care , Volume 14 , Issue 3 , June 2016 , pp. 187 - 198
Copyright
Copyright © Cambridge University Press 2015 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Alderfer, M.A., Long, K.A., Lown, E.A., et al. (2010). Psychosocial adjustment of siblings of children with cancer: A systematic review. Psycho-Oncology, 19, 789–905.CrossRefGoogle ScholarPubMed
Bingen, K., Kupst, M.J. & Himelstein, B. (2011). Development of the palliative care parental self-efficacy measure. Journal of Palliative Medicine, 14, 1009–1016.CrossRefGoogle ScholarPubMed
Bona, K., Dussel, V., Orellana, L., et al. (2014). Economic impact of advanced pediatric cancer on families. Journal of Pain and Symptom Management, 47, 594–603.Google Scholar
Bousso, R.S., Misko, M.D., Mendes-Castillo, A.M.C., et al. (2012). Family management style framework and its use with families who have a child undergoing palliative care at home. Journal of Family Nursing, 18, 91–122.CrossRefGoogle ScholarPubMed
Bronfenbrenner, U. (1979). The ecology of human development: Experiments by nature and design. Cambridge: Harvard University Press.Google Scholar
Carnevale, F.A., Alexander, E., Davis, M., et al. (2006). Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Pediatrics, 117, e48–e60.CrossRefGoogle ScholarPubMed
Corbin, J.M. & Strauss, A. (2014). Basics of qualitative research: Techniques and procedures for developing grounded theory. Thousand Oaks, CA: Sage Publications.Google Scholar
Davies, B. (2005). Children's perspectives of a pediatric hospice program. Journal of Palliative Care, 21, 252–261.CrossRefGoogle ScholarPubMed
Degeneffe, C.E. & Olney, M.F. (2010). “We are the forgotten victims”: Perspectives of adult siblings of persons with traumatic brain injury. Brain Injury, 24, 1416–1427.Google Scholar
Dussel, V., Bona, K., Heath, J.A., et al. (2011). Unmeasured costs of a child's death: Perceived financial burden, work disruptions, and economic coping strategies used by American and Australian families who lost children to cancer. Journal of Clinical Oncology, 29, 1007–1013.Google Scholar
Feudtner, C., Hays, R.M., Haynes, G., et al. (2001). Deaths attributable to pediatric complex chronic conditions: National trends and implications for supportive care. Pediatrics, 107, 1–5.CrossRefGoogle ScholarPubMed
Feudtner, C., Kang, T., Hexem, K.R., et al. (2011). Pediatric palliative care patients: A prospective multicenter cohort study. Pediatrics, 127, 1094–1101.Google Scholar
Freibert, S. (2009). National Hospice and Palliative Care Organization facts and figures: Pediatric palliative and hospice care in America. Alexandria: National Hospice and Palliative Care Organization.Google Scholar
Gerhardt, C.A., Fairclough, D.L., Grossenbacher, J.C., et al. (2012). Peer relationships of bereaved siblings and comparison classmates after a child's death from cancer. Journal of Pediatric Psychology, 37, 209–219.CrossRefGoogle ScholarPubMed
Goudie, A., Havercamp, S., Jamieson, B., et al. (2013). Assessing functional impairment in siblings living with children with disability. Pediatrics, 132, e476.CrossRefGoogle ScholarPubMed
Guba, E.G. (1981). Criteria for assessing the trustworthiness of naturalistic inquiries. Educational Communication and Technology Journal, 29, 75–91.Google Scholar
Heller, K.S. & Solomon, M.Z. (2005). Continuity of care and caring: What matters to parents of children with life-threatening conditions. Journal of Pediatric Nursing, 20, 335–346.Google Scholar
Hendricks-Ferguson, V. (2008). Physical symptoms of children receiving pediatric hospice care at home during the last week of life. Oncology Nursing Forum, 35, E108–E115.CrossRefGoogle ScholarPubMed
Hexem, K.R., Miller, V.A., Carroll, K.W., et al. (2013). Putting on a happy face: Emotional expression in parents of children with serious illness. Journal of Pain and Symptom Management, 45, 542–551.Google Scholar
Hill, D.L., Miller, V., Walter, J.K., et al. (2014). Regoaling: A conceptual model of how parents of children with serious illness change medical care goals. BMC Palliative Care, 13, 9–17.CrossRefGoogle ScholarPubMed
Hinds, P.S., Oakes, L.L., Hicks, J., et al. (2009). “Trying to be a good parent” as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children. Journal of Clinical Oncology, 27, 5979–5985.Google Scholar
Horowitz, J.A. (1995). A conceptualization of parenting: Examining the single-parent family. Marriage & Family Review, 20, 43–70.CrossRefGoogle Scholar
Institute of Medicine (IOM) (2014). Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press.Google Scholar
Kars, M.C., Grypdonck, M.H.F. & van Delden, J.J.M. (2011). Being a parent of a child with cancer throughout the end-of-life course. Oncology Nursing Forum, 38, E260–E271.Google Scholar
Knapp, C.A. & Contro, N. (2009). Family support services in pediatric palliative care. The American Journal of Hospice & Palliative Care, 26, 476–482.Google Scholar
Kochanek, K.D., Kirmeyer, S.E., Martin, J.A., et al. (2012). Annual summary of vital statistics. Pediatrics, 129, 338–348.CrossRefGoogle ScholarPubMed
Kreicbergs, U.C., Lannen, P., Onelov, E., et al. (2007). Parental grief after losing a child to cancer: Impact of professional and social support on long-term outcomes. Journal of Clinical Oncology, 25, 3307–3312.Google Scholar
MacDonald, H. & Callery, P. (2008). Parenting children requiring complex care: A journey through time. Child: Care, Health and Development, 34, 207–213.Google Scholar
Miller, E.G., LaRagione, G., Kang, T.I., et al. (2012). Concurrent care for the medically complex child: Lessons of implementation. Journal of Palliative Medicine, 15, 1281–1283.Google Scholar
Monterosso, L., Kristjanson, L.J. & Phillips, M.B. (2009). The supportive and palliative care needs of Australian families of children who die from cancer. Palliative Medicine, 23, 526–536.Google Scholar
Mooney-Doyle, K. Deatrick, J.A. & Horowitz, J.A. (2015). Tasks and communication as an avenue to enhance parenting of children birth-5 years: An integrative review. Journal of Pediatric Nursing, 30, 184–207.Google Scholar
Patton, M. (2002). Purposeful sampling. In Qualitative research and evaluation methods. Patton, M. (ed.), pp. 230–246. Thousand Oaks, CA: Sage Publications.Google Scholar
Pentz, R.D., Alderfer, M.A., Pelletier, W., et al. (2014). Unmet needs of siblings of pediatric stem cell transplant recipients. Pediatrics, 133, e1156–1162.Google Scholar
Rolland, J.S. (1987). Chronic illness and the life cycle: A conceptual framework. Family Process, 26, 203–221.Google Scholar
Rosenberg, A.R., Dussel, V., Kang, T., et al. (2013). Psychological distress in parents of children with advanced cancer. JAMA Pediatrics, 167, 537–543.CrossRefGoogle ScholarPubMed
Rosenberg, A.R., Postier, A., Osenga, K., et al. (2015). Long-term psychosocial outcomes among bereaved siblings of children with cancer. Journal of Pain and Symptom Management, 49, 55–65.Google Scholar
Sandelowski, M. (2000). Focus on research methods: Whatever happened to qualitative description? Research in Nursing & Health, 23, 334–340.3.0.CO;2-G>CrossRefGoogle Scholar
Sandelowski, M. & Barroso, J. (2002). Finding the findings in qualitative studies. Journal of Nursing Scholarship, 34, 213–219.Google Scholar
Sandelowski, M. & Barroso, J. (2003). Classifying the findings in qualitative research. Qualitative Health Research, 13, 905–923.Google Scholar
Thorne, S. (1993). Negotiating healthcare: The social context of chronic illness. Newbury Park, CA: Sage Publications.Google Scholar