Hostname: page-component-8448b6f56d-cfpbc Total loading time: 0 Render date: 2024-04-23T09:21:45.163Z Has data issue: false hasContentIssue false

The need to support caregivers during pediatric bone marrow transplantation (BMT): A case report

Published online by Cambridge University Press:  30 January 2018

Christina Mangurian*
Affiliation:
University of California, San Francisco, San Francisco, Calfornia
Wendy Packman
Affiliation:
Palo Alto University, Palo Alto, California
Nicholas S. Riano
Affiliation:
University of California, San Francisco, San Francisco, Calfornia
Julia Kearney
Affiliation:
Memorial Sloan Kettering Cancer Center, New York, New York Weill Cornell College of Medicine, New York, New York
*
Address correspondence and reprint requests to: Christina Mangurian UCSF/Zuckerberg San Francisco General, Weill Institute for Neurosciences, Department of Psychiatry, 1001 Potrero Ave, Suite 7M, San Francisco, CA 94110. E-mail: christina.mangurian@ucsf.edu.

Abstract

Objective:

Pediatric bone marrow transplants represent a medically stressful, potentially traumatic experience for children and caregivers, and psychological support for parental caregivers is paramount to their long-term well-being. However, many medical centers do not have protocols in place to sustain caregiver well-being during these distressing experiences.

Method:

We report on a case of a 10-month-old infant with Wiskott Aldrich Syndrome who was hospitalized for bone marrow transplantation.

Result:

We describe the significant burden that fell upon caregivers during and after a bone marrow transplantation.

Significance of results:

This case helped guide our suggestions to improve care for caregivers. Several logistical hurdles could be overcome to alleviate some of these burdens. We suggest that a child psychologist or psychiatrist should be on patient care teams and be attentive to parental stress, impairments, or impediments to self-care, and signs of emergency of mental illness in this setting of medical trauma. Additionally, promotion of sleep hygiene and linkage to support systems can maximize resiliency. Finally, we believe that hospital administrators should partner with clinicians to facilitate routine support during highly stressful transitions of care.

Type
Case Report
Copyright
Copyright © Cambridge University Press 2018 

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

Barrera, M., Atenafu, E., Doyle, J., et al. (2012). Differences in mothers’ and fathers’ psychological distress after pediatric SCT: Alongitudinal study. Bone Marrow Transplant, 47(7), 934939.Google Scholar
Carter, P.A. (2006). A brief behavioral sleep intervention for family caregivers of persons with cancer. Cancer Nursing, 29(2), 95103.CrossRefGoogle ScholarPubMed
Devine, K.A., Manne, S.L., Mee, L., et al. (2016). Barriers to psychological care among primary caregivers of children undergoing hematopoietic stem cell transplantation. Supportive Care in Cancer, 24(5), 22352242.Google Scholar
Gemmill, R., Cooke, L., Williams, A.C., et al. (2011). Informal caregivers of hematopoietic cell transplant patients: A review and recommendations for interventions and research. Cancer Nursing, 34(6), E13E21.Google Scholar
Heinze, K.E., Rodday, A.M., Nolan, M.T., et al. (2015). The impact of pediatric blood and marrow transplant on parents: Introduction of the parent impact scale. Health and Quality of Life Outcomes, 13(1), 1.Google Scholar
Irish, L.A., Kline, C.E., Gunn, H.E., et al. (2015). The role of sleep hygiene in promoting public health: A review of empirical evidence. Sleep Medicine Reviews, 22, 2336.Google Scholar
Kaziunas, E., Buyuktur, A.G., Jones, J., et al. (2015). Transition and reflection in the use of health information: The case of pediatric bone marrow transplant caregivers. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing, pp. 17631774.Google Scholar
Kearney, J.A., Salley, C.G. and Muriel, A.C. (2015). Standards of psychosocial care for parents of children with cancer. Pediatric Blood & Cancer, 62(Suppl 5), S632S683.Google Scholar
Lindahl Norberg, A., Mellgren, K., Winiarski, J., et al. (2014). Relationship between problems related to child late effects and parent burnout after pediatric hematopoietic stem cell transplantation. Pediatric Transplantation, 18(3), 302309.Google Scholar
Lotsa Helping Hands (2015). Lotsa Helping Hands. Available from http://lotsahelpinghands.com/.Google Scholar
Majhail, N.S., Mau, L.W., Denzen, E.M., et al. (2013). Costs of autologous and allogeneic hematopoietic cell transplantation in the United States: A study using a large national private claims database. Bone Marrow Transplant, 48(2), 294300.CrossRefGoogle ScholarPubMed
Mangurian, C. and Cowan, M.J. (2013). The missing vital sign. BMJ, 347, f4163.CrossRefGoogle ScholarPubMed
Manne, S., Mee, L., Bartell, A., et al. (2016). A randomized clinical trial of a parent-focused social-cognitive processing intervention for caregivers of children undergoing hematopoetic stem cell transplantation. Journal of Consulting and Clinical Psychology, 84(5), 389.Google Scholar
Myers, K.C. and Davies, S.M. (2009). Hematopoietic stem cell transplantation for bone marrow failure syndromes in children. Biology of Blood and Marrow Transplantation, 15(3), 279292.CrossRefGoogle ScholarPubMed
National Marrow Donor Program (2016). Be the Match. Available from https://bethematch.org/.Google Scholar
Packman, W., Weber, S., Wallace, J. et al. (2010). Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: A review. Bone Marrow Transplant, 45(7), 11341146.Google Scholar
Packman, W., Crittenden, M.R., Fischer, J.B.R., et al. (1998). Siblings' perceptions of the bone marrow transplantation process. Journal of Psychosocial Oncology, 15(3–4), 81105.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(5), e1156e1162.Google Scholar
Ritmala-Castren, M., Virtanen, I., Leivo, S., et al. (2015). Sleep and nursing care activities in an intensive care unit. Nursing & Health Sciences, 17(3), 354361.CrossRefGoogle Scholar
Sahler, O.J.Z., Dolgin, M.J., Phipps, S., et al. (2013). Specificity of problem-solving skills training in mothers of children newly diagnosed with cancer: Results of a multisite randomized clinical trial. Journal of Clinical Oncology, 31(10), 13291335.Google Scholar
Schmit-Pokorny, K., Franco, T., Frappier, B., et al. (2003). The Cooperative Care model: An innovative approach to deliver blood and marrow stem cell transplant care. Clinical Journal of Oncology Nursing, 7(5), 509514, 556.CrossRefGoogle Scholar
Schor, E.L. (2003). Family pediatrics: Report of the Task Force on the Family. Pediatrics, 111(6 Pt 2), 15411571.Google Scholar
Steptoe, A., O'Donnell, K., Marmot, M., et al. (2008). Positive affect, psychological well-being, and good sleep. Journal of Psychosomatic Research, 64(4), 409415.Google Scholar
Von Ah, D., Spath, M., Nielsen, A., et al. (2016). The caregiver's role across the bone marrow transplantation trajectory. Cancer Nursing, 39(1), E12E19.Google Scholar
Wiener, L., Viola, A., Kearney, J., et al. (2016). Impact of caregiving for a child with cancer on parental health behaviors, relationship quality, and spiritual faith: Do lone parents fare worse? Journal of Pediatric Oncology Nursing, 33(5), 378386.Google Scholar