Mothers Caring for a Child at End of Life: A Systematic Review

Authors

  • Shahad Hafez Batterjee Medical College
  • Julia Snethen University of Wisconsin-Milwaukee, College of Nursing, The United States
  • Julie Ellis University of Wisconsin-Milwaukee, College of Nursing, The United States
  • Murad Taani University of Wisconsin-Milwaukee, College of Nursing, The United States
  • Emmanuel Ngui University of Wisconsin-Milwaukee, School of Public Health, The United States
  • Abdullah A. Baothman King Saud Ben Abdulaziz University for Health Science, Saudi Arabia

DOI:

https://doi.org/10.30994/jnp.v5i1.143

Keywords:

end of life, end of life care, mothers, children, parents

Abstract

Background: A mother feels complete when she fulfills her role in protecting her child from harm.  If a child is diagnosed with a terminal illness and reaches End of Life (EOL), the mother’s life is affected negatively.  The mother is affected mentally, psychologically, and physically because her child is dying.
Purpose: Explore the recent studies that focused on experiences of mothers caring for a child receiving End of Life Care (EOLC) at home or a healthcare facility.
Methods: An electronic search was done in multiple databases, including the University of Wisconsin-Milwaukee Library, PsycINFO, PubMed, CINAHL, and Academic Search Complete. 
The included studies were published within the past five years, studies about EOL/ EOLC, hospice care, pediatric care, quantitative, qualitative, and mixed methods studies. Thematic synthesis following PRISMA guidelines.  
Results: Four themes emerged from the thematic synthesis.  The main themes included decision making challenges, communication with healthcare professionals, parents’ support system, and grief. Parents were included in most studies. However, the number of mothers exceeded the number of fathers.  Some researchers mentioned that there was no difference between their participants (most participants were Caucasian).  
Conclusion: There is limited information available about children and their family members’ experiences at EOL/ EOLC in Saudi Arabia as has been studied in other countries.  Based on this systematic review, more studies are needed related to children at EOL in Saudi Arabia.        

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References

American Psychological Association (2018). End-of-life care fact sheet. APA. http://www.apa.org/pi/aging/programs/eol/end-of-life-factsheet.aspx

Arruda-Colli, M. N. F. D., Lima, R. A. G. D., Perina, E. M., & Santos, M. A. D. (2016). Child cancer recurrence: a study about the mother's experience. Psicologia USP, 27(2), 307-314.

Atout, M., Hemingway, P., & Seymour, J. (2017). The experience of decision making in the care of children with palliative care needs: the experiences of Jordanian mothers. Comprehensive Child and Adolescent Nursing, 40(4), 240-256. 10.1080/24694193.2017.1330371

Baughcum, A. E., Fortney, C. A., Winning, A. M., Shultz, E. L., Keim, M. C., Humphrey, L. M., ... & Gerhardt, C. A. (2017). Perspectives from bereaved parents on improving end of life care in the NICU. Clinical Practice in Pediatric Psychology, 5(4), 392. http://dx.doi.org/10.1037/cpp0000221

Chamsi-Pasha, H., & Albar, M. A. (2016). Ethical dilemmas at the end of life: Islamic perspective. Journal of Religion and Health, 56(2), 400-410.

Creswell, J. W., & Creswell, J. D. (2017). Research design: qualitative, quantitative, and mixed methods approaches. Sage Publications.

De Andrade, M. L., Mishima-Gomes, F. K. T., & Barbieri, V. (2017). Recreating life: the grief of the mothers and the maternal experience. Revista Psicologia-Teoria e Prática, 19(1). http://dx.doi.org/10.15348/1980-6906/psicologia.v19n1p33-43

De Vos, M. A., Bos, A. P., Plötz, F. B., van Heerde, M., de Graaff, B. M., Tates, K., ... & Willems, D. L. (2015). Talking with parents about end-of-life decisions for their children. Pediatrics, peds-2014. 10.1542/peds.2014-1903?

Gothwal, V. K., Bharani, S., & Reddy, S. P. (2015). Measuring coping in parents of children with disabilities: a Rasch model approach. PloS One, 10(3), e0118189. 10.1371/journal.pone.0118189

Haley, J. M., & Walker, G. A. (2016). Discovering the strength of parents whose children are at end of life. Journal of Hospice & Palliative Nursing, 18(2), 139-148. 10.1097/NJH.0000000000000225

Hui, D., Nooruddin, Z., Didwaniya, N., Dev, R., De La Cruz, M., Kim, S. H., ... & Bruera, E. (2014). Concepts and definitions for “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care”: a systematic review. Journal of Pain and Symptom Management, 47(1), 77-89. http://dx.doi.org/10.1016/j.jpainsymman.2013.02.021

Laasko, H., & Paunonen-Ilmonen, J. (2002). Mothers’ experience of social support following the death of a child. Journal of Clinical Nursing, 11, 176–185. 10.1046/j.1365- 2702.2002.00611.x

Lou, H. L., Mu, P. F., Wong, T. T., & Mao, H. C. (2015). A retrospective study of mothers’ perspectives of the lived experience of anticipatory loss of a child from a terminal brain tumor. Cancer nursing, 38(4), 298-304.

Mangeli, M., Tirgari, B., Cheraghi, M. A., & Rayyani, M. (2018). Exploring the experiences of Iranian adolescent mothers about the maternal role: a qualitative study. Electronic physician, 10(5), 6812. http://dx.doi.org/10.19082/6812

Ministry of Health (2018). About the ministry. MOH. www.moh.gov.sa

Moher, D., Liberati, A., Tetzlaff, J., Altman, D., G., The PRISMA Group (2009). Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med 6(7): e1000097. 10.1371/journal.pmed1000097. http://prisma-statement.org/documents/PRISMA%202009%20checklist.pdf

National Cancer Institute (2018). NCI dictionary of cancer terms. NCI. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/end-of-life-care

National Institute of Health (2018). National institute on aging. NIH. https://www.nia.nih.gov/health/end-of-life

Noble, H., Smith, J. (2015) Issues of validity and reliability in qualitative research. Evidence Based Nursing, 18, (2): 34-35. http://eprints.hud.ac.uk/id/eprint/23995/1/SmithIssues.pdf

Ohs, J. E., Trees, A. R., & Gibson, C. (2015). Holding on and letting go: making sense of end-of-life care decisions in families. Southern Communication Journal, 80(5), 353-364. 10.1080/1041794X.2015.1081979

Pease, K., & McMillin, S. E. (2018). Practice Concepts and Innovations for Pediatric End-of-Life Care by the Interdisciplinary Care Team. Journal of social work in end-of-life & palliative care, 14(2-3), 143-152. 10.1080/15524256.2018.1493628

Rahman, S., & De Souza, J. (2014). Disenfranchised grief following a non-fatal road traffic incident: A case study exploring a mother’s experience. International emergency nursing, 22(3), 169-171. http://dx.doi.org/10.1016/j.ienj.2013.09.001

Russell, J. (2015). Effects of constraints and consequences on plan complexity in conversations about end-of-life care. Journal of Social Work in End-of-Life & Palliative Care, 11(3-4), 323-345. 10.1080/15524256.2015.1111286

Widger, K., Tourangeau, A. E., Steele, R., & Streiner, D. L. (2015). Initial development and psychometric testing of an instrument to measure the quality of children’s end-of-life care. BMC Palliative Care, 14(1), 1.

Youngblut, J. M., Brooten, D., Glaze, J., Promise, T., & Yoo, C. (2017). Parent grief 1–13 months after death in neonatal and pediatric intensive care units. Journal of Loss and Trauma, 22(1), 77-96. http://dx.doi.org/10.1080/15325024.2016.1187049

Zimmermann, K., Bergstraesser, E., Engberg, S., Ramelet, A. S., Marfurt-Russenberger, K., Von der Weid, N., ... & Cignacco, E. (2016). When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child’s end-of life care. BMC Palliative Care, 15(1), 30. 10.1186/s12904-016-0098-3

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Published

2021-10-01

How to Cite

Hafez, S., Snethen, J. ., Ellis, J., Taani, M., Ngui, E. ., & Baothman, A. A. (2021). Mothers Caring for a Child at End of Life: A Systematic Review. Journal Of Nursing Practice, 5(1), 36–54. https://doi.org/10.30994/jnp.v5i1.143

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