Experiences of Pediatric Oncology Patients and Their Parents at End of Life

Abstract

Improvement in pediatric palliative and end-of-life care has been identified as an ongoing research priority. The child and parent experience provides valuable information to guide how health care professionals can improve the transition to end of life and the care provided to children and families during the vulnerable period. The purpose of this systematic review was to describe the experience of pediatric oncology patients and their parents during end of life, and identify gaps to be addressed with interventions. A literature search was completed using multiple databases, including CINAHL, PubMed, and PsycInfo. A total of 43 articles were included in the review. The analysis of the evidence revealed 5 themes: symptom prevalence and symptom management, parent and child perspectives of care, patterns of care, decision making, and parent and child outcomes of care. Guidelines for quality end-of-life care are needed. More research is needed to address methodological gaps that include the pediatric patient and their sibling's experience.

Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature

“…Doing so could increase the number of clinicians able to provide general palliative care, providing children and families with access to holistic, person‐centered care within the context of the existing workforce shortage. In addition, a more robust workforce of subspecialty and tertiary PPC providers trained to meet the unique needs of children with advanced and terminal cancer could have profound effects on palliative care referrals and use . Examples of successful collaboration and integration of PPC programs and primary pediatric teams have been reported and could serve as examples for other programs .…”

“…In addition, a more robust workforce of subspecialty and tertiary PPC providers trained to meet the unique needs of children with advanced and terminal cancer could have profound effects on palliative care referrals and use. 37,42 Examples of successful collaboration and integration of PPC programs and primary pediatric teams have been reported and could serve as examples for other programs. 36,41 This, in conjunction with more adequate and consistent financing mechanisms, may increase the availability of PPC programs connected to pediatric oncology programs.…”

Nurses’ communication with dying children and their families in pediatric oncology: A literature review

“…The importance of parents' perspectives and preferences was evident in two of the studies that found parents have a significant role in providing optimum quality of care to children dying from cancer. The systematic review of evidence by Montgomery et al [9] regarding parents' experiences along with the quantitative study of [4] about parents' perspectives provides health professionals with an overall view of the critical importance of parental involvement in care planning and EOL decision making. Tomilson et al (2011) [10] reported that, despite healthcare professionals' advice, parents frequently preferred palliative chemotherapy in the care of their dying child because they hoped for both good quality of life and increase survival time.…”

“…Within these highly sensitive decisions, nurses must ensure effective communication, not only between the nurses and family but also facilitating clear communication between the parents and physicians that are built on insights into parents' beliefs and perspectives. [9] Nurses have the opportunity to assess and meet the needs of children and their parents during all phases of EOL, whether they are physical, emotional, or psychosocial in nature [4,9] One of the parental preferences measured by Hechler et al [4] was that 88% of the parents preferred their child to die at home. This desire does not seem to be well supported, based on the chart review of Zhukovsky et al [11] who reported that the location of death was not a focus documented by the care team.…”

“…Communication was discussed as a critical component to be used in pain management. [9,14] A child's pain is diffi-cult to assess. [14] Having knowledge regarding the developmental levels of children contributes to how nurses and other healthcare professionals effectively manage the child's pain.…”