Palliative Care of Children With Brain Tumors

Abstract

Participants: Twenty-five parents of 17 children who had died of brain tumors. Intervention: Parents participated in 3 semistructured focus group interviews. Main Outcome Measures: Themes identified through thematic analysis of interview transcripts. Results: Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview. Conclusion: The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families.

The Preferred Place of Last Days: Results of a Representative Population-Based Public Survey

“…3 Although much has been made of the high cost of dying in hospitals and nursing homes, 4 home-based dying often involves significant out-of-pocket costs in addition to difficult tasks and responsibilities for family caregivers. 5,6 Most EOL care in the home is provided by family caregivers, often with little assistance from others, including formal home care providers. 5,7,8 Regardless, a shift from hospital to home-based death and dying is occurring in Canada and elsewhere, notably Britain and the United States.…”

The influence of spirituality in pediatric cancer management: a systematic review

“…[16] For example, patients with cancer who are able to develop a sense of peace and equanimity in their cancer experience tend to have better quality of life [13,27] and better psychological health. [13,26,27,28,29] In children, spirituality has been defined as the ability to derive personal value and transcend beyond the self through relationships with others.…”

“…[37,19] Therefore, pediatric cancer experience may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with cancer and for early anticipatory guidance provided for families. [16] Spirituality helping family cope with the pediatric cancer experience Despite increasing survivorship, childhood cancer is nonetheless still a very traumatic phenomenon. To the parents it could be like to live through and bear witness to their child actively dying.…”

“…To the parents it could be like to live through and bear witness to their child actively dying. [16] Thus, parents describe the diagnosis and treatment of child with cancer as one of the most stressful times in their lives. [38,39,40,41,42,43] The spiritual beliefs possessed by the parents appeared to offer a great deal of comfort to them while dealing with their child's illness.…”

Preferences for end-of-life care for children with cancer

“…A 2010 study of 25 parents whose children died from brain tumours found that parents use hope as a coping mechanism. 9 It is therefore difficult to balance hope for a cure with hope for the comfort and dignity of the child.…”