Parents' experiences of pediatric palliative care and the impact on long-term parental grief.

Title

Parents' experiences of pediatric palliative care and the impact on long-term parental grief.

Creator

van der Geest IMM; Darlington Anne-Sophie E; Streng IC; Michiels EMC; Pieters R; van den Heuvel-Eibrink MM

Publisher

Journal Of Pain And Symptom Management

Date

2014

Subject

Cross-Sectional Studies; Female; Humans; Male; Palliative Care; Adult; Middle Aged; Communication; Multivariate Analysis; Continuity of Patient Care; Children; retrospective studies; Neoplasms/therapy; cancer; Grief; Parents/psychology; Pediatrics; Palliative Care/psychology; parental grief; Surveys and Questionnaires; symptom management

Description

CONTEXT: Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems. OBJECTIVES: To explore parents' perceptions of the interaction with health care professionals (communication, continuity of care, and parental involvement) and symptom management during the pediatric palliative phase, and to investigate the influence on long-term grief in parents who lost a child to cancer. METHODS: A total of 89 parents of 57 children who died of cancer between 2000 and 2004 participated in this retrospective cross-sectional study by completing a set of questionnaires measuring grief (Inventory of Traumatic Grief), parents' perceptions of the interaction with health care professionals (communication, continuity of care, and parental involvement), and symptom management during the palliative phase. Care was assessed on a five point Likert scale (1=disagree and 5=agree). RESULTS: Parents highly rated communication (4.6+/-0.6), continuity of care (4.3+/-0.6), and parental involvement (4.6+/-0.7) during the palliative phase. Parents' most often reported physical and psychological symptoms of their child during the palliative phase were fatigue (75%), pain (74%), anxiety to be alone (52%), and anger (48%). Higher ratings of parents on communication (beta=-9.08, P=0.03) and continuity of care (beta=-11.74, P=0.01) were associated with lower levels of long-term parental grief. The severity of the child's dyspnea (beta=2.96, P=0.05), anxiety to be alone (beta=4.52, P<0.01), anxiety about the future (beta=5.02, P<0.01), anger (beta=4.90, P<0.01), and uncontrolled pain (beta=6.60, P<0.01) were associated with higher levels of long-term parental grief. Multivariate models combining the interaction with health care professionals and symptom management showed a significant influence of both aspects on long-term parental grief. CONCLUSION: Both interaction with health care professionals, especially communication and continuity of care, and symptom management in children dying of cancer are associated with long-term parental grief levels.
2014-06

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

1043-1053

Issue

6

Volume

47

Citation

van der Geest IMM; Darlington Anne-Sophie E; Streng IC; Michiels EMC; Pieters R; van den Heuvel-Eibrink MM, “Parents' experiences of pediatric palliative care and the impact on long-term parental grief.,” Pediatric Palliative Care Library, accessed July 29, 2021, https://pedpalascnetlibrary.omeka.net/items/show/15046.

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