Parents' experiences of pediatric palliative care and the impact on long-term parental grief.
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
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
van der Geest IMM; Darlington Anne-Sophie E; Streng IC; Michiels EMC; Pieters R; van den Heuvel-Eibrink MM
Journal Of Pain And Symptom Management
2014
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).
Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2013.07.007" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.07.007</a>
Parents' Faith and Hope during the Pediatric Palliative Phase and the Association with Long-Term Parental Adjustment
BACKGROUND: The loss of a child is associated with an increased risk for developing psychological problems. However, studies investigating the impact of parents' faith and hope for a cure during the palliative phase on long-term parental psychological functioning are limited. OBJECTIVE: The study's objective was to explore the role of faith and hope as a source of coping and indicator of long-term parental adjustment. METHODS: Eighty-nine parents of 57 children who died of cancer completed questionnaires retrospectively, exploring faith, hope, and sources of coping, and measuring parents' current level of grief and depression. RESULTS: For 19 parents (21%) faith was very important during the palliative phase. The majority of parents remained hopeful for a meaningful time with their child (n=68, 76%); a pain-free death (n=58, 65%); and a cure (n=30, 34%). Their child (n=70, 79%) was parents' main source of coping. Twelve parents (14%) suffered from traumatic grief, and 22 parents (25%) showed symptoms of depression. Parents' faith was not associated with less long-term traumatic grief (OR=0.86, p=0.51) or symptoms of depression (OR=0.95, p=0.74), and parents' hope for a cure was not related to more long-term traumatic grief (OR=1.07, p=0.71) or symptoms of depression (OR=1.12, p=0.47). CONCLUSIONS: Faith was important for a minority of parents and was not associated with less long-term traumatic grief or symptoms of depression. The majority of parents remained hopeful. Hope for a cure was not associated with more long-term traumatic grief or symptoms of depression.
2015-05
van der Geest Ivana MM; van den Heuvel-Eibrink MM; Falkenburg N; Michiels EMC; van Vliet L; Pieters R; Darlington Anne-Sophie E
Journal Of Palliative Medicine
2015
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).
Journal Article
<a href="http://doi.org/10.1089/jpm.2014.0287" target="_blank" rel="noreferrer">10.1089/jpm.2014.0287</a>
Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners
Cancer Epidemiology; General Practitioner; Palliative Therapy; Child; Controlled Study; Cross-sectional Study; Death; Distress Syndrome; Doctor Patient Relation; Fatigue; Human; Human Versus Animal Comparison; Major Clinical Study; Nonhuman; Pain; Panic; Powerlessness; Questionnaire; Sadness; Symptom; Thermometer
Context: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. Objectives: The objective of this study was to explore the perspectives of GPs who care for children with advanced-stage cancer in a home-based setting. Methods: In this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death, and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). Results: A total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients. The median interval between the child's death and completing the questionnaire was seven years. The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%). Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's death, and they rated their own distress level as relatively high during the terminal phase (median score 6, range 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. Conclusion: In general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among health care professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death. Copyright _ 2017 American Academy of Hospice and Palliative Medicine.
van der Geest IMM; Bindels PJE; Pluijm SMF; Michiels EMC; van der Heide A; Pieters R; Darlington ASE; van den Heuvel-Eibrink MM
Journal Of Pain And Symptom Management
2017
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2016.09.012" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.09.012</a>