Family Perspectives on the Quality of Pediatric Palliative Care

Contro, Nancy; Larson, Judith; Scofield, Sarah; Sourkes, Barbara M.; Cohen, Harvey J.

doi:10.1001/archpedi.156.1.14

Cited by 405 publications

(411 citation statements)

References 21 publications

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“…[17][18][19][20] In our study, practitioners verbally dominated family meetings talking substantially more than actorfamily members (70 vs 30%). Our results using realistic enactments are strikingly consistent with the findings of McDonagh et al, 21 who reported that in actual end-of-life conferences in adult intensive care units (ICUs), clinicians spoke 71% and family members 29% of the time.…”

Section: Discussionmentioning

confidence: 52%

Analysis of enacted difficult conversations in neonatal intensive care

et al. 2009

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Objective: To analyze the communicative contributions of interdisciplinary professionals and family members in enacted difficult conversations in neonatal intensive care.Study Design: Physicians, nurses, social workers, and chaplains (n ¼ 50) who attended the Program to Enhance Relational and Communication Skills, participated in a scenario of a preterm infant with severe complications enacted by actors portraying family members. Twenty-four family meetings were videotaped and analyzed with the Roter Interaction Analysis System (RIAS).Result: Practitioners talked more than actor-family members (70 vs 30%). Physicians provided more biomedical information than psychosocial professionals (P<0.001), and less psychosocial information than nurses, and social workers and chaplains (P<0.05; P<0.001). Social workers and chaplains asked more psychosocial questions than physicians and nurses (MD ¼ P<0.005; RN ¼ P<0.05), focused more on family's opinion and understanding (MD ¼ P<0.01; RN ¼ P<0.001), and more frequently expressed agreement and approval than physicians (P<0.05). No differences were found across disciplines in providing emotional support. Conclusion:Findings suggest the importance of an interdisciplinary approach and highlight areas for improvement such as using silence, asking psychosocial questions and eliciting family perspectives that are associated with family satisfaction.

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Section: Discussionmentioning

confidence: 52%

Analysis of enacted difficult conversations in neonatal intensive care

et al. 2009

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“…Parents wanted to receive honest information about their infant's condition and prognosis, even if the news was not good, which is similar to previous research. 11,13,14,23 They wanted to be involved in decision-making for their infant, and wanted their decisions to be respected by medical staff. If parents felt involved in the decision-making for their infant, they appeared to have a more positive perception of their infant's end-of-life care, regardless of how long their infant lived.…”

Section: Discussionmentioning

confidence: 99%

“…10 These data suggest that palliative care consultation may enhance the end-of-life care for newborns, but there are still questions about what constitutes an excellent end-of-life care. Although several studies have asked the parents of children who have died about their perspectives on their child's end-of-life care, 11,12,13 these studies were not specific to parents who had lost an infant. One study that did ask parents who had an infant die in a neonatal intensive care unit 14 found that parents wanted clear information about their child's condition, and wanted to be involved in decisions that were made about their child's care.…”

Section: Introductionmentioning

confidence: 99%

Infant end-of-life care: the parents' perspective

Pierucci²,

et al. 2007

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Objective: The purpose of this study was to identify factors important to parents in their infant's end-of-life care.Study Design: Participants were parents (n ¼ 19 families) whose infant (less than 1 year old) had died. Parents completed the Revised Grief Experience Inventory (RGEI) and a semi-structured interview regarding their infant's end-of-life care. Interviews were rated using the Post-Death Adaptation Scale (PDAS).Result: Parents scored significantly lower than the normative sample on the RGEI, and PDAS scores suggested that these parents were adapting positively. Parent interviews identified the aspects of care that were important to parents: honesty, empowered decision-making, parental care, environment, faith/trust in nursing care, physicians bearing witness and support from other hospital care providers. Conclusion:Results of this study suggest that parents can effectively cope following the death of an infant and the medical staff can do much to improve the end-of-life care for infants and their families.

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“…5 professionals are recognized as determinants of providing high-quality paediatric palliative care [14][15][16] .…”

Section: Accepted Manuscriptmentioning

confidence: 99%

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

Geest

Bindels

Pluijm

et al. 2017

Journal of Pain and Symptom Management

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ContextAlthough 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. ObjectivesTo explore the perspectives of GPs who care for children with advanced-stage cancer in a homebased setting. MethodsIn 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). ResultsA 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 7 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 M A N U S C R I P T A C C E P T E D ACCEPTED MANUSCRIPT3 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. ConclusionIn general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among healthcare 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.

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Family Perspectives on the Quality of Pediatric Palliative Care

Abstract: There is a need to improve pediatric palliative care. Recurring themes in the family interviews suggest useful issues to consider in the development of a palliative care program.

Cited by 405 publications

References 21 publications

Analysis of enacted difficult conversations in neonatal intensive care

Analysis of enacted difficult conversations in neonatal intensive care

Infant end-of-life care: the parents' perspective

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

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