Pediatric Oncology Providers' Perceptions of a Palliative Care Service: The Influence of Emotional Esteem and Emotional Labor

Szymczak, Julia E.; Schall, Theodore E.; Hill, Douglas L.; Walter, Jennifer K.; Parikh, Shefali; DiDomenico, Concetta; Feudtner, Chris

doi:10.1016/j.jpainsymman.2018.01.019

Cited by 38 publications

(48 citation statements)

References 30 publications

(27 reference statements)

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“…24,35,54,77 In three studies, healthcare professionals had access to either a specialist paediatric palliative care team or support from other colleagues, and this was viewed as beneficial for effective symptom management. 52,67,76 In one study, the involvement of a palliative care team was delayed by physicians, who were concerned about families readiness for palliative care, the association of 'palliative' with 'death' and the fear of negatively impacting the physician-family relationship. 67 Healthcare professional education, training, knowledge and experience.…”

Section: Barriers and Facilitators To Symptom Management Reported By mentioning

confidence: 99%

A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life

et al. 2020

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Background: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform the development of effective interventions. Aim: To investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life. Design: A mixed-methods systematic review and meta-analysis was undertaken (PROSPERO ID: CRD42019124797). Data sources: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were electronically searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data from patients, carers or healthcare professionals referring to barriers or facilitators to paediatric end-of-life symptom management. Studies underwent data extraction, quality appraisal, narrative thematic synthesis and meta-analysis. Results: A total of 64 studies were included (32 quantitative, 18 qualitative and 14 mixed-methods) of medium-low quality. Themes were generated encompassing barriers/facilitators experienced by carers (treatment efficacy, treatment side effects, healthcare professionals’ attitudes, hospice care, home care, families’ symptom management strategies) and healthcare professionals (medicine access, treatment efficacy, healthcare professionals’ demographics, treatment side effects, specialist support, healthcare professionals’ training, health services delivery, home care). Only one study included patients’ views. Conclusion: There is a need for effective communication between healthcare professionals and families, more training for healthcare professionals, improved symptom management planning including anticipatory prescribing, and urgent attention paid to the patients’ perspective.

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Section: Barriers and Facilitators To Symptom Management Reported By mentioning

confidence: 99%

A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life

et al. 2020

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“…Pediatric oncology providers in a recent survey [ 24 ] issued a highly favorable opinion about their institution’s PPC service and agreed that early consultation is ideal. However, they report formally consulting PPC is extremely difficult because of what the PPC symbolizes to families and the emotional labor that the oncology provider must manage in introducing them.…”

Section: Common Myths and Misconceptions In Pediatric Palliative Cmentioning

confidence: 99%

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Friedrichsdorf

Bruera

2018

Children

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Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary pediatric palliative care for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. Pediatric Palliative Care advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child’s quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children’s hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. This article addresses common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of pediatric palliative care program implementation.

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“…This anxiety is worsened by the fact that clinicians acknowledge that they received limited or no communication training in how to share bad news or empathize with an upset parent [31, 48, 51, 52]. Clinicians are also under considerable time pressure to see a certain number of patients and families each day which may both increase the cognitive biases mentioned above [72–74], reduce their ability to consider alternative approaches [16], and make them reluctant to initiate difficult conversations about palliative care that may take an unknown amount of time [61, 75, 76]. Each of these factors may increase the likelihood of an individual clinician postponing discussing palliative care with families.…”

Section: Discussionmentioning

confidence: 99%

“…However, many clinical teams have group norms about avoiding significant expressions of sorrow, and thus the topics which may elicit them, leading them to avoid discussion at the group level. Clinicians may maintain these norms because of their desire to retain composure professionally as well as their need during the clinical day to continue the fast-paced care of other patients with little to no time allotted to dwelling on these difficult situations [61]. Such norms can make it harder for individual team members to seek support when coping with negative emotions and may increase the risk for depression and burnout among clinicians.…”

Section: Discussionmentioning

confidence: 99%

A conceptual model of barriers and facilitators to primary clinical teams requesting pediatric palliative care consultation based upon a narrative review

et al. 2019

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BackgroundDespite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a conceptual model for why clinical teams delay discussing palliative care with parents.DiscussionBuilding on a prior model of parent regoaling and relevant research literature, we argue for a conceptual model of the challenges and facilitators a clinical team might face in shifting from a restorative-focused treatment plan to a plan that includes palliative aspects, resulting in a subspecialty palliative care referral.Like patients and families, clinicians and clinical teams may recognize that a seriously ill patient would benefit from palliative care and shift from a restorative mindset to a palliative approach. We call this transition “clinician regoaling”. Clinicians may experience inhibitors and facilitators to this transition at both the individual and team level which influence the clinicians’ willingness to consult subspecialty palliative care. The 8 inhibitors to team level regoaling include: 1) team challenges due to hierarchy, 2) avoidance of criticizing colleagues, 3) structural communication challenges, 4) group norms in favor of restorative goals, 5) diffusion of responsibility, 6) inhibited expression of sorrow, 7) lack of social support, 8) reinforcement of labeling and conflict. The 6 facilitators of team regoaling include: 1) processes to build a shared mental model, 2) mutual trust to encourage dissent, 3) anticipating conflict and team problem solving, 4) processes for reevaluation of goals, 5) sharing serious news as a team, 6) team flexibility.ConclusionsRecognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.

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Pediatric Oncology Providers' Perceptions of a Palliative Care Service: The Influence of Emotional Esteem and Emotional Labor

Cited by 38 publications

References 30 publications

A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life

A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

A conceptual model of barriers and facilitators to primary clinical teams requesting pediatric palliative care consultation based upon a narrative review

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