What Information Do Parents Need When Facing End-of-life Decisions For Their Child? A Meta-synthesis Of Parental Feedback
Communication;Decision Making;Health Knowledge Attitudes Practice;Hope;Humans;Intensive Care Units Pediatric/organization & Administration;Needs Assessment;Parents/education;Parents/psychology;Terminal Care/methods;Terminal Care/psychology;Time Factors
BACKGROUND: The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their main source of information, they also turn to a variety of additional sources of written information in an attempt to source facts, discover solutions, and find hope. Much has been written about the needs of parents faced with end-of-life decisions for their child but little is known about the written information needs such parents have. Research in the adult intensive care context has shown that written resources impact positively on the understanding of medical facts, including diagnoses and prognoses, communication between families and healthcare professionals, and the emotional wellbeing of families after their relative's death. METHODS: A meta-synthesis of predominantly empirical research pertaining to features which assist or impede parental end-of-life decisions was undertaken to provide insight and guidance in our development of written resources (short print and online comprehensive version) for parents. RESULTS: The most prominently cited needs in the literature related to numerous aspects of information provision; the quantity, quality, delivery, and timing of information and its provision impacted not only on parents' ability to make end-of-life decisions but also on their emotional wellbeing. The meta-synthesis supports the value of written materials, as these provide guidance for both parents and healthcare professionals in pertinent content areas. CONCLUSIONS: Further research is required to determine the impact that written resources have on parental end-of-life decision-making and on parents' wellbeing during and after their experience and time in the hospital environment.
Xafis V; Wilkinson D; Sullivan J
Bmc Palliative Care
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).
<a href="https://doi.org/10.1186/s12904-015-0024-0" target="_blank" rel="noreferrer">10.1186/s12904-015-0024-0</a>
Pediatrician Ambiguity In Understanding Palliative Sedation At The End Of Life
Conscious Sedation/mt [methods]; Palliative Care/mt [methods]; Pediatrics/mt [methods]; Terminal Care/mt [methods]; Adult; Aged; Child; Female; Health Knowledge Attitudes Practice; Humans; Male; Middle Aged; Pediatrics/sn [statistics & Numerical Data]; Practice Patterns Physicians'/sn [statistics & Numerical Data]; Surveys And Questionnaires
CONTEXT: Palliative sedation is a means of relieving intractable symptoms at the end of life, however, guidelines about its use lack consistency. In addition, ethical concerns persist around the practice. There are reports of palliative sedation in the pediatric literature, which highlight various institutional perspectives. OBJECTIVES: This survey of 4786 pediatric providers sought to describe their knowledge of and current practices around pediatric palliative sedation. METHODS: Our survey was administered to pediatricians who care for children at the end of life. The survey assessed agreement with a definition of palliative sedation, as well as thoughts about its alignment with aggressive symptom management. Bivariate analyses using chi<sup>2</sup> and analysis of variance were calculated to determine the relationship between responses to closed-ended questions. Open-ended responses were thematically coded by the investigators and reviewed for agreement. RESULTS: Nearly half (48.6%) of the respondents indicated that the stated definition of palliative sedation "completely" reflected their own views. Respondents were split when asked if they viewed any difference between palliative sedation and aggressive symptom management: Yes (46%) versus No (54%). Open-ended responses revealed specifics about the nature of variation in interpretation. CONCLUSIONS: Responses point to ambiguity surrounding the concept of palliative sedation. Pediatricians were concerned with a decreased level of consciousness as the goal of palliative sedation. Respondents were split on whether they view palliative sedation as a distinct entity or as one broad continuum of care, equivalent to aggressive symptom management. Institutional-based policies are essential to clarify acceptable practice, enable open communication, and promote further research.
Henderson C M; FitzGerald M; Hoehn K S; Weidner N
American Journal Of Hospice And Palliative Medicine
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).
10.1177/1049909115609294
Pediatric Palliative Care Pilot Curriculum: Impact Of "pain Cards" On Resident Education
Adult; Communication; Curriculum; Female; Health Knowledge Attitudes Practice; Hospitals Pediatric/organization & Administration; Humans; Internship And Residency/methods; Male; Pain Management; Pain Measurement; Palliative Care; Pediatrics/education; Pilot Projects
Palliative Care Curriculum; Palliative Care Education; Pediatric Palliative Care; Pediatric resident; Pocket cards; Resident education
BACKGROUND:
Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved comfort and/or knowledge with palliative care principles. The purpose of this study was to test a pocket card educational intervention regarding resident knowledge and comfort with palliative care principles.
METHODS:
Pocket reference cards were created to deliver fundamentals of pediatric palliative care to resident learners; didactics and case studies emphasized principles on the cards. Self-reported comfort and objective knowledge were measured before and after the curriculum among residents.
RESULTS:
Of 32 post-graduate year 2 (PGY2) residents, 23 (72%) completed the pre-test survey. The post-test was completed by 14 PGY2 residents (44%) and 16 of 39 PGY3/4 residents (41%). There was improvement in comfort with communication, as well as pain and symptom management among the residents. Knowledge of palliative care principles improved in part, with only a few survey questions reaching statistical significance. 100% of respondents recommended the cards be provided to their colleagues.
CONCLUSION:
This longitudinal curriculum, designed specifically for pediatric residents, was built into an existing training program and proved to be popular, feasible, and effective at improving comfort with basic palliative care principles.
Barnett MD; Maurer SH; Wood GJ
American Journal Of Hospice And Palliative Medicine
2016
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).
DOI: 10.1177/1049909115590965