Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care
child; Humans; Pediatrics; Communication; Family/psychology; Professional-Family Relations; paediatrics; Palliative care; Advance Care Planning; Delphi technique; Stakeholder Participation; prompt list; Reminder Systems/instrumentation
BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care. AIM: To develop a prompt list suitable for paediatric palliative care. DESIGN: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups. PARTICIPANTS: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service. RESULTS: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list. CONCLUSION: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.
Ekberg S; Herbert A; Johns K; Tarrant G; Sansone H; Yates P; Danby S; Bradford NK
Palliative Medicine
2020
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/10.1177/0269216319888988" target="_blank" rel="noreferrer noopener">10.1177/0269216319888988</a>
Principles of a paediatric palliative care consultation can be achieved with home telemedicine
We compared the records of paediatric palliative consultations undertaken face-to-face, with telemedicine consultations undertaken in patients’ homes. A convenience sample of consecutive paediatric palliative care patients was identified from the hospital's palliative care database. A total of 100 consultations was reviewed (50 telemedicine consultations during home visits and 50 face-to-face consultations) according to 14 established principles and components of a paediatric palliative care consultation. In the telemedicine group there was a higher proportion of patients in a stable condition (58% vs 7%), and a lower proportion of patients in terminal phase (2% vs 17%). Discussion about pain and anorexia were significantly more common in the telemedicine group. Discussion about follow up was significantly more common in the telemedicine group (86% vs 56%), whilst resuscitation planning was more common in deteriorating patients receiving inpatient care. All other components and principles of a palliative care consultation were documented equally regardless of method of consultation. The findings confirm that palliative consultations via telemedicine are just as effective as face-to-face consultations in terms of the documented components of the consultation.
2014-10
Bradford NK; Armfield N; Young J; Herbert A; Mott C; Smith AC
Journal Of Telemedicine And Telecare
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/10.1177/1357633X14552370" target="_blank" rel="noreferrer">10.1177/1357633X14552370</a>
Components and Principles of a Pediatric Palliative Care Consultation: Results of a Delphi Study
guideline
Abstract Background: Pediatric palliative care is a distinct specialty that requires input from pediatric and palliative medicine specialists to provide comprehensive high-quality care. Consultations undertaken early in a child's illness trajectory, when end-of-life care is not anticipated to be required, enables relationships to be established and may enhance the quality of care provided. Objective: To define optimal components of an early pediatric palliative care consultation. Design: Consensus of an expert group was sought in a five-round Delphi study. Setting/Participants: Based on the literature and existing standards for specialist palliative care, components of an early pediatric palliative care consultation were derived. In rounds 2 and 3, experts from around Australia participated in online surveys to review and prioritize the components and principles. Consensus of survey items was determined by defined criteria. A flowchart was developed in the fourth round and the final round involved review and refinement of the flowchart by the expert group. Results: Nineteen experts participated and prioritized 34 components and principles in the first survey round, and 36 statements in the second survey round. There was consensus from all participants that the first priority of a consultation was to establish rapport with the family, and examples of how to achieve this were defined. Other components of a consultation included: establishing the family's understanding of palliative care; symptom management; an emergency plan; discussion of choices for location of care, and a management plan. Components considered suitable to defer to later consultations, or appropriate to address if initiated by family members, included: spiritual or religious issues; discussion around resuscitation and life-sustaining therapies; end-of-life care; and the dying process. Conclusion: We have provided the first published framework from expert consensus that defines the components and principles of an early pediatric palliative care consultation. This framework will provide guidance for clinical practice as well as being useful for education and research in this area.
2014-07
Bradford NK; Herbert A; Mott C; Armfield N; Young J; Smith A
Journal Of Palliative Medicine
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/10.1089/jpm.2014.0121" target="_blank" rel="noreferrer">10.1089/jpm.2014.0121</a>
Discussing death: Making end of life implicit or explicit in paediatric palliative care consultations
Objective: To consider whether and how family members and clinicians discuss end of life during paediatric palliative care consultations.Methods: Nine naturally occurring paediatric palliative care consultations were video recorded and analysed using conversation analytic methods.Analysis: Focusing on three consultations in which end of life was treated as a certain outcome, analysis explored ways in which end of life was made either implicit or explicit within these consultations. Our analysis suggests that end of life was made explicit when: 1) ancillary to the current focus of discussion, 2) in relation to someone else's child, or 3) specifically relevant to the local context of the discussion. More commonly, in all other instances in the data, end of life was made implicit during discussions relating to this matter.Conclusion: This preliminary research indicates that the local context of a conversation can influence how end of life is mentioned and discussed.Practice Implications: Clinicians often are encouraged to promote honest and 'open' discussions about end of life. Our findings show that it is not necessary to explicitly mention end of life in order to discuss it.
Ekberg Stuart; Danby Susan; Rendle-Short J; Herbert A; Bradford NK; Yates P
Patient Education & Counseling
2019
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.pec.2018.08.014" target="_blank" rel="noreferrer noopener">10.1016/j.pec.2018.08.014</a>