Affording opportunities to discuss deterioration in paediatric palliative care consultations: a conversation analytic study

2017 ◽  
Vol 10 (2) ◽  
pp. e13-e13 ◽  
Author(s):  
Stuart Ekberg ◽  
Susan Danby ◽  
Anthony Herbert ◽  
Natalie K Bradford ◽  
Patsy Yates
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Self Report ◽  
Palliative Care Specialist ◽  
Communicative Practices ◽  
Paediatric Palliative Care ◽  
Care Specialist ◽  
Self Report Data ◽  
Limiting Condition

ObjectiveDiscussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is restricted to indirect forms of evidence such as self-report data from clinicians and families. This study directly explores how discussions about deterioration are managed within actual paediatric palliative care consultations.Methods9 consultations were video recorded in an Australian paediatric palliative care service. Each consultation involved the same paediatric palliative care specialist. Conversation analysis was used to identify and explore recurrent ways in which discussions about deterioration came to be realised.FindingsThe study identified two communicative practices used by a paediatric palliative care specialist that afforded opportunities to discuss deterioration: (1) soliciting the family's agenda for the consultation; (2) initiating and maintaining topics where discussing deterioration is a relevant possibility. Across these different practices, a common feature was indirect initiation of discussions about deterioration. This approach made such discussions possible, but without mandating or even suggesting that such discussion must occur.ConclusionsThese communicative practices balance the benefit of discussing deterioration against a recognised importance of allowing discussions to be directed by a child's family. This was achieved by creating opportunities for discussing deterioration, without making such discussions necessary.

scholarly journals The First Step to Initiate Pediatric Palliative Care: Identify Patient Needs and Cooperation of Medical Staff

Healthcare ◽  
2022 ◽  
Vol 10 (1) ◽  
pp. 127
Author(s):  
Su Hyun Bae ◽  
Yeo Hyang Kim
Keyword(s):  
Palliative Care ◽  
Medical Staff ◽  
Care Service ◽  
Care Center ◽  
Palliative Care Service ◽  
Disease Diagnosis ◽  
Pediatric Palliative Care ◽  
Number Of Patients ◽  
Palliative Care Services ◽  
Limiting Condition

Few Korean hospitals had experience in pediatric palliative care. Since the beginning of the national palliative care project, interest in pediatric palliative care has gradually increased, but the establishment of professional palliative care is still inadequate due to a lack of indicators. This study aimed to find considerations in the process of initiating palliative care services. The general and clinical characteristics of 181 patients aged less than 24 years who were registered at the pediatric palliative care center from January 2019 to August 2021 were evaluated. Life-limiting condition group 1 had the largest number of patients. The primary need for palliative care was psychological and emotional support, followed by information sharing and help in communication with the medical staff in decision-making processes. Seventy-two patients were technologically dependent, with one to four technical supports for each patient. The registration of patients with cancer increased with time, and the time from disease diagnosis to consultation for pediatric palliative care service was significantly reduced. In conclusion, before starting pediatric palliative care, it is necessary to understand the needs of patients and their families and to cooperate with medical staff.

Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions

2021 ◽  
pp. 082585972110467
Author(s):  
Komal G. Tewani ◽  
Pooja A. Jayagobi ◽  
Suresh Chandran ◽  
Amudha J. Anand ◽  
Edwin W. H. Thia ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Holistic Care ◽  
Baseline Survey ◽  
Care Plans ◽  
Care Specialist ◽  
Care Package ◽  
Advance Care ◽  
Perinatal Palliative Care

Background: Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. Aim: To develop a service providing individually tailored holistic care during pregnancy, birth, postnatal and bereavement period. Methods: Following a baseline survey of neonatologists and discussions with key stakeholders we launched the Perinatal Palliative service at the KK Women's and Children's hospital, Singapore in January 2017. The multidisciplinary team, led by a Palliative care specialist comprised of Obstetricians, Neonatologists, nurses and medical social workers. The Birth defect clinic referred parents with antenatally diagnosed ‘Lethal’ fetal conditions. The team checked the understanding and the decision making process of parents and initiated and finalized advance care plans. The service also embraced deserving postnatal referrals upon request. Results: A total of 41 cases were seen from January 2017 to December 2019. Of these, 26/41(63%) were referred antenatally and had completed advance care plans. 18/41 (44%) died during or shortly after birth and 10/41(24%) continue to survive and are supported by the community palliative team. During this time a workflow was formulated and modified based on parent and team feedback. Conclusion: Awareness of the service has increased over the years and a clear workflow has been formulated. Advance care plans are prepared and documented before birth so as to enable service teams on board to provide well timed pertinent care. Feedbacks from parents about this service were positive.

Referral to a specialist paediatric palliative care service in oncology patients

2010 ◽  
Vol 56 (4) ◽  
pp. 677-680 ◽  
Author(s):  
Lorna K. Fraser ◽  
Michael Miller ◽  
Patricia A. McKinney ◽  
Roger C. Parslow ◽  
Richard G. Feltbower
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Oncology Patients ◽  
Paediatric Palliative Care

scholarly journals Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care

2019 ◽  
Vol 34 (3) ◽  
pp. 291-299 ◽  
Author(s):  
Stuart Ekberg ◽  
Anthony Herbert ◽  
Kristi Johns ◽  
Gabrielle Tarrant ◽  
Holly Sansone ◽  
...  
Keyword(s):  
Palliative Care ◽  
Delphi Study ◽  
Healthcare Professionals ◽  
Care Service ◽  
Family Members ◽  
Palliative Care Service ◽  
Future Research ◽  
Paediatric Palliative Care ◽  
Question Prompt List ◽  
Question Prompt

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.

Paediatric palliative care delivered by an adult palliative care service

2006 ◽  
Vol 20 (4) ◽  
pp. 433-437 ◽  
Author(s):  
Norma O’Leary ◽  
J Flynn ◽  
A MacCallion ◽  
E Walsh ◽  
Regina McQuillan
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Paediatric Palliative Care

Paediatric palliative care: the role of an adult palliative care service

1995 ◽  
Vol 9 (2) ◽  
pp. 166-167 ◽  
Author(s):  
Ilora Finlay ◽  
Regina McQuillan ◽  
David Webb
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Paediatric Palliative Care

scholarly journals Hearing the voices of children diagnosed with a life-threatening or life-limiting illness and their parents’ accounts in a palliative care setting: A qualitative study

2021 ◽  
pp. 026921632110002
Author(s):  
Estera Ciobanu ◽  
Nancy Preston
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Care Service ◽  
Death And Dying ◽  
Palliative Care Service ◽  
Diagnosis And Prognosis ◽  
Parents And Children ◽  
Palliative Care Setting ◽  
Life Threatening ◽  
Limiting Condition

Background: Exploring children’s experiences of a life-threatening or life-limiting diagnosis is essential in offering appropriate care for them. There have been few studies examining these and they are often from the parent’s perspective. Even if adults are frequently unwilling to share information with children, they become aware of their diagnosis and prognosis. The theory of awareness contexts provided a theoretical framework through which it can be understood what children knew about their condition. Aim: To advance the understanding of the experiences of children with a life-threatening or life-limiting condition. Design: A qualitative study using dyadic interviews and thematic analysis. Setting/participants: Ten children between 14 to 17 years old with a life-threatening or life-limiting illness who were supported by a palliative care service in Romania. Interviews were also undertaken with their mothers. Results: Interview data demonstrated that there was a gap in the child’s experience and understanding of their condition compared to their parents. The data produced six major themes: awareness of the illness, death and dying, the spiritual response to illness, the emotional response to illness, striving for normality and independence and coping strategies. The study showed that children can read subtle cues or they may talk with other children to learn about their illness when information is not openly available to them. Conclusions: Children in the study often know more about their condition than their parents realised. Using this understanding, healthcare professionals can advise parents and children about how to communicate with one another which would enable the children to give voice to their thoughts, emotions and experiences.

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