Parent and Provider Perspectives of a Hospital-Based Bereavement Support Program in Pediatric Palliative Care
bereavement; bereavement support; grief; palliative therapy; questionnaire; article; Bereavement; child; cross-sectional study; expectation; female; human; human experiment; major clinical study; male; Palliative Care; pediatric hospital; program impact
Abstract Context: Bereavement is an individuated, nuanced experience, and its expression is different for each parent who has cared for a dying child. Evidence highlights support is valuable to navigate this loss. Objectives: To evaluate a Bereavement Support Program from the perspectives of both families and service providers. Methods: A cross-sectional study design explored the experiences and perspectives of the benefits of various program components. Respondents were asked about accessing program components, their expectations, and parents were asked to rate the impact of program components on their grief on a scale from one, (no impact) to 100 (positive impact). Space for free text was provided throughout for additional feedback. Setting/ participants: The survey was distributed through mailing lists of parents known to the service, referring service providers, and advertised in the program newsletter. Results: One hundred two respondents completed the survey and provided detailed comments about their experiences. Most interactions and program components were reported helpful by both parents and service providers. Parents (N = 60) reported a positive impact on grief across all program components (median impact on grief range 81-98, Interquartile range 68.5-99). There were, however, a considerable number of respondents who were unaware of some components. Conclusion: Bereavement care to navigate the devastating loss of a child is of paramount importance and can offer significant and beneficial resources for families. Findings have supported service development in a major tertiary paediatric hospital facilitating improved access for families, particularly for those in regional and rural locations.
Gundry A; Elvidge N; Donovan L; Bunker K; Herbert A; Bradford N
Journal of Pain and Symptom Management
2023
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.jpainsymman.2023.02.002" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.002</a>
Location of end-of-life care of children with cancer: A systematic review of parent experiences
Objective: To synthesize existing qualitative research exploring the experiences of parents caring for children with cancer during the end-of-life phase, and the factors that influence parental decision-making when choosing the location of end-of-life care and death for their child. Result(s): This review included 15 studies of 460 parents of 333 children and adolescents who died from progressive cancer. Where reported, the majority (58%) of children died at home or in a hospital (39%), with only a small fraction dying in a hospice. Factors impacting decision-making for the location of care included the quality of communication and the quality of care available. Themes related to choosing home for end-of-life care and death included honoring the child's wishes, the familiarity of home, and parents' desire to be their child's primary carer. Preference for the location of death in the hospital included trust in hospital staff, practical logistics, and the safety of the hospital environment. Copyright © 2022 Wiley Periodicals LLC.
Noyes M; Herbert A; Moloney S; Irving H; Bradford N
Pediatric Blood and Cancer
2022
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/https://doi.org/10.1002/pbc.29621" target="_blank" rel="noreferrer noopener">https://doi.org/10.1002/pbc.29621</a>
How can advance care planning tools help young people's voices be heard?
child; pediatrics; female; male; human; review; advance care planning; palliative therapy; human experiment; skill; legal aspect; pediatrician; conversation; tension; voice
The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences, enabling health-care professionals to ensure they are aligned with their planned course of treatment. This process, often undertaken within the context of the child's family, empowers children to participate in decisions and experience the dignity of self-determination. It also facilitates an increased understanding between the CYP and those involved in their care. The objectives of this paper are to highlight the importance of these conversations for paediatricians and identify barriers, both real and perceived, that may prevent them from engaging with a CYP about their preferences for future care including focusing more on discussion with the parents, and concern about or not having the skills to engage the child in such sensitive conversations. Triggers that can prompt clinicians to undertake ACP are also discussed. A further complexity is that after seeking their perspective, it may become apparent that the CYP may hold different views and perspectives to their parents and/or clinician. This review article will especially examine elements of end-of-life conversations that are critical to support the important goal of listening to the voice of the CYP. This includes considerations around timing, legal aspects, ethical tensions that arise when amplifying a child's voice, clinician/team-member roles, clinical process considerations, and the use of specific interventions and ACP tools to facilitate these conversations with CYP. Copyright © 2022 Paediatrics and Child Health Division (The Royal Australasian College of Physicians).
Trang J; Herbert A; Sansom-Daly UM
Journal of Paediatrics and Child Health
2022
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/10.1111/jpc.16095" target="_blank" rel="noreferrer noopener">10.1111/jpc.16095</a>
Attending to child agency in paediatric palliative care consultations: Adults' use of tag questions directed to the child
Child agency; Conversation analysis; Pediatric palliative care; Tag questions
Children's agency in their own lives is increasingly recognised as important, including within paediatric health care. The issue of acknowledging child agency is complex in the context of paediatric palliative care, where children have serious and complex conditions that often impact their ability to verbally communicate with others. This study explores how clinicians and parents/guardians direct talk towards a child patient when they are present in a consultation. Conversation analysis methods were used to examine 74 video-recorded paediatric palliative care consultations. Detailed turn-by-turn examination of the recorded consultations identified the recurrent use of a practice described by linguists as a 'tag question', which follows some statement (e.g. 'he loves that, don't ya'). Both clinicians and parents/guardians often directed these tag questions towards the child patient. Analysis demonstrated how these tag questions: (1) validated the child's epistemic authority over what was being said and (2) made a child's response a possible, but not necessary, next action. The findings are discussed in relation to the sociology of child agency and how this agency is acknowledged and displayed within and through social interaction. This research provides direct evidence of children's competence as informants about their own symptoms. Copyright © 2022 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL (SHIL).
Ekberg K; Ekberg S; Weinglass L; Herbert A; Rendle-Short J; Bluebond-Langner M; Yates P; Bradford N; Danby S
Sociology of Health and Illness
2022
<a href="http://doi.org/10.1111/1467-9566.13437" target="_blank" rel="noreferrer noopener">10.1111/1467-9566.13437</a>
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>
Analysis of health administration data to inform health service planning for paediatric palliative care
chronic conditions; hospital care; paediatrics
BACKGROUND: Health service planning in paediatric palliative care is complex, with the diverse geographical and demographic characteristics adding to the challenge of developing services across different nations. Accurate and reliable data are essential to inform effective, efficient and equitable health services. AIM: To quantify health service usage by children and young people aged 0-21 years with a life-limiting condition admitted to hospital and health service facilities in Queensland, Australia during the 2011 and 2016 calendar years, and describe the clinical and demographic characteristics associated with health services usage. DESIGN: Retrospective health administrative data linkage of clinical and demographic information with hospital admissions was extracted using International Statistical Classification of Diseases and Related Health Problems, Tenth Revision Australian Modification (ICD-10-AM) diagnostic codes. Data were analysed using descriptive statistics. SETTING/PARTICIPANTS: Individuals aged 0-21 years with a life-limiting condition admitted to a Queensland Public Hospital and Health Service or private hospital. RESULTS: Hospital admissions increased from 17 955 in 2011 to 23 273 in 2016, an increase of 5318 (29.6%). The greatest percentage increase in admissions were for those aged 16-18 years (58.1%, n=1050), and those with non-oncological conditions (36.2%, n=4256). The greatest number of admissions by ICD-10-AM chapter for 2011 and 2016 were by individuals with neoplasms (6174, 34.4% and 7206, 31.0% respectively). Overall, the number of admissions by Indigenous children and young people increased by 70.2% (n=838). CONCLUSIONS: Administrative data are useful to describe clinical and demographic characteristics and quantify health service usage. Available data suggest a growing demand for health services by children eligible for palliative care that will require an appropriate response from health service planners.
Bowers AP; Bradford N; Chan RJ; Herbert A; Yates P
BMJ Supportive & Palliative Care
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/10.1136/bmjspcare-2020-002449" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2020-002449</a>
Neonatal palliative care: A single site clinical audit
cause of death; newborn; terminal care; major clinical study; retrospective study; newborn death; hospital admission; conference abstract; human; child; female; male; social work; palliative therapy; clinical audit; speech; bereavement support; physiotherapy; gold; music therapy; nursing staff; seashore
Background: Best practice, palliative and end-of-life care (EOLC) enhances symptom management and quality-of-life for individuals who are palliative and dying, and their families. Although Gold Coast Health (GCH) has a dedicated, interdisciplinary palliative care service (including allied health) for adults, no equivalent local neonatal/paediatric service exists, highlighting inequity of access to care based on age. This project investigated allied health service usage of neonates requiring palliative and EOLC and their families in GCH. Method(s): A retrospective clinical audit was conducted to map the patient journey of all neonatal deaths within GCH between September 2013 and May 2018. Variables included: number, place and cause of death, diagnoses, number/reasons for hospital admissions, frequency and type of allied health interventions received. Result(s): 66 neonatal deaths were identified. 62 deaths occurred at GCUH, 2 elsewhere, and 2 at home. Of the 127 interventions carried out (excluding daily nursing staff) 72 were provided by acute service allied health professionals. Proportion of AH interventions included Social Work (85%), Physiotherapy (11%), Speech Pathology (3%), and Music Therapy (1%). Only 1 neonate was registered with QPPCS, however 20 received palliation. Full data will be presented. Conclusion(s): GCH requires a funded, appropriately resourced, interdisciplinary palliative care and bereavement service for neonates and children to ensure our families are provided with equitable access to evidence based, local services across the continuum of care (including in-the-home).
Gill K; Weir K; Delaney A; Moloney S; Herbert A; Noyes M; Hong T; Broadbent A; Scuffham P; Mickan S
Journal of Paediatrics and Child Health
2019
<a href="http://doi.org/10.1111/jpc.14409" target="_blank" rel="noreferrer noopener">10.1111/jpc.14409</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>
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
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Journal Article
<a href="http://doi.org/10.1089/jpm.2014.0121" target="_blank" rel="noreferrer">10.1089/jpm.2014.0121</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>
Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: a qualitative systematic review protocol
Communication; Critical Illness/px [Psychology]; Palliative Care/px [Psychology]; Parents/px [Psychology]; Professional-Family Relations; adolescent; Adult; Child; Female; Health Personnel/px [Psychology]; Humans; infant; Male; Newborn; Preschool; Qualitative Research; Young Adult
REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes of this review, "healthcare users" will be taken to include children who have life-limiting conditions and their families. The question to be addressed is:What are healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions? BACKGROUND: The prospect of the death of a child from an incurable medical condition is harrowing, yet finding a way to discuss this prospect is crucial to maximize the quality of life for such children and their families. High-quality communication is well recognized as a core skill health care professionals need to maximize the quality of care they provide. This skill is valued by service users, who consistently rate it as one of the highest priorities for the care they receive. Evidence suggests, however, that healthcare professionals can feel ill-equipped or uncomfortable communicating with and about such children. Therefore, it is important to understand what represents high-quality communication and what is involved in accomplishing this within pediatric palliative care.In recent decades there has been an increased focus on providing palliative care for children who have life-limiting conditions. These are conditions for which no cure is available and for which the probable outcome is premature death. Palliative care may also be appropriate for children who have life-threatening conditions; these are conditions where there is not only a high probability of premature death but also a chance of long-term survival into adulthood Although pediatric palliative care is underpinned by the same philosophy as adult palliative care, children who have life-limiting conditions and their families have particular needs that distinguish them from users of adult palliative care. For example, at a physical level children are more likely than adults to have non-malignant conditions that follow trajectories in which children oscillate between feeling relatively well and acutely unwell. The social dynamic of their care is also radically different, particularly given the role of parents or guardians in making surrogate decisions about their child's care. Such factors warrant considering pediatric palliative care as distinct from palliative care more generally.Although the particular circumstances of children who have life-limiting conditions have led to development of pediatric palliative care, the particular provisions of this care differs among countries. One aspect of variation is the age range of patients. Pediatric palliative care is usually provided to neonates, infants, children, adolescents and young adults, but international variations in the definitions of these age ranges, particularly for adolescents and young adults, means pediatric palliative care is provided to different age groups in different countries. This review therefore adopts a pragmatic rather than an age-based definition of a pediatric palliative care, considering all studies relating to service users who are being cared for by pediatric rather than adult healthcare services.In catering for the unique needs of children who have life-limiting conditions and their families, pediatric palliative care aims to achieve pain and symptom management, enhanced dignity and quality of life, and psychosocial and spiritual care. It also seeks to incorporate care for patients' broader families and facilitating access to appropriate services and support. High-quality communication is crucial for achieving these aims. It enables healthcare users and providers to make decisions that underpin the care that is provided and the quality of the life that is possible for patients and their families.Although both users and providers recognize the value of high-quality communication with and about children who have life-limiting conditions, this does not mean that these stakeholders necessarily share the same perspective of what constitutes high-quality communication and the best way of accomplishing this. Focusing on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions, the present review will explore the subjective impact of professionals' communication on the people for whom they provide care. It may be necessary to consider a range of contextual factors to understand healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. For instance, age, developmental stage, cognitive capacity, emotional and social strengths, and family dynamics can influence a child's level of involvement in discussions about their condition and care.13,28,29,35 Although there are factors that appear more consistent across the range of pediatric palliative care users, such as parents' preferences for being treated by healthcare professionals as partners in making decisions about the care of their child, there is not always such consistency.29 Nor is it clear whether such findings can be generalized across different cultural contexts.13,36 In appraising existing research, this systematic review will therefore consider the relationship between the context of individual studies and their reported findings. Background The primary aim of this review is to identify, appraise and synthesize existing qualitative evidence of healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. The review will consider relevant details of these findings, particularly whether factors like age are relevant for understanding particular experiences of communication. An outcome of this review will be the identification of best available qualitative evidence that can be used to inform professional practice, as well as an identification of priorities for future research in pediatric palliative care. Background A preliminary search in MEDLINE and CINAHL found primary studies exploring healthcare users' experiences of aspects of communicating with healthcare professionals about children who have life-limiting conditions. A search was also conducted for existing systematic reviews in PubMed, CINAHL, EMBASE, PsycINFO, the Cochrane Database of Systematic Reviews, the JBI Database of Systematic Reviews and Implementation Reports, and PROSPERO. No systematic reviews on this topic were found.
2015-11
Ekberg S; Bradford N; Herbert A; Danby S; Yates P
Jbi Database Of Systematic Reviews And Implementation Reports
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="http://doi.org/10.11124/jbisrir-2015-2413" target="_blank" rel="noreferrer">10.11124/jbisrir-2015-2413</a>
A Pilot Study Of The Effectiveness Of Home Teleconsultations In Paediatric Palliative Care
Caregivers/px [psychology]; Palliative Care/mt [methods]; Pediatrics/mt [methods]; Quality Of Life; Remote Consultation/ut [utilization]; Adult; Caregivers; Cohort Studies; Female; Health Services Accessibility; Humans; Male; Middle Aged; Outcome And Process Assessment (health Care); Palliative Care; Palliative Care/st [standards]; Patient Satisfaction; Pediatrics/st [standards]; Pilot Projects; Prospective Studies; Referral And Consultation; Rural Population
We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families were allocated, non-randomly, to a control group (usual care) or an intervention group (usual care with the addition of home telehealth consultations). The primary outcome measure was quality-of-life score. Caregivers were surveyed for up to 99 days following recruitment. A descriptive analysis of the quality-of-life data showed no differences between caregivers in the two groups. However, important lessons were learnt regarding factors which influence the success of studies in this population group, and the domains of caregiver quality-of-life that warrant intervention. Palliative care is complex, and multiple interventions and supports are required if care is to be managed at home. Home telehealth consultations are a feasible and acceptable means of facilitating a palliative care consultation which can reduce the burden on families at a distressing time.
Bradford N; Young J; Armfield NR; Bensink ME; Pedersen LA; Herbert A; Smith AC
Journal Of Telemedicine & Telecare
2012
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).
10.1258/jtt.2012.gth103
Preparing Pediatric Healthcare Professionals For End-of-life Care Discussions: An Exploratory Study
Communication; End Of Life; Palliative Care; Pediatric
Henderson A; Young J; Herbert A; Bradford N; Pedersen LA
Journal Of 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).
10.1089/jpm.2016.0367
Affording Opportunities To Discuss Deterioration In Paediatric Palliative Care Consultations: A Conversation Analytic Study
Child; Communication; Family Management; Only Child; Paediatrics; Palliative Care; Prognosis; Referral And Consultation
OBJECTIVE: Discussing 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. METHODS: 9 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. FINDINGS: The 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. CONCLUSIONS: These 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.
Ekberg S; Danby S; Herbert A; Bradford N; Yates P
Bmj Supportive & Palliative Care
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).
10.1136/bmjspcare-2016-001130
Paediatric Palliative Care And Intellectual Disability-a Unique Context
Family-centred Care; Intellectual Disability; Paediatrics; Palliative Care; Quality Of Life
BACKGROUND: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. METHOD: This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. RESULTS: As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. CONCLUSION: A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required.
Duc J K; Herbert A; Heussler H S
Journal Of Applied Research In Intellectual Disabilities
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).
<a href="https://doi.org/10.1111/jar.12389" target="_blank" rel="noreferrer">10.1111/jar.12389</a>
Quality Of Care Collaborative For Paediatric Palliative Care In Australia (quocca)
Australia; Palliative Therapy; Anxiety; Child; Clinical Trial; Diagnosis; Dyspnea; Education; Family Study; Female; Human; Major Clinical Study; Male; Nausea; Nurse; Pain; Patient Referral; Questionnaire; Seizure; Staff; Symptom; Telehealth; Terminal Care
Background: Geography and population distribution present challenges to the care of children with life-limiting conditions (LLC) within Australia. Children and young people have unique needs in relation to the provision of palliative care within Australia. Objectives: This project aims to improving the quality of care provided to children in close proximity to their home through educational initiatives. This is primarily delivered through "pop-up" education. 'Pop-up' education usually occurs (face-face or telehealth) when a specialist service is building capacity within a child and family's local community and creating a paediatric network. The education provided can be specific to symptom management, end of life care, physical aspects of patient care according to their individualised need and diagnosis and psychosocial needs. The setting is usually in a non-metropolitan location, and the education is provided in a timely manner in relation to the patient's needs. Design/Method: The project is a collaboration of the specialist paediatric palliative care services in each state of Australia. The project is being evaluated using pre and post intervention questionnaires completed by participants in the 'pop-up' educational initiatives. Evaluationwill consider factors such as knowledge, confidence and efficacy around providing care for children with LLC. Results: Forty-six "pop-up" education sessions had been delivered between June 2015 and November 2016. This has included each state and territory of Australia. There have been 507 participants in pop-up education sessions (92 hours of education). Nurses represented the largest group of attendees.Medical and allied health staff also attended demonstrating the need for education to applicable to an inter-disciplinary audience. To date there has been an improvement in the knowledge and confidence of participants to:* manage symptoms (pain, nausea, dyspnoea, seizures, and anxiety), * manage a new referral, * be aware of available resources* be confident in how to help a family prepare for a child's death* confidence in the provision of medications to children's receiving palliative care (including subcutaneous delivery). Conclusion: A collaboration of paediatric palliative care services providing education in a planned and co-ordinated way shows promise in increasing capacity for paediatric palliative care within Australia, and should assist achieving goals of the National Palliative Care Strategy 2010.
Herbert A; Irving H; Pedersen LA; Baggio S; Delaney A; Donovan L; McLarty A; Duc J; Slater P; Johnson S; Trethewie S; Ryan S; Hynson J; Duffield J; Fleming S; Heywood M; Phillips M; Momber S; Burr C
Pediatric Blood And Cancer
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).
10.1002/pbc.26591
Adequacy Of Palliative Care In A Single Tertiary Neonatal Unit
End Of Life Care; Palliative Care; Death; Neonatal; Perinatal Death; Infant; Parents; End Of Life Care; Child; Palliative Care; Narcotics; Hospice Care; Pediatrics
Aim: End-of-life care remains within the scope of practice of all neonatal units. There is a paucity of literature regarding the evidence-base for palliative care interventions in the perinatal or neonatal population (Balaguer).
Little is published regarding neonatal end-of-life care in Australia (Wilkinson). This study aimed to characterise the end-of-life care provided in an Australian tertiary neonatal centre, where paediatric palliative care was accessible via a consultative service.
Methods: This retrospective cohort study examined indicators of quality palliative care provided to forty-six infants born within a thirty-month period from January 2012 to June 2014. Included infants were liveborn, admitted to the Royal Brisbane and Women's Hospital at some time in their life and died prior to one year of age. Infants were excluded if there was no opportunity for palliative care. Indicators of quality palliative care assessed included communication, resuscitation planning, preferred location of death, symptom management, symptom management plan, multi-disciplinary team approach, caring for carers, memory making, spiritual care and bereavement care. Interventions were characterised using descriptive statistics.
Results: The most common causes of death were congenital abnormality (37%) and complications of extreme prematurity (22%). Very high proportions of infants and families had family meetings (100%), social worker involvement (100%), memory making opportunities (100%) and discussion of autopsy (91%). Opiates were prescribed to 78% in the last day of life; most (89%) were administered intravenously. For those prescribed opiates, the median parenteral morphine daily equivalent was 290 mcg/kg/day (interquartile range = 317) in the last 24 hours of life. Antenatal resuscitation planning for fetuses with a prenatal diagnosis (9%), discussion of preferred location of death (9%), communication with general practitioners (7%) and access to specialised bereavement care (3%) were infrequently provided. Palliative care consultation was sought infrequently (n = 4; 8%), precluding formal statistical comparison with the usual neonatal care cohort. The relative number of instances where indicators of quality palliative care were met was generally greater when palliative care was consulted.
Conclusions: At the time of this study, the neonatal unit was not meeting all of the end-of-life care needs of infants and their families. Care was more comprehensive when the palliative care service was consulted.
Gilmour D; Davies M; Herbert A
Journal Of Paediatrics And Child Health
2016
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<a href="https://onlinelibrary.wiley.com/doi/full/10.1111/jpc.13245_16">10.1111/jpc.13245_16</a>