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Article ; Online: Knowledge, attitudes and beliefs about paediatric palliative care.

Scott, Hannah May / Coombes, Lucy / Braybrook, Debbie / Harðardóttir, Daney / Gaczkowska, Inez / Harding, Richard

2023 Volume 12, Issue 1, Page(s) 10–12

Language	English
Publishing date	2023-01-10
Publishing country	China
Document type	Editorial
ZDB-ID	2828544-X
ISSN	2224-5839 ; 2224-5839
ISSN (online)	2224-5839
ISSN	2224-5839
DOI	10.21037/apm-22-1326
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: 'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition.

Bristowe, Katherine / Braybrook, Debbie / Scott, Hannah M / Coombes, Lucy / Harðardóttir, Daney / Roach, Anna / Ellis-Smith, Clare / Bluebond-Langner, Myra / Fraser, Lorna / Downing, Julia / Murtagh, Fliss / Harding, Richard

Palliative medicine

2024 Volume 38, Issue 3, Page(s) 379–388

Abstract: Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to ...

Abstract	Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. Aim: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. Design: Positioned within a Setting/participants: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. Results: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions. Conclusion/discussion: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.
MeSH term(s)	Humans ; Child ; Adolescent ; Qualitative Research ; Palliative Care/psychology ; Hospice Care ; Language ; Communication
Language	English
Publishing date	2024-03-04
Publishing country	England
Document type	Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163241233977
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Article ; Online: What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders.

Scott, Hannah May / Coombes, Lucy / Braybrook, Debbie / Harðardóttir, Daney / Roach, Anna / Bristowe, Katherine / Bluebond-Langner, Myra / Fraser, Lorna K / Downing, Julia / Farsides, Bobbie / Murtagh, Fliss Em / Ellis-Smith, Clare / Harding, Richard

Palliative medicine

2024 Volume 38, Issue 4, Page(s) 471–484

Abstract: Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is ... ...

Abstract	Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.
MeSH term(s)	Adult ; Child ; Humans ; Adolescent ; Cross-Sectional Studies ; Palliative Care ; Qualitative Research ; Caregivers ; Outcome Assessment, Health Care
Language	English
Publishing date	2024-03-13
Publishing country	England
Document type	Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163241234797
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Article ; Online: Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers.

Coombes, Lucy / Braybrook, Debbie / Harðardóttir, Daney / Scott, Hannah May / Bristowe, Katherine / Ellis-Smith, Clare / Fraser, Lorna K / Downing, Julia / Bluebond-Langner, Myra / Murtagh, Fliss Em / Harding, Richard

Palliative medicine

2024 , Page(s) 2692163241248735

Abstract: Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. ...

Abstract	Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. Aim: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. Design: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. Setting/participants: Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. Results: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. Conclusion: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.
Language	English
Publishing date	2024-05-06
Publishing country	England
Document type	Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163241248735
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Article ; Online: Inter-Rater Reliability of the Phase of Illness Tool in Pediatric Palliative Care.

Burke, Kimberley / Coombes, Lucy H / Petruckevitch, Ann / Anderson, Anna-Karenia

The American journal of hospice & palliative care

2020 Volume 37, Issue 10, Page(s) 837–843

Abstract: Background: Phase of Illness is used to describe the stages of a patient's illness in the palliative care setting. Categorization is based on individual needs, family circumstances, and the adequacy of a care plan. Substantial (κ = .67) and moderate (κ = ...

Abstract	Background: Phase of Illness is used to describe the stages of a patient's illness in the palliative care setting. Categorization is based on individual needs, family circumstances, and the adequacy of a care plan. Substantial (κ = .67) and moderate (κ = .52) inter-rater reliability is demonstrated when categorizing adults; however, there is a lack of similar studies in pediatrics. Objective: To test the inter-rater reliability of health-care professionals when assigning pediatric palliative care patients to a Phase of Illness. Furthermore, to obtain user views on phase definitions, ease of assignment, feasibility and acceptability of use. Method: A prospective cohort study in which up to 9 health-care professionals' independently allocated 80 pediatric patients to a Phase of Illness and reported on their experiences. This study took place between June and November 2017. Results: Professionals achieved a moderate level of agreement (κ = 0.50). Kappa values per phase were as follows: stable = 0.63 (substantial), unstable = 0.26 (fair), deteriorating = 0.45 (moderate), and dying = 0.43 (moderate). For the majority of allocations, professionals report that the phase definitions described patients very well (76.1%), and they found it easy to assign patients (73.5%). However, the unstable phase caused the most uncertainty. Conclusion: The results of this study suggest Phase of Illness is a moderately reliable, acceptable, and feasible tool for use in pediatric palliative care. Current results are similar to those found in some adult studies. However, in a quarter of cases, users report some uncertainty in the application of the tool, and further study is warranted to explore whether suggested refinements improve its psychometric properties.
MeSH term(s)	Adult ; Child ; Hospice and Palliative Care Nursing ; Humans ; Palliative Care ; Pediatrics ; Prospective Studies ; Reproducibility of Results
Language	English
Publishing date	2020-03-19
Publishing country	United States
Document type	Journal Article
ZDB-ID	1074344-3
ISSN	1938-2715 ; 1049-9091
ISSN (online)	1938-2715
ISSN	1049-9091
DOI	10.1177/1049909120912674
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Article ; Online: How do person-centered outcome measures enable shared decision-making for people with dementia and family carers?-A systematic review.

Aworinde, Jesutofunmi / Ellis-Smith, Clare / Gillam, Juliet / Roche, Moïse / Coombes, Lucy / Yorganci, Emel / Evans, Catherine J

Alzheimer's & dementia (New York, N. Y.)

2022 Volume 8, Issue 1, Page(s) e12304

Abstract: Objectives: To identify published evidence on person-centered outcome measures (PCOMs) used in dementia care and to explore how PCOMs facilitate shared decision-making and improve outcomes of care. To build a logic model based on the findings, depicting ...

Abstract	Objectives: To identify published evidence on person-centered outcome measures (PCOMs) used in dementia care and to explore how PCOMs facilitate shared decision-making and improve outcomes of care. To build a logic model based on the findings, depicting linkages with PCOM impact mechanisms and care outcomes. Design: Mixed-methods systematic review. We searched PsycINFO, MEDLINE, CINAHL, and ASSIA from databases and included studies reporting experiences and/or impact of PCOM use among people with dementia, family carers, and/or practitioners. Groen Van de Ven's model of collaborative deliberation informed the elements of shared decision-making in dementia care in the abstraction, analysis, and interpretation of data. Data were narratively synthesized to develop the logic model. Setting: Studies were conducted in long-term care, mixed settings, emergency department, general primary care, and geriatric clinics. Participants: A total of 1064 participants were included in the review. Results: Ten studies were included. PCOMs can facilitate shared decision-making through "knowing the person," "identifying problems, priorities for care and treatment and goal setting," "evaluating decisions", and "implementation considerations for PCOM use." Weak evidence on the impact of PCOMs to improve communication between individuals and practitioners, physical function, and activities of daily living. Conclusions: PCOMs can enable shared decision-making and impact outcomes through facilitating collaborative working between the person's network of family and practitioners to identify and manage symptoms and concerns. The constructed logic model demonstrates the key mechanisms to discuss priorities for care and treatment, and to evaluate decisions and outcomes. A future area of research is training for family carers to use PCOMs with practitioners.
Language	English
Publishing date	2022-06-06
Publishing country	United States
Document type	Journal Article ; Review
ZDB-ID	2832891-7
ISSN	2352-8737 ; 2352-8737
ISSN (online)	2352-8737
ISSN	2352-8737
DOI	10.1002/trc2.12304
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Article ; Online: Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children's research involvement group and expert item generation.

Coombes, Lucy / Harðardóttir, Daney / Braybrook, Debbie / Scott, Hannah May / Bristowe, Katherine / Ellis-Smith, Clare / Fraser, Lorna K / Downing, Julia / Bluebond-Langner, Myra / Murtagh, Fliss Em / Harding, Richard

Palliative medicine

2023 Volume 37, Issue 10, Page(s) 1509–1519

Abstract: Background: There is no validated outcome measure for use in children's palliative care outside sub-Saharan Africa. Stakeholders must be involved in the development of such measures to ensure face and content validity.: Aim: To gain expert ... ...

Abstract	Background: There is no validated outcome measure for use in children's palliative care outside sub-Saharan Africa. Stakeholders must be involved in the development of such measures to ensure face and content validity. Aim: To gain expert stakeholder consensus on items for inclusion in a paediatric palliative care outcome measure to establish face and content validity. Design: This study was conducted in two phases following Rothrock and COSMIN guidance on patient-reported outcome measure development. Phase 1: Three-round modified Delphi survey to establish consensus on priority items. Phase 2: Item generation meeting with key stakeholders to develop initial measure versions. A young person's advisory group was also consulted on priority outcomes. Setting and participants: Delphi survey: Parents and professionals with experience of caring for a child with a life-limiting condition. Young person's advisory group: young people age 10-20 years. Item generation meeting: bereaved parents, academics and clinicians. Results: Phase 1: Delphi survey ( Conclusions: This study highlights the importance and feasibility of involving key stakeholders in PROM item generation, as important differences were found in the priority outcomes identified by children, parents and professionals.
MeSH term(s)	Adult ; Humans ; Child ; Adolescent ; Young Adult ; Palliative Care ; Consensus ; Delphi Technique ; Hospice and Palliative Care Nursing ; Outcome Assessment, Health Care
Language	English
Publishing date	2023-10-18
Publishing country	England
Document type	Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163231205126
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Article ; Online: Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members.

Coombes, Lucy / Harðardóttir, Daney / Braybrook, Debbie / Roach, Anna / Scott, Hannah / Bristowe, Katherine / Ellis-Smith, Clare / Downing, Julia / Bluebond-Langner, Myra / Fraser, Lorna K / Murtagh, Fliss E M / Harding, Richard

The patient

2023 Volume 16, Issue 5, Page(s) 473–483

Abstract: Background: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects ... ...

Abstract	Background: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities. Objectives: The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members. Method: A semi-structured qualitative interview study seeking the perspectives of children with life-limiting conditions, their siblings and parents on measure design was conducted. Participants were purposively sampled and recruited from nine UK sites. Verbatim transcripts were analysed using framework analysis. Results: A total of 79 participants were recruited: 39 children aged 5-17 years (26 living with a life-limiting condition; 13 healthy siblings) and 40 parents (of children aged 0-17 years). Children found a short recall period and a visually appealing measure with ten questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings. Children emphasised the importance of completing the measure alongside interactions with a healthcare professional to enable them to talk about their responses. While parents assumed that electronic completion methods would be most feasible and acceptable, a small number of children preferred paper. Conclusions: This study demonstrates that children with life-limiting conditions can engage in communicating preferences regarding the design of a patient-centred outcome measure. Where possible, children should be given the opportunity to participate in the measure development process to enhance acceptability and uptake in clinical practice. Results of this study should be considered in future research on outcome measure development in children.
MeSH term(s)	Child ; Humans ; Adolescent ; Family ; Parents ; Palliative Care ; Health Personnel ; Health Status
Language	English
Publishing date	2023-05-23
Publishing country	New Zealand
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2466680-4
ISSN	1178-1661 ; 1178-1653
ISSN (online)	1178-1661
ISSN	1178-1653
DOI	10.1007/s40271-023-00627-w
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Article ; Online: The use of rapid onset fentanyl in children and young people for breakthrough cancer pain.

Coombes, Lucy / Burke, Kimberley / Anderson, Anna-Karenia

Scandinavian journal of pain

2017 Volume 17, Page(s) 256–259

Abstract: Background and aims: No published studies have looked at the dosing and use of rapid onset fentanyl preparations in children. The primary aim of this study was to assess whether there is a correlation between effective dose of rapid onset fentanyl and ... ...

Abstract	Background and aims: No published studies have looked at the dosing and use of rapid onset fentanyl preparations in children. The primary aim of this study was to assess whether there is a correlation between effective dose of rapid onset fentanyl and background oral morphine equivalent analgesia in children less than 18 years old. Secondary objectives included establishing whether there is a correlation between effective dose of rapid onset fentanyl and age and weight. Reported side effects were also reviewed. Methods: This study is a retrospective case note review of all children less than 18 years old who received rapid onset fentanyl products in a tertiary paediatric oncology centre in England between 2010 and 2015. Correlations were analysed using Spearman's correlation coefficient as data was non-parametric. Results: Data on 26 children (5-17 yrs; 13-100kg) was analysed. The most common diagnosis in children being given rapid onset fentanyl products was a solid tumour (84.6%). Eleven children used sublingual tablets, 17 used lozenges and one used a fentanyl nasal spray (three patients used two different preparations). The only significant correlation found was between dose of fentanyl lozenge and weight (r Conclusions: Fentanyl lozenges seem to be safe and well tolerated in children as young as five years old, weighing as little as 13kg. Results suggest that children should always be started on the lowest available dose of chosen preparation and that this dose should be titrated according to response. This study demonstrates that there is no correlation between background opioid dose and effective dose of rapid onset fentanyl in children. This mirrors findings of similar studies in adults. There was a strong correlation between effective dose of fentanyl lozenge and weight. This may be in part due to clinicians being more inclined to increase fentanyl lozenge doses as the child is in control of when they have had enough medication. In contrast, buccal tablets are absorbed quickly and the child always receives the full dose, making clinicians more reluctant to titrate the dose. Implications: This article presents initial evidence for feasibility and tolerability of fentanyl lozenges in children as young as five years old, who are on relatively low doses of background opioids. This could be of interest to clinicians who are looking for alternatives to oral opioids to manage breakthrough pain in children with cancer.
MeSH term(s)	Administration, Oral ; Adolescent ; Analgesics, Opioid/administration & dosage ; Breakthrough Pain/drug therapy ; Cancer Pain/drug therapy ; Child ; Child, Preschool ; Dose-Response Relationship, Drug ; England ; Fentanyl/administration & dosage ; Humans ; Medical Oncology ; Pain Measurement ; Pediatrics ; Retrospective Studies
Chemical Substances	Analgesics, Opioid ; Fentanyl (UF599785JZ)
Language	English
Publishing date	2017-08-10
Publishing country	Germany
Document type	Journal Article ; Observational Study
ZDB-ID	2515451-5
ISSN	1877-8879 ; 1877-8860
ISSN (online)	1877-8879
ISSN	1877-8860
DOI	10.1016/j.sjpain.2017.07.010
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Article ; Online: Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study.

Scott, Hannah May / Coombes, Lucy / Braybrook, Debbie / Roach, Anna / Harðardóttir, Daney / Bristowe, Katherine / Ellis-Smith, Clare / Downing, Julia / Murtagh, Fliss Em / Farsides, Bobbie / Fraser, Lorna K / Bluebond-Langner, Myra / Harding, Richard

Palliative medicine

2023 Volume 37, Issue 6, Page(s) 856–865

Abstract: Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended ... ...

Abstract	Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer. Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions. Design: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis. Setting/participants: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children's hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity. Results: One hundred six participants were interviewed: 26 children (5-17 years), 53 family members (parents/carers of children 0-17 years and siblings (5-17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care. Conclusions: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families.
MeSH term(s)	Humans ; Child ; Adolescent ; Child, Preschool ; Cross-Sectional Studies ; Palliative Care ; Hospice Care ; Family ; Qualitative Research
Language	English
Publishing date	2023-03-28
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163231165101
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