Publications by authors named "L Coombes"
Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital.
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- - Palliative care for children is crucial but underutilized; this study investigates factors affecting access and referrals for such care.
- - A scoping review analyzed 195 articles on barriers and facilitators to referrals, identifying influences at individual, interpersonal, organizational, community, and societal levels.
- - While numerous barriers to pediatric palliative care are documented, the interventions aimed at improving access are less thoroughly explored, with many initiatives occurring mainly at the organizational level.
Article Synopsis
- - The Children's Palliative Outcome Scale (C-POS) is being developed using best practices in outcome measure development, with a focus on cognitive testing to ensure the tool is clear and relevant for its intended users.
- - A study involved cognitive interviews with children aged 5-17 with life-limiting conditions and their parents/carers, where adjustments were made to the C-POS to improve its comprehensibility and inclusivity, particularly for non-verbal children.
- - The results suggest that cognitive interviewing improved the validity and acceptability of the C-POS, indicating it can be effectively used in routine practice for assessing the needs of children with life-limiting conditions.
Article Synopsis
- The study explores how to effectively implement person-centred outcome measures in palliative care for children with life-threatening or life-limiting conditions, as current evidence is limited compared to adult care.
- Interviews with 26 children, 40 parents, 13 siblings, 15 healthcare professionals, and 12 health commissioners revealed strong support for such measures, highlighting benefits like improved communication and prioritization of patient needs.
- Identified challenges include potential increased staff workload, risks around data usage, and barriers such as privacy concerns and the need for child-friendly language, while facilitators include clear communication of benefits and trusted professional support during the process.
Article Synopsis
- Children and young people with life-limiting conditions express their experiences using a mix of medical terms and personal language, indicating a deep understanding of their health.
- A study involving 26 participants aged 5-17 revealed that they describe their condition through comparisons and metaphors, highlighting feelings of loss and isolation compared to peers.
- By focusing on how these young individuals articulate their experiences, healthcare professionals can have more meaningful discussions that address their unique needs and concerns.