Browse Items (11 total)

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…

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…

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…

Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of…

Background/aims: Children with life-limiting and life-threatening conditions are rarely involved in research. Engaging them directly enables them to express the meaning of their condition in their own words. This study aimed to explore the language…

Background: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) face specific challenges when self-reporting health outcomes, including communication difficulties and sensitivities around subject matter. No ideal…

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…

BACKGROUND: The Children's Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they…

This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on…

Background/aims: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) represent a group with complex care needs that are met by multiple services and thus may be subject to particular vulnerabilities.

Context: Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations.…
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