life-limiting illnesslongitudinalqualitative methodssiblingsA total of 31 siblings, aged between 5 and 16 years, of children with a life-limiting condition, participated in a longitudinal, mixed method study. Data collection included standardised psychometric measures and visual and partic...
life-limiting illnesslongitudinalqualitative methodssiblingsA total of 31 siblings, aged between 5 and 16 years, of children with a life-limiting condition, participated in a longitudinal, mixed method study. Data collection included standardised psychometric measures and visual and participatory qualitative...
Most children with a life-limiting condition are cared for in the family home by their parents, who require professional support to provide this care. Owing to advances in medicine and medical technology these children are living longer and, given the often relentless and all-encompassing nature ...
More than 40,000 children in England live with a life limiting condition. These includeconditionsfor which there is no reasonable hope of cure and from which the child or young person will die, as well as conditions for which treatment is available but not always successful, such as cancer o...
To provide participants with opportunities to acquire additional knowledge, experiences and values to provide supportive and palliative care for children with life-limiting conditions and their families. An integrated approach to the delivery of healthcare across the statutory and voluntary services is esse...
that is breaking my heart. It scares me when I think about the future and my son who I’m watching sleep across the room from me now.My condition scares me. Between losing my beautiful eldest son Brendan Bjørn two years ago and my health struggles of the last four years, I am reel...
Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis. Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing bo... V Fisher,L Fraser,J...
Living with a life-limiting condition has a profound and pervasive effect for the young adult with far-reaching consequences for the family [3]. The disease trajectory is often unpredictable [4] and compounded by concerns related to the need to transition to adult services, often provided by a...
provide meaningful time away from the day-to-day challenges associated with living with a life-limiting condition The research also highlights the need for ongoing efforts to create a society where disabled young people can have access to recreational activities and can live fully as citizens in th...
This study aims to explore how paediatricians prepare parents for end-of-life decision-making for a child with a life-limiting condition using clinical simulation.DesignIndividual, semistructured, post-simulation qualitative interviews of paediatricians and parent-actors.SettingAcute intensive and long-...