Palliative medicine
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Palliative medicine · Oct 2023
Review'You have a little human being kicking inside you and an unbearable pain of knowing there will be a void at the end': A meta-ethnography exploring the experience of parents whose baby is diagnosed antenatally with a life limiting or life-threatening condition.
Parents of babies diagnosed with life limiting conditions in the perinatal period face numerous challenges. Considerations include the remainder of the pregnancy, delivery of the baby and decisions around care in the neonatal period. ⋯ Professionals, family members and friendship groups influence the experience, validating parents and their baby's identity and supporting parents in having a sense of control and normality by demonstrating empathy, and providing time and clear communication.
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Palliative medicine · Oct 2023
ReviewWhat outcomes do studies use to measure the impact of prognostication on people with advanced cancer? Findings from a systematic review of quantitative and qualitative studies.
Studies evaluating the impact of prognostication in advanced cancer patients vary in the outcomes they measure, and there is a lack of consensus about which outcomes are most important. ⋯ Outcome reporting and measurement varied markedly across the studies. A standardised approach to outcome reporting in studies of prognosis is necessary to enhance data synthesis, improve clinical practice and better align with stakeholders' priorities.
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Palliative medicine · Oct 2023
A grounded theory study exploring palliative care healthcare professionals' experiences of managing digital legacy as part of advance care planning for people receiving palliative care.
Digital legacy refers to the online content available about someone following their death. This may include social media profiles, photos, blogs or gaming profiles. Some patients may find it comforting that their digital content remains online, and those bereaved may view it as a way to continue bonds with the deceased person. Despite its growing relevance, there is limited evidence worldwide around the experiences of palliative care professionals in supporting patients to manage their digital legacy. ⋯ The emerging theory 'understanding the impact of digital legacy' offers insight into the knowledge and experiences of healthcare professionals working in a palliative care setting. Digital assets were viewed as being equally as important as physical assets and should be considered as part of advance care planning conversations.
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Palliative medicine · Oct 2023
More time in a community setting: A service evaluation of the impact of intrathecal drug delivery systems on place of care of patients with cancer pain.
Intrathecal Drug Delivery Systems are underutilised in the management of refractory cancer pain despite evidence of their efficacy. Not all patients who are offered this treatment modality accept it. There is no current evidence that indicates if the use of intrathecal drug delivery systems impacts on place of care for patients with cancer related pain. ⋯ In patients with advanced cancer, the successful establishment of intrathecal analgesia is associated with more time in the community and a lower morphine equivalent daily dose at end of life. The study has low numbers, and the sample was retrospectively selected. Nevertheless, these findings suggest the initial investment of time in an inpatient setting may be beneficial. Further research is required, using larger, prospective studies of patient outcomes in this setting.
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Palliative medicine · Oct 2023
Motor neurone disease: A point-prevalence study of patient reported symptom prevalence, severity and palliative care needs.
Motor neurone disease is a rare but debilitating illness with incomplete evidence regarding patients' symptom burden. Palliative care and generalist clinicians are often in-experienced in caring for these patients and assessing their needs. ⋯ Patients with motor neurone disease report high symptom burden. A validated motor neurone disease-specific symptom assessment tool is needed to accurately assess patients, including important variations in symptom clusters according to phenotype. Further research must focus on evidence-based treatment guidelines for symptoms experienced commonly and severely.