Pub Date : 2023-01-01DOI: 10.1136/spcare-2023-mcrc.38
J. Hussain, S. Hanchanale, J. Lee, N. Khan, Q. Abbas, G. Gupta
{"title":"39 Experience of racial prejudice or discrimination in palliative care settings – a survey of UK specialist palliative care services","authors":"J. Hussain, S. Hanchanale, J. Lee, N. Khan, Q. Abbas, G. Gupta","doi":"10.1136/spcare-2023-mcrc.38","DOIUrl":"https://doi.org/10.1136/spcare-2023-mcrc.38","url":null,"abstract":"","PeriodicalId":117798,"journal":{"name":"The Marie Curie Research Conference 2023","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"133146125","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1136/spcare-2023-mcrc.4
A. Nwosu, S. Stanley, A. Mcdougall, C. Mayland, S. Mason, J. Ellershaw
{"title":"5 Non-invasive technology to assess hydration status in advanced cancer to explore relationships between fluid-status and symptoms at the end-of-life: an observational study using bioelectrical impedance analysis","authors":"A. Nwosu, S. Stanley, A. Mcdougall, C. Mayland, S. Mason, J. Ellershaw","doi":"10.1136/spcare-2023-mcrc.4","DOIUrl":"https://doi.org/10.1136/spcare-2023-mcrc.4","url":null,"abstract":"","PeriodicalId":117798,"journal":{"name":"The Marie Curie Research Conference 2023","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"114121244","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1136/spcare-2023-mcrc.22
V. A. Potter, F. Zemrak
{"title":"23 Access to palliative care for ACHD patients – a joint service review","authors":"V. A. Potter, F. Zemrak","doi":"10.1136/spcare-2023-mcrc.22","DOIUrl":"https://doi.org/10.1136/spcare-2023-mcrc.22","url":null,"abstract":"","PeriodicalId":117798,"journal":{"name":"The Marie Curie Research Conference 2023","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"125103234","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1136/spcare-2023-mcrc.35
I. Uddin, Caitlin Spooner, H. Llewellyn, Anthony Kyriakides-Yeldham, B. Vivat
{"title":"36 End-of life care provisions for minority ethnic groups living in the UK: a literature review","authors":"I. Uddin, Caitlin Spooner, H. Llewellyn, Anthony Kyriakides-Yeldham, B. Vivat","doi":"10.1136/spcare-2023-mcrc.35","DOIUrl":"https://doi.org/10.1136/spcare-2023-mcrc.35","url":null,"abstract":"","PeriodicalId":117798,"journal":{"name":"The Marie Curie Research Conference 2023","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"133615941","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1136/spcare-2023-mcrc.47
B. Vivat, P. Speck, I. Uddin, G. Rohde, Nicola White, B. Candy, L. Jones, A. Tookman, Michael B King
{"title":"48 What kinds of spiritual and/or religious interventions for the wellbeing of people living with terminal illnesses did RCTs investigate in 2011–22? Findings from a Cochrane review, updating a previous review (Candy et al. 2012)","authors":"B. Vivat, P. Speck, I. Uddin, G. Rohde, Nicola White, B. Candy, L. Jones, A. Tookman, Michael B King","doi":"10.1136/spcare-2023-mcrc.47","DOIUrl":"https://doi.org/10.1136/spcare-2023-mcrc.47","url":null,"abstract":"","PeriodicalId":117798,"journal":{"name":"The Marie Curie Research Conference 2023","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"133916656","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1136/spcare-2023-mcrc.48
E. Baddeley, A. Bravington, A. Nelson, Miriam J. Johnson, F. Murtagh, D. Currow, George Obita, E. Boland, K. Seddon, A. Oliver, S. Noble, J. Boland
{"title":"49 Burden and challenges of malignant bowel obstruction: a qualitative study","authors":"E. Baddeley, A. Bravington, A. Nelson, Miriam J. Johnson, F. Murtagh, D. Currow, George Obita, E. Boland, K. Seddon, A. Oliver, S. Noble, J. Boland","doi":"10.1136/spcare-2023-mcrc.48","DOIUrl":"https://doi.org/10.1136/spcare-2023-mcrc.48","url":null,"abstract":"","PeriodicalId":117798,"journal":{"name":"The Marie Curie Research Conference 2023","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132264692","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1136/spcare-2023-mcrc.11
Francesca Mazzaschi, Kali Barawi, Anna Torren-Burton, E. Sutton, D. Wakefield, Emma Gilbert, S. Goss, M. Longo, K. Seddon, A. Nelson, A. Byrne, L. Selman, E. Harrop
IntroductionThe COVID-19 pandemic has had a huge impact on all aspects of life. The high number of deaths and bereavements increased demand on already stretched services, whilst the unique circumstances caused by enforced social distancing meant that people bereaved at this time faced many additional challenges and potentially problematic grief trajectories.AimsTo explore in depth people's lived experiences of bereavement during the Covid-19 pandemic, their adaptation and coping during this time, and the effect of informal and formal sources of bereavement support .MethodsSemi-structured longitudinal telephone interviews were conducted with people bereaved during the first 10 months of the pandemic (March to December 2020), purposively sampled from a cohort of survey participants. Interview transcripts were analysed thematically.Results24 participants (19 female;5 men) took part in a first interview and 15 in a follow up interview, approximately four months later. Five major themes were identified: End of life experiences;Funerals and memorialisation;Grieving and psychological impacts;Coping and adaptation and Sources of support. Many challenges relating to the pandemic context were identified, including restrictions to end of life and memorialisation arrangements, dealing with personal affairs, and lack of support. Such experiences negatively impacted individual grieving and wellbeing, in particular feelings of isolation and guilt surrounding lack of contact with the deceased. Participants experienced difficulties accessing services, and sometimes received support that was not appropriate for their particular situations and needs. Despite these difficulties, some people demonstrated remarkable resilience, and ability to cope and find meaning.ConclusionsPeople bereaved in the COVID-19 pandemic have navigated grief and bereavement through exceptionally challenging circumstances, often lacking the informal and formal support needed to help them cope.ImpactThese insights can be used to help improve the care and support provided to bereaved people throughout their bereavement journeys.
{"title":"12 Grieving during COVID-19: exploring the lived experiences of people bereaved during the first two waves of the pandemic","authors":"Francesca Mazzaschi, Kali Barawi, Anna Torren-Burton, E. Sutton, D. Wakefield, Emma Gilbert, S. Goss, M. Longo, K. Seddon, A. Nelson, A. Byrne, L. Selman, E. Harrop","doi":"10.1136/spcare-2023-mcrc.11","DOIUrl":"https://doi.org/10.1136/spcare-2023-mcrc.11","url":null,"abstract":"IntroductionThe COVID-19 pandemic has had a huge impact on all aspects of life. The high number of deaths and bereavements increased demand on already stretched services, whilst the unique circumstances caused by enforced social distancing meant that people bereaved at this time faced many additional challenges and potentially problematic grief trajectories.AimsTo explore in depth people's lived experiences of bereavement during the Covid-19 pandemic, their adaptation and coping during this time, and the effect of informal and formal sources of bereavement support .MethodsSemi-structured longitudinal telephone interviews were conducted with people bereaved during the first 10 months of the pandemic (March to December 2020), purposively sampled from a cohort of survey participants. Interview transcripts were analysed thematically.Results24 participants (19 female;5 men) took part in a first interview and 15 in a follow up interview, approximately four months later. Five major themes were identified: End of life experiences;Funerals and memorialisation;Grieving and psychological impacts;Coping and adaptation and Sources of support. Many challenges relating to the pandemic context were identified, including restrictions to end of life and memorialisation arrangements, dealing with personal affairs, and lack of support. Such experiences negatively impacted individual grieving and wellbeing, in particular feelings of isolation and guilt surrounding lack of contact with the deceased. Participants experienced difficulties accessing services, and sometimes received support that was not appropriate for their particular situations and needs. Despite these difficulties, some people demonstrated remarkable resilience, and ability to cope and find meaning.ConclusionsPeople bereaved in the COVID-19 pandemic have navigated grief and bereavement through exceptionally challenging circumstances, often lacking the informal and formal support needed to help them cope.ImpactThese insights can be used to help improve the care and support provided to bereaved people throughout their bereavement journeys.","PeriodicalId":117798,"journal":{"name":"The Marie Curie Research Conference 2023","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132766095","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1136/spcare-2023-mcrc.2
Mark Hughes, Natalie Pettitt, N. Kupeli, Nicola White
{"title":"2 A conversation with.....PPI","authors":"Mark Hughes, Natalie Pettitt, N. Kupeli, Nicola White","doi":"10.1136/spcare-2023-mcrc.2","DOIUrl":"https://doi.org/10.1136/spcare-2023-mcrc.2","url":null,"abstract":"","PeriodicalId":117798,"journal":{"name":"The Marie Curie Research Conference 2023","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"130556192","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1136/spcare-2023-mcrc.7
E. Wilson
{"title":"8 Shifted deaths: the use of home mechanical ventilation for motor neurone disease (MND)","authors":"E. Wilson","doi":"10.1136/spcare-2023-mcrc.7","DOIUrl":"https://doi.org/10.1136/spcare-2023-mcrc.7","url":null,"abstract":"","PeriodicalId":117798,"journal":{"name":"The Marie Curie Research Conference 2023","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"123461591","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1136/spcare-2023-mcrc.42
Tungki Pratama Umar, R. Sayad, Muhammed Edib Mokresh, Maria Chakhide, Reem Mahjoub Seedahmed, Hasnaa Saad, Lubna Mohammed
{"title":"43 Health-related quality of life in adults living with Ehlers-Danlos syndrome: a systematic review and meta-analysis involving 8251 patients","authors":"Tungki Pratama Umar, R. Sayad, Muhammed Edib Mokresh, Maria Chakhide, Reem Mahjoub Seedahmed, Hasnaa Saad, Lubna Mohammed","doi":"10.1136/spcare-2023-mcrc.42","DOIUrl":"https://doi.org/10.1136/spcare-2023-mcrc.42","url":null,"abstract":"","PeriodicalId":117798,"journal":{"name":"The Marie Curie Research Conference 2023","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"127127013","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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