What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders
Abstract Background People with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on exp...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2018-12-01
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| Series: | BMC Geriatrics |
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| Online Access: | http://link.springer.com/article/10.1186/s12877-018-0983-0 |
| _version_ | 1818417985251966976 |
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| author | Claire Bamford Richard Lee Emma McLellan Marie Poole Karen Harrison-Dening Julian Hughes Louise Robinson Catherine Exley |
| author_facet | Claire Bamford Richard Lee Emma McLellan Marie Poole Karen Harrison-Dening Julian Hughes Louise Robinson Catherine Exley |
| author_sort | Claire Bamford |
| collection | DOAJ |
| description | Abstract Background People with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention. Methods The views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256 h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups. Results Through the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death. Conclusions This unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia. |
| first_indexed | 2024-12-14T12:15:29Z |
| format | Article |
| id | doaj.art-096363cb46b2468e8e589ed9fcc31c80 |
| institution | Directory Open Access Journal |
| issn | 1471-2318 |
| language | English |
| last_indexed | 2024-12-14T12:15:29Z |
| publishDate | 2018-12-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Geriatrics |
| spelling | doaj.art-096363cb46b2468e8e589ed9fcc31c802022-12-21T23:01:38ZengBMCBMC Geriatrics1471-23182018-12-0118111510.1186/s12877-018-0983-0What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholdersClaire Bamford0Richard Lee1Emma McLellan2Marie Poole3Karen Harrison-Dening4Julian Hughes5Louise Robinson6Catherine Exley7Institute of Health and Society, Newcastle UniversityDepartment of Social Work, Education and Community Wellbeing, Faculty of Health & Life Sciences, Northumbria UniversityInstitute of Health and Society, Newcastle UniversityInstitute of Health and Society, Newcastle UniversityDementia UKBristol Medical School, Population and Health SciencesInstitute of Health and Society, Newcastle UniversityHealth and Life Sciences, Northumbria UniversityAbstract Background People with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention. Methods The views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256 h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups. Results Through the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death. Conclusions This unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia.http://link.springer.com/article/10.1186/s12877-018-0983-0DementiaEnd of life careQualitative researchFamily caregiversPalliative care |
| spellingShingle | Claire Bamford Richard Lee Emma McLellan Marie Poole Karen Harrison-Dening Julian Hughes Louise Robinson Catherine Exley What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders BMC Geriatrics Dementia End of life care Qualitative research Family caregivers Palliative care |
| title | What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders |
| title_full | What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders |
| title_fullStr | What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders |
| title_full_unstemmed | What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders |
| title_short | What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders |
| title_sort | what enables good end of life care for people with dementia a multi method qualitative study with key stakeholders |
| topic | Dementia End of life care Qualitative research Family caregivers Palliative care |
| url | http://link.springer.com/article/10.1186/s12877-018-0983-0 |
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