Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia
Abstract Background Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadeq...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2020-03-01
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| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12904-020-0533-3 |
| _version_ | 1828871346950504448 |
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| author | Lina Riedl Manuela Bertok Julia Hartmann Julia Fischer Carola Rossmeier Andreas Dinkel Marion Ortner Janine Diehl-Schmid |
| author_facet | Lina Riedl Manuela Bertok Julia Hartmann Julia Fischer Carola Rossmeier Andreas Dinkel Marion Ortner Janine Diehl-Schmid |
| author_sort | Lina Riedl |
| collection | DOAJ |
| description | Abstract Background Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers’ knowledge regarding palliative care issues and caregivers’ involvement in medical and care decisions before and after studying this booklet. Methods A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet. Results Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future. Conclusions The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia. Trial registration clinicaltrial.gov , NCT03548142 . Retrospectively registered 7 June 2018. |
| first_indexed | 2024-12-13T06:30:20Z |
| format | Article |
| id | doaj.art-1eb4461e2939481093665e09582ac50a |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-12-13T06:30:20Z |
| publishDate | 2020-03-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-1eb4461e2939481093665e09582ac50a2022-12-21T23:56:37ZengBMCBMC Palliative Care1472-684X2020-03-011911810.1186/s12904-020-0533-3Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementiaLina Riedl0Manuela Bertok1Julia Hartmann2Julia Fischer3Carola Rossmeier4Andreas Dinkel5Marion Ortner6Janine Diehl-Schmid7School of Medicine, Department of Psychiatry and Psychotherapy, Technical University of MunichSchool of Medicine, Department of Psychiatry and Psychotherapy, Technical University of MunichSchool of Medicine, Department of Psychiatry and Psychotherapy, Technical University of MunichSchool of Medicine, Department of Psychiatry and Psychotherapy, Technical University of MunichSchool of Medicine, Department of Psychiatry and Psychotherapy, Technical University of MunichSchool of Medicine, Department of Psychosomatic Medicine, Technical University of MunichSchool of Medicine, Department of Psychiatry and Psychotherapy, Technical University of MunichSchool of Medicine, Department of Psychiatry and Psychotherapy, Technical University of MunichAbstract Background Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers’ knowledge regarding palliative care issues and caregivers’ involvement in medical and care decisions before and after studying this booklet. Methods A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet. Results Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future. Conclusions The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia. Trial registration clinicaltrial.gov , NCT03548142 . Retrospectively registered 7 June 2018.http://link.springer.com/article/10.1186/s12904-020-0533-3Palliative careAdvanced dementiaInvolvement in care decisionsDecision making |
| spellingShingle | Lina Riedl Manuela Bertok Julia Hartmann Julia Fischer Carola Rossmeier Andreas Dinkel Marion Ortner Janine Diehl-Schmid Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia BMC Palliative Care Palliative care Advanced dementia Involvement in care decisions Decision making |
| title | Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia |
| title_full | Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia |
| title_fullStr | Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia |
| title_full_unstemmed | Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia |
| title_short | Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia |
| title_sort | development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia |
| topic | Palliative care Advanced dementia Involvement in care decisions Decision making |
| url | http://link.springer.com/article/10.1186/s12904-020-0533-3 |
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