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Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development
van der Steen JT, Lemos Dekker N, Gijsberts MHE, Vermeulen LH, Mahler MM, The BA.. BMC palliative care, 2017-04-28
Topic: Risk, prevention and care in population studies
Background When entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base. Methods In 2015-2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. The terminal phase was defined as dying but because of the difficulty predicting it, we included advanced dementia. We initially analysed the three parts separately, followed by an integrated analysis of (1)-(3) to inform service development. Results (1) The EAPC domain of "avoiding overly aggressive, burdensome, or futile treatment" was regarded of particular relevance in the terminal phase, along with a number of recommendations that refer to providing of comfort. (2) Families preferred continuity in care and living arrangements. Despite a recognition that this was a time when they had complex support needs, they found it difficult to accept involvement of a large team of unfamiliar (professional) caregivers. Mostly, terminal care was preferred at the place of residence. (3) The expert interviews identified preferred, successful models in which a representative of a well-trained team has the time, authority and necessary expertise to provide care and education of staff and family to where people are and which ensure continuity of relationships with and around the patient. Conclusion A mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model. Compared to transfer to a hospice in the last weeks or days, it has the potential to address the priorities of families and patients for continuity of care, relationships and specialist expertise.
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APA 7th
van der Steen, J. T., Lemos Dekker, N., Gijsberts, M. H. E., Vermeulen, L. H., Mahler, M. M., & The, B. A. (2017). Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development. BMC palliative care. https://doi.org/10.1186/s12904-017-0201-4
Vancouver
van der Steen JT, Lemos Dekker N, Gijsberts MHE, Vermeulen LH, Mahler MM, The BA. Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development. BMC palliative care. 2017. doi:10.1186/s12904-017-0201-4. PMID: 28454534.
BibTeX
@article{vandersteen2017-28454534,
author = {van der Steen, J. T. and Lemos Dekker, N. and Gijsberts, M. H. E. and Vermeulen, L. H. and Mahler, M. M. and The, B. A.},
title = {{Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development}},
journal = {BMC palliative care},
year = {2017},
doi = {10.1186/s12904-017-0201-4},
pmid = {28454534},
url = {https://doi.org/10.1186/s12904-017-0201-4}
}
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Key findings
- Results (1) The EAPC domain of "avoiding overly aggressive, burdensome, or futile treatment" was regarded of particular relevance in the terminal phase, along with a number of recommendations that refer to providing of comfort.
- Compared to transfer to a hospice in the last weeks or days, it has the potential to address the priorities of families and patients for continuity of care, relationships and specialist expertise.
Study details
- Evidence strengthLow
How this study scored 41/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomized / blinded because the record does not state it. We have no data on journal's citation record, times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record and multicenter collaboration, so those were left out: it earned 24 of the 58 points we could judge it on, which is 41 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (BMC palliative care) |
| Journal's citation record | — / 4 | No journal record from OpenAlex — left out of this score |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 2 / 5 | 2017 — within 10 year(s) of the newest study here |
| Sample size | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomized / blinded | 0 / 2 | No randomization or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| Senior author's track record | — / 4 | Senior author's record not available — left out of this score |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multicenter collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 28454534) |
| Free to read | 2 / 2 | Free to read |
| Points | 24 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 24 of the 58 points we could judge it on is 41 out of 100. |
| Total | 41 / 100 | — |
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