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A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended
Van Rickstal R, Vleminck A, Engelborghs S, Versijpt J, Van den Block L.. Palliative medicine, 2022-04-26
Topic: Risk, prevention and care in population studies
Background Broad consensus exists on the relevance of advance care planning in dementia. Although people with young-onset dementia and their family are hypothesized to have distinct needs and preferences in this area, they are hardly ever included in studies. Aim We aim to explore the experiences with and views on advance care planning of people with young-onset dementia and their family caregivers. Design A qualitative study was conducted, analyzing semi-structured interviews through the method of constant comparative analysis. Setting/participants We included 10 people with young-onset dementia and 10 of their family caregivers in Flanders. Results Participants lacked awareness about the concept of advance care planning, especially as a communication process. They had not or barely engaged in planning future care yet pointed out possible benefits of doing so. Initially, people with young-onset dementia and their caregivers directly associated advance care planning with planning for the actual end of life. When discussing advance care planning as a communication process, they paid ample attention to non-medical aspects and did not distinguish between medical, mental, and social health. Rather, respondents thought in the overarching framework of what is important to them now and in the future. Conclusions Engagement in advance care planning might be hindered if it is too medicalized and exclusively patient-centered. To accommodate advance care planning to people with young-onset dementia's and their caregivers' needs, it should be presented and implemented as a holistic, flexible, and relational communication process. Policy and practice recommendations are provided on how to do so.
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APA 7th
Van Rickstal, R., Vleminck, A., Engelborghs, S., Versijpt, J., & Van den Block, L. (2022). A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended. Palliative medicine. https://doi.org/10.1177/02692163221090385
Vancouver
Van Rickstal R, Vleminck A, Engelborghs S, Versijpt J, Van den Block L. A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended. Palliative medicine. 2022. doi:10.1177/02692163221090385. PMID: 35470742.
BibTeX
@article{vanrickstal2022-35470742,
author = {Van Rickstal, R. and Vleminck, A. and Engelborghs, S. and Versijpt, J. and Van den Block, L.},
title = {{A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended}},
journal = {Palliative medicine},
year = {2022},
doi = {10.1177/02692163221090385},
pmid = {35470742},
url = {https://doi.org/10.1177/02692163221090385}
}
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Key findings
- Results Participants lacked awareness about the concept of advance care planning, especially as a communication process.
Study details
- Evidence strengthLow
How this study scored 43/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomised / 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 multi-centre collaboration, so those were left out: it earned 25 of the 58 points we could judge it on, which is 43 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Palliative medicine) |
| 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 | 3 / 5 | 2022 — within 6 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) |
| Randomised / blinded | 0 / 2 | No randomisation 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 |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 35470742) |
| Free to read | 2 / 2 | Free to read |
| Points | 25 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 25 of the 58 points we could judge it on is 43 out of 100. |
| Total | 43 / 100 | — |
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