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How do persons with dementia participate in decision making related to health and daily care? a multi-case study
Smebye KL, Kirkevold M, Engedal K.. BMC health services research, 2012-08-07
Topic: Health services, long-term care and technology
Background Many countries have passed laws giving patients the right to participate in decisions about health care. People with dementia cannot be assumed to be incapable of making decisions on their diagnosis alone as they may have retained cognitive abilities.The purpose of this study was to gain a better understanding of how persons with dementia participated in making decisions about health care and how their family carers and professional caregivers influenced decision making. Methods This Norwegian study had a qualitative multi-case design. The triad in each of the ten cases consisted of the person with dementia, the family carer and the professional caregiver, in all 30 participants. Inclusion criteria for the persons with dementia were: (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2, moderate dementia; (3) able to communicate verbally. The family carers and professional caregivers were then asked to participate.A semi-structured interview guide was used in interviews with family carers and professional caregivers. Field notes were written after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day centre. How the professional caregivers facilitated decision making was the focus of the observations that varied in length from 30 to 90 minutes. The data were analyzed using framework analysis combined with a hermeneutical interpretive approach. Results Professional caregivers based their assessment of mental competence on experience and not on standardized tests. Persons with dementia demonstrated variability in how they participated in decision making. Pseudo-autonomous decision making and delegating decision making were new categories that emerged. Autonomous decision making did occur but shared decision making was the most typical pattern. Reduced mental capacity, lack of available choices or not being given the opportunity to participate led to non-involvement. Not all decisions were based on logic; personal values and relationships were also considered. Conclusions Persons with moderate dementia demonstrated variability in how they participated in decision making. Optimal involvement was facilitated by positioning them as capable of influencing decisions, assessing decision-specific competence, clarifying values and understanding the significance of relationships and context.
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APA 7th
Smebye, K. L., Kirkevold, M., & Engedal, K. (2012). How do persons with dementia participate in decision making related to health and daily care? a multi-case study. BMC health services research. https://doi.org/10.1186/1472-6963-12-241
Vancouver
Smebye KL, Kirkevold M, Engedal K. How do persons with dementia participate in decision making related to health and daily care? a multi-case study. BMC health services research. 2012. doi:10.1186/1472-6963-12-241. PMID: 22870952.
BibTeX
@article{smebye2012-22870952,
author = {Smebye, K. L. and Kirkevold, M. and Engedal, K.},
title = {{How do persons with dementia participate in decision making related to health and daily care? a multi-case study}},
journal = {BMC health services research},
year = {2012},
doi = {10.1186/1472-6963-12-241},
pmid = {22870952},
url = {https://doi.org/10.1186/1472-6963-12-241}
}
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Key findings
- Results Professional caregivers based their assessment of mental competence on experience and not on standardized tests.
- Persons with dementia demonstrated variability in how they participated in decision making.
- Conclusions Persons with moderate dementia demonstrated variability in how they participated in decision making.
Study details
- Participants30
- Evidence strengthLow
How this study scored 47/100
Published in a peer-reviewed journal. Scored zero for study design, effect reported 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 27 of the 58 points we could judge it on, which is 47 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (BMC health services research) |
| 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 | 1 / 5 | 2012 — within 20 year(s) of the newest study here |
| Sample size | 1 / 4 | 30 participants |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| 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 22870952) |
| Free to read | 2 / 2 | Free to read |
| Points | 27 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 27 of the 58 points we could judge it on is 47 out of 100. |
| Total | 47 / 100 | — |
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