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The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study
Carter G, McLaughlin D, Kernohan WG, Hudson P, Clarke M, Froggatt K, Passmore P, Brazil K.. Journal of advanced nursing, 2018-04-20
Topic: Risk, prevention and care in population studies
Aim To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. Background The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding. Design Descriptive qualitative study. Methods During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis. Results Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff. Conclusion The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs' dementia expertise to maximize their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world.
Key findings
- Results Three themes were identified: (1) Caring for someone living with dementia.
- Conclusion The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs' dementia expertise to maximize their role in facilitating best interest decision-making.
- This has significant implications for nursing practice and for service user and nursing staff education.
- Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world.
Study details
- Evidence strengthLow
How this study scored 64/100
Published in a peer-reviewed journal, and it is a randomised controlled trial. Scored zero for sample size and effect reported 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 37 of the 58 points we could judge it on, which is 64 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Journal of advanced nursing) |
| Journal's citation record | — / 4 | No journal record from OpenAlex — left out of this score |
| Study design | 11 / 12 | A randomised controlled trial (from PubMed type “Randomized Controlled Trial”) |
| 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 | 2018 — 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 | 3 / 3 | Studied in people (pubmed indexes it as a clinical or observational study) |
| Randomised / blinded | 1 / 2 | Randomised (as stated in the record) |
| 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 29603347) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Points | 37 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 37 of the 58 points we could judge it on is 64 out of 100. |
| Total | 64 / 100 | — |
What each of these 20 components measures, and what this score is not →
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Cite this study APA, Vancouver, BibTeX · download .bib or .ris
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. The record names 8 authors; APA and Vancouver show the first six, BibTeX and the downloads carry all of them. Check the citation against the original before you use it.
APA 7th
Carter, G., McLaughlin, D., Kernohan, W. G., Hudson, P., Clarke, M., Froggatt, K., et al. (2018). The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study. Journal of advanced nursing. https://doi.org/10.1111/jan.13576
Vancouver
Carter G, McLaughlin D, Kernohan WG, Hudson P, Clarke M, Froggatt K, et al. The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study. Journal of advanced nursing. 2018. doi:10.1111/jan.13576. PMID: 29603347.
BibTeX
@article{carter2018-29603347,
author = {Carter, G. and McLaughlin, D. and Kernohan, W. G. and Hudson, P. and Clarke, M. and Froggatt, K. and Passmore, P. and Brazil, K.},
title = {{The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study}},
journal = {Journal of advanced nursing},
year = {2018},
doi = {10.1111/jan.13576},
pmid = {29603347},
url = {https://doi.org/10.1111/jan.13576}
}
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