Cargando…
Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting
BACKGROUND: The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a...
Autores principales: | , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2020
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7694266/ https://www.ncbi.nlm.nih.gov/pubmed/33243281 http://dx.doi.org/10.1186/s13643-020-01525-0 |
_version_ | 1783614938044956672 |
---|---|
author | James, Charles Walshe, Catherine Froggatt, Katherine |
author_facet | James, Charles Walshe, Catherine Froggatt, Katherine |
author_sort | James, Charles |
collection | PubMed |
description | BACKGROUND: The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may be described in terms of a feeling of powerlessness to make changes during care provision. This feeling may also suggest an experience of moral distress. The aim of this systematic review is to synthesise qualitative evidence relating to these experiences. METHODS: This review adopts a narrative synthesis approach. A search will be conducted for studies written in the English language in the bibliographic databases MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science and Academic Search Complete covering periods from 1984 to present. Included studies will be qualitative or mixed-methods designs. The search terms will be related to dementia and caregivers, and the process will be focused on dementia at the moderate to the advanced stages within the domestic home setting. Reference lists of included papers will also be searched for additional relevant citations. Search terms and strategies will be checked by two independent reviewers. The identification of abstracts and full texts of studies will be done by the author, while the quality and the risk of bias will also be checked by the two independent reviewers. DISCUSSION: Psychological distress is cited as an experience reported within informal caregiving. For the caregiver, it is associated with a negative impact on general health. To date, no synthesis exists on the specific experience of informal caregiving for people with moderate to advanced dementia within the domestic home setting. This review considers that variation of accounts contributes to how the informal caregivers’ general experience is explored in future research. This may enable gaps in current knowledge to be highlighted within the wider context of caregiving in the domestic home setting. SYSTEMATIC REVIEW REGISTRATION: This review is registered with PROSPERO (CRD42020183649). SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13643-020-01525-0. |
format | Online Article Text |
id | pubmed-7694266 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-76942662020-11-30 Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting James, Charles Walshe, Catherine Froggatt, Katherine Syst Rev Protocol BACKGROUND: The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may be described in terms of a feeling of powerlessness to make changes during care provision. This feeling may also suggest an experience of moral distress. The aim of this systematic review is to synthesise qualitative evidence relating to these experiences. METHODS: This review adopts a narrative synthesis approach. A search will be conducted for studies written in the English language in the bibliographic databases MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science and Academic Search Complete covering periods from 1984 to present. Included studies will be qualitative or mixed-methods designs. The search terms will be related to dementia and caregivers, and the process will be focused on dementia at the moderate to the advanced stages within the domestic home setting. Reference lists of included papers will also be searched for additional relevant citations. Search terms and strategies will be checked by two independent reviewers. The identification of abstracts and full texts of studies will be done by the author, while the quality and the risk of bias will also be checked by the two independent reviewers. DISCUSSION: Psychological distress is cited as an experience reported within informal caregiving. For the caregiver, it is associated with a negative impact on general health. To date, no synthesis exists on the specific experience of informal caregiving for people with moderate to advanced dementia within the domestic home setting. This review considers that variation of accounts contributes to how the informal caregivers’ general experience is explored in future research. This may enable gaps in current knowledge to be highlighted within the wider context of caregiving in the domestic home setting. SYSTEMATIC REVIEW REGISTRATION: This review is registered with PROSPERO (CRD42020183649). SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13643-020-01525-0. BioMed Central 2020-11-26 /pmc/articles/PMC7694266/ /pubmed/33243281 http://dx.doi.org/10.1186/s13643-020-01525-0 Text en © The Author(s) 2020 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Protocol James, Charles Walshe, Catherine Froggatt, Katherine Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting |
title | Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting |
title_full | Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting |
title_fullStr | Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting |
title_full_unstemmed | Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting |
title_short | Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting |
title_sort | protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting |
topic | Protocol |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7694266/ https://www.ncbi.nlm.nih.gov/pubmed/33243281 http://dx.doi.org/10.1186/s13643-020-01525-0 |
work_keys_str_mv | AT jamescharles protocolforasystematicreviewontheexperienceofinformalcaregiversforpeoplewithamoderatetoadvanceddementiawithinadomestichomesetting AT walshecatherine protocolforasystematicreviewontheexperienceofinformalcaregiversforpeoplewithamoderatetoadvanceddementiawithinadomestichomesetting AT froggattkatherine protocolforasystematicreviewontheexperienceofinformalcaregiversforpeoplewithamoderatetoadvanceddementiawithinadomestichomesetting |