Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting
Abstract 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 experien...
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| Format: | Article |
| Language: | English |
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BMC
2020-11-01
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| Series: | Systematic Reviews |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s13643-020-01525-0 |
| _version_ | 1818588120015175680 |
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| author | Charles James Catherine Walshe Katherine Froggatt |
| author_facet | Charles James Catherine Walshe Katherine Froggatt |
| author_sort | Charles James |
| collection | DOAJ |
| description | Abstract 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 ). |
| first_indexed | 2024-12-16T09:19:42Z |
| format | Article |
| id | doaj.art-7b308638eaba4928b3ef04fd9d8de0b3 |
| institution | Directory Open Access Journal |
| issn | 2046-4053 |
| language | English |
| last_indexed | 2024-12-16T09:19:42Z |
| publishDate | 2020-11-01 |
| publisher | BMC |
| record_format | Article |
| series | Systematic Reviews |
| spelling | doaj.art-7b308638eaba4928b3ef04fd9d8de0b32022-12-21T22:36:49ZengBMCSystematic Reviews2046-40532020-11-01911810.1186/s13643-020-01525-0Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home settingCharles James0Catherine Walshe1Katherine Froggatt2Faculty of Health and Medicine, Lancaster UniversityFaculty of Health and Medicine, Lancaster UniversityFaculty of Health and Medicine, Lancaster UniversityAbstract 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 ).https://doi.org/10.1186/s13643-020-01525-0Informal caregiverDementiaModerate dementiaAdvanced dementiaMoral distressInternal conflicts |
| spellingShingle | Charles James Catherine Walshe Katherine Froggatt Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting Systematic Reviews Informal caregiver Dementia Moderate dementia Advanced dementia Moral distress Internal conflicts |
| 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 | Informal caregiver Dementia Moderate dementia Advanced dementia Moral distress Internal conflicts |
| url | https://doi.org/10.1186/s13643-020-01525-0 |
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