Exploring The Background, Context And Stressors Of Caregiving To Elderly Burned Patients: A Qualitative Inquiry

2021 ◽  
Author(s):  
Jonathan Bayuo ◽  
Patience Aniteye ◽  
Solina Richter ◽  
Pius Agbenorku
Keyword(s):  
Process Model ◽  
Burn Injury ◽  
Informal Caregivers ◽  
Informal Caregiving ◽  
Qualitative Inquiry ◽  
Lifestyle Changes ◽  
Elderly Persons ◽  
Home Setting ◽  
Qualitative Descriptive ◽  
Background Context

Abstract Elderly persons are at risk of experiencing burns and require support from both formal and informal caregivers. Informal caregiving in this situation has been minimally explored. Guided by the Stress Process Model, this study aimed at exploring the background, context, and stressors of informal caregivers of elderly burned persons during hospitalisation. A qualitative descriptive design was utilised. Purposive sampling approach was used to recruit fourteen (14) informal caregivers who rendered care to elderly burned persons during hospitalisation. Interviews were conducted and transcribed verbatim following which directed content analysis was undertaken deductively. Three categories and six sub-categories emerged which characterise the background, context, and stressors of informal caregiving to elderly burn patients. All the injuries occurred in the home setting and its sudden nature led to varied post-burn emotional responses which characterised the context of burns caregiving. Primary stressors that emerged were related to the injury, actual caregiving demand, and concerns regarding increasing frailty levels. Secondary stressors identified were financial concerns and lifestyle changes. The findings suggest that the occurrence of burn injury served as a precursor to post-burn stress response among informal caregivers. Increasing frailty levels, adequacy of household safety measures and financial issues were key concerns which emphasise the need for psychosocial/ transitional support, innovative healthcare financing measures and continuing education on burns prevention in the home setting.

scholarly journals Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting

2020 ◽  
Vol 9 (1) ◽  
Author(s):  
Charles James ◽  
Catherine Walshe ◽  
Katherine Froggatt
Keyword(s):  
Systematic Review ◽  
Negative Impact ◽  
Current Knowledge ◽  
Informal Caregivers ◽  
Informal Caregiving ◽  
Bibliographic Databases ◽  
Future Research ◽  
Advanced Dementia ◽  
Home Setting ◽  
Search Terms

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).

scholarly journals Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting

2020 ◽  
Author(s):  
Charles James ◽  
Catherine Walshe ◽  
Katherine Froggatt
Keyword(s):  
Systematic Review ◽  
Negative Impact ◽  
Current Knowledge ◽  
Informal Caregivers ◽  
Informal Caregiving ◽  
Bibliographic Databases ◽  
Future Research ◽  
Advanced Dementia ◽  
Home Setting ◽  
Search Terms

Abstract BackgroundThe 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.MethodsThis review adopts a narrative synthesis approach. A search will be conducted for studies written in 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 method 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 strategy 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.DiscussionPsychological 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 registrationThis review was registered and published online in the PROSPERO database of systematic reviews (www.crd.york.ac.uk/PROSPERO registration number: #CRD42020183649).

scholarly journals Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting

2020 ◽  
Author(s):  
Charles James ◽  
Catherine Walshe ◽  
Katherine Froggatt
Keyword(s):  
Systematic Review ◽  
Negative Impact ◽  
Current Knowledge ◽  
Informal Caregivers ◽  
Informal Caregiving ◽  
Bibliographic Databases ◽  
Future Research ◽  
Advanced Dementia ◽  
Home Setting ◽  
Search Terms

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. This protocol aims to explore these experiences.Methods: This review adopts a narrative synthesis approach. A search will be conducted for studies written in English language in the bibliographic databases MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science, and Academic Search Complete covering periods from 1984 to present. 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. Reference lists of included papers will also be searched for additional relevant citations. Search terms and strategy 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 registrationThis review has been submitted for registration at PROSPERO (crd.york.ac.uk/prospero/).

scholarly journals Protocol for a systematic review on the experience of informal caregivers for people with a moderate to advanced dementia within a domestic home setting

2020 ◽  
Author(s):  
Charles James ◽  
Catherine Walshe ◽  
Katherine Froggatt
Keyword(s):  
Systematic Review ◽  
Negative Impact ◽  
Current Knowledge ◽  
Informal Caregivers ◽  
Informal Caregiving ◽  
Bibliographic Databases ◽  
Future Research ◽  
Advanced Dementia ◽  
Home Setting ◽  
Search Terms

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 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 method 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 strategy 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).

scholarly journals Informal Caregiving and Disaster Risk Reduction: A Scoping Review

2021 ◽  
Vol 12 (2) ◽  
pp. 169-187
Author(s):  
Christina J. Pickering ◽  
Maya Dancey ◽  
Karen Paik ◽  
Tracey O’Sullivan
Keyword(s):  
Risk Reduction ◽  
Scoping Review ◽  
Disaster Risk Reduction ◽  
Informal Caregivers ◽  
Healthcare Services ◽  
Informal Caregiving ◽  
Disaster Risk ◽  
Healthcare Provision ◽  
Strategic Action ◽  
Factors Affecting

AbstractInformal caregivers are a population currently in the shadows of disaster risk reduction (DRR), and yet essential to the provision of healthcare services. This scoping review explored the literature to understand issues related to informal caregiving and promising practices to support resilience for disasters. Following guidelines for scoping review as outlined by Tricco et al. (2016), relevant publications were identified from five major databases—Medline, Embase, PubMed, Web of Science, and Scopus. Relevant studies referenced informal caregiving and disasters for a variety of population groups including children, people with disabilities or chronic illnesses, and older adults. Studies were excluded if they discussed formal caregiving services (for example, nursing), lacked relevance to disasters, or had insufficient discussion of informal caregiving. Overall, 21 articles met the inclusion criteria and were fully analyzed. Five themes were identified: (1) the need for education and training in DRR; (2) stressors around medication and supply issues; (3) factors affecting the decision-making process in a disaster; (4) barriers leading to disaster-related problems; and (5) factors promoting resilience. Recommended areas of strategic action and knowledge gaps are discussed. Many informal caregivers do not feel adequately prepared for disasters. Given the important role of informal caregivers in healthcare provision, preparedness strategies are essential to support community resilience for those requiring personal care support. By understanding and mobilizing assets to support the resilience of informal caregivers, we also support the resilience of the greater healthcare system and the community, in disaster contexts.

scholarly journals Seeking the balance between caregiving in dementia, family and employment: study protocol for a mixed methods study in Northern Germany

BMJ Open ◽  
2018 ◽  
Vol 8 (2) ◽  
pp. e019444 ◽  
Author(s):  
Lydia Neubert ◽  
Hans-Helmut König ◽  
Christian Brettschneider
Keyword(s):  
Mixed Methods ◽  
Labour Force ◽  
Informal Caregivers ◽  
Personal Characteristics ◽  
Labour Force Participation ◽  
Informal Caregiving ◽  
German Society ◽  
Mixed Methods Study ◽  
Northern Germany ◽  
Study Results

IntroductionThe debate on reconciliation between childcare and working has to be expanded to caregiving for the elderly, since the importance of informal caregiving will increase in the future due to populations’ ageing and women’s increasing labour force participation. Informal caregivers who are caring for the rising number of persons with dementia (PwD) are often female and subjected to high caregiving requirements. These are added to further demands emerging from their family and work life. How affected caregivers seek to balance those requirements depends on, inter alia, their own characteristics and the informal caregiving network to whom they relate. Both aspects were not yet considered in previous studies. This mixed methods study thus aims to explore the reconciliation between caregiving in dementia, family and employment by including different members of caregiving networks of home-dwelling PwD and by considering their personal characteristics.Methods and analysisBy purposive sampling, we include at least five caregiving networks of home-dwelling PwD; each of them consisting of at least three informal caregivers living in Northern Germany. Narrative interviews of participants will be recorded, transcribed verbatim and interpreted according to the Documentary Method (QUAL). By completing standardised questionnaires, participants will provide sociodemographic and psychographic data concerning themselves and the networks from whom they arise (quan). This supplemental, descriptive information will give further background to the themes and types emerging from the interviews. Hence, the quan-data enrich the QUAL-data by exploring the narratives of participants in the light of their personal and network-related characteristics.Ethics and disseminationEthical approval was obtained from the Ethics Committee of the German Society of Nursing Sciences. Study results will be disseminated through conference presentations and publications in peer-reviewed journals.Trial registration numberDRKS00012929.

scholarly journals Exploration of home care nurse’s experiences in deprescribing of medications: a qualitative descriptive study

BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e025606 ◽  
Author(s):  
Winnie Sun ◽  
Farah Tahsin ◽  
Caroline Barakat-Haddad ◽  
Justin P Turner ◽  
Cheryl Reid Haughian ◽  
...  
Keyword(s):  
Older Adults ◽  
Home Care ◽  
Medication Management ◽  
Informal Caregivers ◽  
Healthcare Providers ◽  
Learning Needs ◽  
Open Communication ◽  
Barriers And Enablers ◽  
Qualitative Descriptive ◽  
Home Care Nurses

ObjectivesThe aim of this study is to explore the barriers and enablers of deprescribing from the perspectives of home care nurses, as well as to conduct a scalability assessment of an educational plan to address the learning needs of home care nurses about deprescribing.MethodsThis study employed an exploratory qualitative descriptive research design, using scalability assessment from two focus groups with a total of 11 home care nurses in Ontario, Canada. Thematic analysis was used to derive themes about home care nurse’s perspectives about barriers and enablers of deprescribing, as well as learning needs in relation to deprescribing approaches.ResultsHome care nurse’s identified challenges for managing polypharmacy in older adults in home care settings, including a lack of open communication and inconsistent medication reconciliation practices. Additionally, inadequate partnership and ineffective collaboration between interprofessional healthcare providers were identified as major barriers to safe deprescribing. Furthermore, home care nurses highlighted the importance of raising awareness about deprescribing in the community, and they emphasised the need for a consistent and standardised approach in educating healthcare providers, informal caregivers and older adults about the best practices of safe deprescribing.ConclusionTargeted deprescribing approaches are important in home care for optimising medication management and reducing polypharmacy in older adults. Nurses in home care play a vital role in medication management and, therefore, educational programmes must be developed to support their awareness and understanding of deprescribing. Study findings highlighted the need for the future improvement of existing programmes about safer medication management through the development of a supportive and collaborative relationship among the home care team, frail older adults and their informal caregivers.

scholarly journals IDENTIFYING UNMET NEED IN INFORMAL CAREGIVING: DISPARITIES BY GENDER, EMPLOYMENT STATUS, AND RACE-ETHNICITY

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S219-S220
Author(s):  
Steven A Cohen ◽  
Furong Xu ◽  
Marissa R Meucci ◽  
Symone Woodham ◽  
Mary L Greaney
Keyword(s):  
Older Adults ◽  
Employment Status ◽  
Informal Caregivers ◽  
Unmet Need ◽  
Informal Caregiving ◽  
Care Recipient ◽  
National Study ◽  
Caregiver Health ◽  
White Caregivers ◽  
Race Ethnicity

Abstract Older adults, including those with dementia and other types of cognitive decline, often report a desire to remain in their homes. Over 50 million informal caregivers in the US provide needed in-home assistance to those in need, and there are well-documented disparities in informal caregiving responsibilities by sociodemographic factors , yet little is known about “unmet need” in informal caregiving. Therefore, the study’s objective is to examine discrepancies in unmet caregiving-related need by race/ethnicity, gender, and employment status. We abstracted data about caregivers from the 2017 National Study of Caregiving and linked these data to participants in the National Health and Aging Trends Study on caregivers of older adults (n=993). Generalized linear models were used to model the discrepancies between the number of activities of daily living for which the care recipient required assistance and the number of tasks caregivers provide, by race/ethnicity, gender, and employment status, accounting for confounders and complex sampling. Care recipients whose primary informal caregivers were employed were 69% more likely than those whose informal caregivers were not employed to experience unmet caregiving need (OR 1.69, 95%CI 1.19-2.41). A similar association between employment and unmet caregiving was observed among White caregivers (OR=1.79, 95% CI 1.16-2.69), while the association was not significant among Black caregivers (p=0.228). These findings suggest potentially addressable disparities in informal caregiving duties between Black and White caregivers, and can be used to inform and develop of policies and programs designed to improve caregiver health and reduce undue strain on caregiver health and wellbeing.

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