Pub Date : 2024-07-01DOI: 10.1332/23978821y2024d000000061
Marcus Kristian Giacci, Gisselle Gallego
Identifying informal carers is a complex task due to the diverse nature of caring roles and relationships. A systematic review of the literature was conducted to explore methods for informal carer identification. Six articles were reviewed. Methods for identification included population surveys, analysis of electronic medical records and a multifaceted approach focused on awareness and education in healthcare settings. There was considerable variability in the identification methods, the definitions of informal carers and the effectiveness of the methods to identify them. The review indicates a lack of consensus on the most effective methods for identifying informal carers.
{"title":"Methods for the identification of informal carers in the health and care systems: a systematic review","authors":"Marcus Kristian Giacci, Gisselle Gallego","doi":"10.1332/23978821y2024d000000061","DOIUrl":"https://doi.org/10.1332/23978821y2024d000000061","url":null,"abstract":"Identifying informal carers is a complex task due to the diverse nature of caring roles and relationships. A systematic review of the literature was conducted to explore methods for informal carer identification. Six articles were reviewed. Methods for identification included population surveys, analysis of electronic medical records and a multifaceted approach focused on awareness and education in healthcare settings. There was considerable variability in the identification methods, the definitions of informal carers and the effectiveness of the methods to identify them. The review indicates a lack of consensus on the most effective methods for identifying informal carers.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141694962","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-17DOI: 10.1332/23978821y2024d000000056
Duncan Uist Fisher
{"title":"Care Activism: Migrant Domestic Workers, Movement-Building, and Communities of Care by Tungohan Ethel (2023)","authors":"Duncan Uist Fisher","doi":"10.1332/23978821y2024d000000056","DOIUrl":"https://doi.org/10.1332/23978821y2024d000000056","url":null,"abstract":"","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2024-06-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141335057","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-13DOI: 10.1332/23978821y2024d000000052
J. Linares-Roake, Andrea V. Breen, Heather Chalmers, Stephanie Martin
This article engages with transcript data from a larger longitudinal study of young carers’ experiences during COVID-19. We carefully engage with the transcripts of three young carers to think with the messiness of care in ways that extend beyond dyadic caregiver and care receiver categorization. Our work adopts Lonkila’s notion of ‘care-full’ research practices, which acknowledges multidirectional and complex care across the research apparatus. Pulling from multiple theoretical approaches, including feminist care ethics, critical disability studies and critical posthumanism, we follow the tendrils of care and think with the ways in which care may be affective, productive, confusing and oppressive.
{"title":"Young caregivers and COVID-19: a care-full approach through (post-)qualitative enquiry","authors":"J. Linares-Roake, Andrea V. Breen, Heather Chalmers, Stephanie Martin","doi":"10.1332/23978821y2024d000000052","DOIUrl":"https://doi.org/10.1332/23978821y2024d000000052","url":null,"abstract":"This article engages with transcript data from a larger longitudinal study of young carers’ experiences during COVID-19. We carefully engage with the transcripts of three young carers to think with the messiness of care in ways that extend beyond dyadic caregiver and care receiver categorization. Our work adopts Lonkila’s notion of ‘care-full’ research practices, which acknowledges multidirectional and complex care across the research apparatus. Pulling from multiple theoretical approaches, including feminist care ethics, critical disability studies and critical posthumanism, we follow the tendrils of care and think with the ways in which care may be affective, productive, confusing and oppressive.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2024-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141345727","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-10DOI: 10.1332/23978821y2024d000000050
Lorna Montgomery, Charlene M. McShane, Olinda Santin, Florence Nakaggwa, P. Agaba, J. Apio, Angela N. Kawooya, A. Komuhangi, Christopher Jenkins, Mandi MacDonald, Florence Githinji, C. Misinde, R. C. Nanyonga
Resource-limited health systems in sub-Saharan Africa struggle to provide population-wide high-quality primary healthcare, with particular concerns relating to professional workforce issues and the role of family caregivers. This qualitative study design explores the perceptions of (n = 19) health and social care professionals of the challenges they face in caring for individuals living with non-communicable diseases in Uganda. Identified challenges resulted from staffing and resource limitations, with wider issues relating to poverty and the burden placed on carers. As non-communicable diseases continue to rise, these empirical findings can inform developments in policy and service delivery in low and middle-income country contexts.
{"title":"Caring for people with non-communicable diseases: the views and experiences of health and social care professionals in Uganda","authors":"Lorna Montgomery, Charlene M. McShane, Olinda Santin, Florence Nakaggwa, P. Agaba, J. Apio, Angela N. Kawooya, A. Komuhangi, Christopher Jenkins, Mandi MacDonald, Florence Githinji, C. Misinde, R. C. Nanyonga","doi":"10.1332/23978821y2024d000000050","DOIUrl":"https://doi.org/10.1332/23978821y2024d000000050","url":null,"abstract":"Resource-limited health systems in sub-Saharan Africa struggle to provide population-wide high-quality primary healthcare, with particular concerns relating to professional workforce issues and the role of family caregivers. This qualitative study design explores the perceptions of (n = 19) health and social care professionals of the challenges they face in caring for individuals living with non-communicable diseases in Uganda. Identified challenges resulted from staffing and resource limitations, with wider issues relating to poverty and the burden placed on carers. As non-communicable diseases continue to rise, these empirical findings can inform developments in policy and service delivery in low and middle-income country contexts.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2024-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141365236","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-10DOI: 10.1332/23978821y2024d000000051
K. Runswick-Cole, Martina Smith, Sara Ryan, Christopher Hatton
Carers’ mental health is often the focus of policy and research in Global North contexts. Research exploring carers’ views often uses survey methods to collect information about their experiences and views of services and support. However, the experiences of adult carers of adults with learning disabilities have often been marginalised within these domains. Here, we report on how, working together with family carers, we disrupted survey methods and generated new insights into what matters to family carers when sharing their experiences of care, mental health, services and support, as well as the crucial role of co-production in this research.
{"title":"‘Should we even have questions?’ From survey to exhibition – co-producing research about ‘mental health’ with carers and adults with learning disabilities","authors":"K. Runswick-Cole, Martina Smith, Sara Ryan, Christopher Hatton","doi":"10.1332/23978821y2024d000000051","DOIUrl":"https://doi.org/10.1332/23978821y2024d000000051","url":null,"abstract":"Carers’ mental health is often the focus of policy and research in Global North contexts. Research exploring carers’ views often uses survey methods to collect information about their experiences and views of services and support. However, the experiences of adult carers of adults with learning disabilities have often been marginalised within these domains. Here, we report on how, working together with family carers, we disrupted survey methods and generated new insights into what matters to family carers when sharing their experiences of care, mental health, services and support, as well as the crucial role of co-production in this research.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2024-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141366419","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-10DOI: 10.1332/23978821y2024d000000053
I. Chis
Mainstream feminist perspectives on social reproduction often portray non-disabled women as active providers of a service (care) to those assumed to be its passive, agency-less recipients. In response, this article accounts for social reproduction as a key factor in the reproduction of disabling capitalist social relations and argues for an understanding of social reproduction that no longer obscures the contributions of those considered to be ‘cared for’. Alternatives to what is termed here ‘the service model of care’ can be established through mobilising and organising for In(ter)dependent Living through an anti-productivist politics whose social relations prefigure alternatives against and beyond disabling capitalism.
{"title":"Contesting the service model of ‘care’ in disabling capitalism: a Disability Politics perspective","authors":"I. Chis","doi":"10.1332/23978821y2024d000000053","DOIUrl":"https://doi.org/10.1332/23978821y2024d000000053","url":null,"abstract":"Mainstream feminist perspectives on social reproduction often portray non-disabled women as active providers of a service (care) to those assumed to be its passive, agency-less recipients. In response, this article accounts for social reproduction as a key factor in the reproduction of disabling capitalist social relations and argues for an understanding of social reproduction that no longer obscures the contributions of those considered to be ‘cared for’. Alternatives to what is termed here ‘the service model of care’ can be established through mobilising and organising for In(ter)dependent Living through an anti-productivist politics whose social relations prefigure alternatives against and beyond disabling capitalism.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2024-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141364364","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-06DOI: 10.1332/23978821y2024d000000049
Lisa Smyth
This article examines the connections between solidarity and social esteem for unpaid care. Focusing on the moral emotions experienced by unpaid carers during the UK’s COVID-19 pandemic, the implications for the social value accorded to care are considered. Analysis focuses on 32 qualitative interviews with 25 family carers in Northern Ireland during 2020 and 2021. Conceiving of solidarity as a norm whose strength and reach can be gauged through emotional experience, the article argues that unpaid carers’ perceptions of general indifference to caregiving indicate the weakness of democratic solidarity in this neoliberal context, with significant consequences for access to social esteem.
{"title":"Solidarity and social esteem: the case of unpaid carers during COVID-19 in Northern Ireland","authors":"Lisa Smyth","doi":"10.1332/23978821y2024d000000049","DOIUrl":"https://doi.org/10.1332/23978821y2024d000000049","url":null,"abstract":"This article examines the connections between solidarity and social esteem for unpaid care. Focusing on the moral emotions experienced by unpaid carers during the UK’s COVID-19 pandemic, the implications for the social value accorded to care are considered. Analysis focuses on 32 qualitative interviews with 25 family carers in Northern Ireland during 2020 and 2021. Conceiving of solidarity as a norm whose strength and reach can be gauged through emotional experience, the article argues that unpaid carers’ perceptions of general indifference to caregiving indicate the weakness of democratic solidarity in this neoliberal context, with significant consequences for access to social esteem.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2024-06-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141380941","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-03DOI: 10.1332/23978821y2024d000000047
Helena Larsson, S. Saarelainen, M. Sjöberg, Jessie Dezutter, G. Haugan
This study expands our understanding of how existential loneliness and meaning-in-life might be connected in the lived experience of nursing home residents. A secondary analysis of interviews with nursing home residents (n = 8) was conducted. The analysis starts inductively using template analysis, and ends deductively, with a theoretical framework guiding the process. Existential loneliness and meaning-in-life are prominent in nursing home residents’ everyday lives and relate to relationships and vulnerable situations involving (1) being seen, (2) trust in life and (3) looking forward. To enhance existential well-being in nursing home residents, facilitating meaningful relationships and experiences is essential.
{"title":"Existential loneliness and meaning-in-life in the lived experience of nursing home residents","authors":"Helena Larsson, S. Saarelainen, M. Sjöberg, Jessie Dezutter, G. Haugan","doi":"10.1332/23978821y2024d000000047","DOIUrl":"https://doi.org/10.1332/23978821y2024d000000047","url":null,"abstract":"This study expands our understanding of how existential loneliness and meaning-in-life might be connected in the lived experience of nursing home residents. A secondary analysis of interviews with nursing home residents (n = 8) was conducted. The analysis starts inductively using template analysis, and ends deductively, with a theoretical framework guiding the process. Existential loneliness and meaning-in-life are prominent in nursing home residents’ everyday lives and relate to relationships and vulnerable situations involving (1) being seen, (2) trust in life and (3) looking forward. To enhance existential well-being in nursing home residents, facilitating meaningful relationships and experiences is essential.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2024-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141272465","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The significant demand for and reduction in mental health services during the COVID-19 pandemic resulted in family carers providing higher levels and increased hours of support of increased complexity. Guided conversations within seven co-designed online focus groups with 73 family carers, representing diverse communities and ages, explored the experiences of and desired changes for mental health service provision. Six themes emerged: service users’ experiences; the effects of system failures and service provisions; the impact on carers’ health and well-being; unmet community needs; responsive innovations; and policy and practice recommendations. Co-producing research with families elevated family voices and supported carers in expressing their experiences, needs and rights.
{"title":"Families supporting people with mental health challenges during the COVID-19 pandemic: learnings from a co-designed and co-delivered study","authors":"Caroline Walters, Hayley Solich, Sharon Lawn, Eileen McDonald, Melissa Petrakis","doi":"10.1332/23978821y2024d000000043","DOIUrl":"https://doi.org/10.1332/23978821y2024d000000043","url":null,"abstract":"The significant demand for and reduction in mental health services during the COVID-19 pandemic resulted in family carers providing higher levels and increased hours of support of increased complexity. Guided conversations within seven co-designed online focus groups with 73 family carers, representing diverse communities and ages, explored the experiences of and desired changes for mental health service provision. Six themes emerged: service users’ experiences; the effects of system failures and service provisions; the impact on carers’ health and well-being; unmet community needs; responsive innovations; and policy and practice recommendations. Co-producing research with families elevated family voices and supported carers in expressing their experiences, needs and rights.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2024-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141102982","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-20DOI: 10.1332/23978821y2024d000000044
Chloe Waterman
{"title":"Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer’s Disease by Post Stephen G. (2022)","authors":"Chloe Waterman","doi":"10.1332/23978821y2024d000000044","DOIUrl":"https://doi.org/10.1332/23978821y2024d000000044","url":null,"abstract":"","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2024-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141119696","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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