Pub Date : 2023-05-15DOI: 10.1332/239788221x16813137336637
K.V.G.S.G. Vithana, T. A. Asurakkody, D. Perera
Spinal cord injury paraplegia is a significant health problem in Sri Lanka. This study explores the psychological experiences of family carers of people with such a condition. A descriptive phenomenological study was conducted with 17 parent, sibling, spouse and adult carers. Thematic analysis revealed four themes related to: carer emotions regarding the caring process; feelings related to the family member’s condition; beliefs beyond the physical world; and behaviour changes due to psychological distress. The findings will help develop interventions for the psychological needs of Sri Lankan carers and may provide insight into the experiences of similar Asian communities living globally.
{"title":"Psychological experiences of family carers of people with spinal cord injury paraplegia: an explorative qualitative study","authors":"K.V.G.S.G. Vithana, T. A. Asurakkody, D. Perera","doi":"10.1332/239788221x16813137336637","DOIUrl":"https://doi.org/10.1332/239788221x16813137336637","url":null,"abstract":"Spinal cord injury paraplegia is a significant health problem in Sri Lanka. This study explores the psychological experiences of family carers of people with such a condition. A descriptive phenomenological study was conducted with 17 parent, sibling, spouse and adult carers. Thematic analysis revealed four themes related to: carer emotions regarding the caring process; feelings related to the family member’s condition; beliefs beyond the physical world; and behaviour changes due to psychological distress. The findings will help develop interventions for the psychological needs of Sri Lankan carers and may provide insight into the experiences of similar Asian communities living globally.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2023-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49035340","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 : 2023-05-15DOI: 10.1332/239788221x16819168412272
Faye Wright, M. Breheny, R. Gibson
This study represents the experiences of informal carers of people with dementia concerning periods of transition into formal care. Retrospective interviews with 18 carers identified the key narratives: ‘This is why I had to’, ‘They said I need to’ and ‘It was a last resort’. These indicate a sense of carers’ responsibility in decision making and the undesirable assumptions around the move. However, the narrative of ‘I made the right decision’ was common after transition. Findings represent the nuanced carer experience around transitions, providing insight into the experiences of families living with dementia and informing future care planning.
{"title":"Carers’ experiences of the transition of people with dementia into residential aged care: a narrative analysis","authors":"Faye Wright, M. Breheny, R. Gibson","doi":"10.1332/239788221x16819168412272","DOIUrl":"https://doi.org/10.1332/239788221x16819168412272","url":null,"abstract":"This study represents the experiences of informal carers of people with dementia concerning periods of transition into formal care. Retrospective interviews with 18 carers identified the key narratives: ‘This is why I had to’, ‘They said I need to’ and ‘It was a last resort’. These indicate a sense of carers’ responsibility in decision making and the undesirable assumptions around the move. However, the narrative of ‘I made the right decision’ was common after transition. Findings represent the nuanced carer experience around transitions, providing insight into the experiences of families living with dementia and informing future care planning.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2023-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47733583","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 : 2023-04-24DOI: 10.1332/239788223x16801795894143
A. Gil
The article’s aim is to analyse the way in which informal care has become the object of public policy in Portugal. The law is compared with those of other European countries, and the article identifies issues around the framing of the law and where it leads to adverse consequences and social risks to family carers. Two focus groups were conducted with caregivers. A thematic content analysis allowed the identification of difficult caregiving experiences and gender inequalities throughout the cycle of family life. Selectivity criteria, based on income, limit access for thousands of carers in need, and the new care regulation has become a policy to combat poverty.
{"title":"Itineraries and contradictions of a family policy: the Informal Caregiver Statute in Portugal","authors":"A. Gil","doi":"10.1332/239788223x16801795894143","DOIUrl":"https://doi.org/10.1332/239788223x16801795894143","url":null,"abstract":"The article’s aim is to analyse the way in which informal care has become the object of public policy in Portugal. The law is compared with those of other European countries, and the article identifies issues around the framing of the law and where it leads to adverse consequences and social risks to family carers. Two focus groups were conducted with caregivers. A thematic content analysis allowed the identification of difficult caregiving experiences and gender inequalities throughout the cycle of family life. Selectivity criteria, based on income, limit access for thousands of carers in need, and the new care regulation has become a policy to combat poverty.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2023-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47451531","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 : 2023-04-21DOI: 10.1332/239788221x16795074425323
T. Geisen, K. Krajic, S. Nideröst, Ingrid Mairhuber, Charlotte Dötig, Andrin Altherr, Salome Schenk, R. Schweighoffer
The significance of formal and informal supports and barriers on the company level for combining employment and informal care for older adults has rarely been investigated. This is one of the main findings of a systematic literature review. This systematic literature review elucidates what can be learned from research on practices that have been developed to maintain a sustainable work–care balance. Research indicates that firms have rarely actively addressed the topic and many seem unaware of the challenges employees are facing and the support they need. If firms offer support, they often favour individual, case-based solutions, whereas systematic approaches seem less likely to be put in place. In general, the findings show that better support for companies and for carers would seem important, even urgent, but the knowledge base for offering this support is not well developed.
{"title":"The relevance of the workplace for combining employment and informal care for older adults: results of a systematic literature review","authors":"T. Geisen, K. Krajic, S. Nideröst, Ingrid Mairhuber, Charlotte Dötig, Andrin Altherr, Salome Schenk, R. Schweighoffer","doi":"10.1332/239788221x16795074425323","DOIUrl":"https://doi.org/10.1332/239788221x16795074425323","url":null,"abstract":"The significance of formal and informal supports and barriers on the company level for combining employment and informal care for older adults has rarely been investigated. This is one of the main findings of a systematic literature review. This systematic literature review elucidates what can be learned from research on practices that have been developed to maintain a sustainable work–care balance. Research indicates that firms have rarely actively addressed the topic and many seem unaware of the challenges employees are facing and the support they need. If firms offer support, they often favour individual, case-based solutions, whereas systematic approaches seem less likely to be put in place. In general, the findings show that better support for companies and for carers would seem important, even urgent, but the knowledge base for offering this support is not well developed.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2023-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46968203","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 : 2023-04-19DOI: 10.1332/239788221x16800800382732
Gayle Madden, K. Harrison Dening, K. de Vries
COVID-19 has meant that, globally, people, organisations and governments have had to make huge changes in life and work. The aim of this study is to explore the impact of working during the first wave of COVID-19 on Admiral Nurse practice (specialists in dementia care who support families affected by dementia). Semi-structured interviews were used to gather data from 19 Admiral Nurses. Themes drawn from the data show that Admiral Nurses experienced an immediate sense of impotence and helplessness, and, from there, moved through a process of adaptation to reach a new level of competence. This research provides insight into the experiences of Admiral Nurses and their adaptability in extraordinary circumstances.
{"title":"A time for adaptation and reflection: the experience of Admiral Nurses during COVID-19","authors":"Gayle Madden, K. Harrison Dening, K. de Vries","doi":"10.1332/239788221x16800800382732","DOIUrl":"https://doi.org/10.1332/239788221x16800800382732","url":null,"abstract":"COVID-19 has meant that, globally, people, organisations and governments have had to make huge changes in life and work. The aim of this study is to explore the impact of working during the first wave of COVID-19 on Admiral Nurse practice (specialists in dementia care who support families affected by dementia). Semi-structured interviews were used to gather data from 19 Admiral Nurses. Themes drawn from the data show that Admiral Nurses experienced an immediate sense of impotence and helplessness, and, from there, moved through a process of adaptation to reach a new level of competence. This research provides insight into the experiences of Admiral Nurses and their adaptability in extraordinary circumstances.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2023-04-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47809571","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 : 2023-04-14DOI: 10.1332/239788223x16789866214981
Fleur Sharafizad, E. Franken, Uma Jogulu, S. Teo
Despite the reported positive impact of informal personal care on the cared for, carers themselves experience a range of adverse health outcomes. In addition, Australian care policies primarily target the cared for, while the needs of carers tend to be disregarded. This article draws on data collected from 36 interviews with carers who were offered an opportunity to engage in a pilot training programme focused on enhancing opportunities. Viewed through the lens of self-determination theory, the training served as a stimulus in supporting carers’ psychological needs, demonstrating that more targeted, nuanced and meaningful supports are required to maintain carers’ motivation and well-being.
{"title":"“Being a carer, you just get forgotten!”: exploring the experiences and opportunities of informal primary carers in Australia","authors":"Fleur Sharafizad, E. Franken, Uma Jogulu, S. Teo","doi":"10.1332/239788223x16789866214981","DOIUrl":"https://doi.org/10.1332/239788223x16789866214981","url":null,"abstract":"Despite the reported positive impact of informal personal care on the cared for, carers themselves experience a range of adverse health outcomes. In addition, Australian care policies primarily target the cared for, while the needs of carers tend to be disregarded. This article draws on data collected from 36 interviews with carers who were offered an opportunity to engage in a pilot training programme focused on enhancing opportunities. Viewed through the lens of self-determination theory, the training served as a stimulus in supporting carers’ psychological needs, demonstrating that more targeted, nuanced and meaningful supports are required to maintain carers’ motivation and well-being.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2023-04-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49119046","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 : 2023-04-07DOI: 10.1332/239788221x16782989603397
A. de Ruiter, Sara Dekking, C. Leget, P. Dronkers
Words matter, especially in times of crisis. This article analyses the complexities of political discourse on vulnerability by considering the case of the Dutch COVID-19 response. Our study finds that the framing of vulnerability as a predetermined and naturalised condition, linked to old age and pre-existing medical conditions, draws attention away from aspects of precarisation tied to economic position, social class, cultural background and living conditions. This rhetorical strategy can be understood as a practice of de-responsibilisation through which attention is rhetorically diverted from the way(s) in which political authorities are implicated in producing, exacerbating or failing to mitigate vulnerabilities.
{"title":"Balancing words, balancing lives: framing vulnerability in times of crisis","authors":"A. de Ruiter, Sara Dekking, C. Leget, P. Dronkers","doi":"10.1332/239788221x16782989603397","DOIUrl":"https://doi.org/10.1332/239788221x16782989603397","url":null,"abstract":"Words matter, especially in times of crisis. This article analyses the complexities of political discourse on vulnerability by considering the case of the Dutch COVID-19 response. Our study finds that the framing of vulnerability as a predetermined and naturalised condition, linked to old age and pre-existing medical conditions, draws attention away from aspects of precarisation tied to economic position, social class, cultural background and living conditions. This rhetorical strategy can be understood as a practice of de-responsibilisation through which attention is rhetorically diverted from the way(s) in which political authorities are implicated in producing, exacerbating or failing to mitigate vulnerabilities.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2023-04-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47666289","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 : 2023-04-07DOI: 10.1332/239788221x16789016484824
Yvonne Prinzellner, Alisa Simon, Danielle Drachmann, Mouna Ghanem, L. Münter, S. Yghemonos
In this ‘Debates and issues’ article, we want to highlight: the issue of a lack of male informal carers; the underlying reasons for it, such as stereotypes, socialisation and representations; and the implications for society, for example, gender inequality and the growing need for informal carers due to shifting demographics in Western societies. In our opinion, there is a lack of research on men in (informal) care work and too little conversation on the reasons why, for example, toxic masculinities, the lack of role models and the neglect of the care sector by policymakers.
{"title":"Care–life balance: a new normal for men too?","authors":"Yvonne Prinzellner, Alisa Simon, Danielle Drachmann, Mouna Ghanem, L. Münter, S. Yghemonos","doi":"10.1332/239788221x16789016484824","DOIUrl":"https://doi.org/10.1332/239788221x16789016484824","url":null,"abstract":"In this ‘Debates and issues’ article, we want to highlight: the issue of a lack of male informal carers; the underlying reasons for it, such as stereotypes, socialisation and representations; and the implications for society, for example, gender inequality and the growing need for informal carers due to shifting demographics in Western societies. In our opinion, there is a lack of research on men in (informal) care work and too little conversation on the reasons why, for example, toxic masculinities, the lack of role models and the neglect of the care sector by policymakers.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2023-04-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42871089","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 : 2023-03-23DOI: 10.1332/239788221x16770625208518
I. Kabelenga
Drawing on qualitative interviews and focus groups with 35 community leaders, this article investigates how community leaders understand norms of care for older people in Zambia. I ask what leads older people in Zambia to receive good care from family. The findings show that across both rural and urban settings, respondents related profoundly powerful norms of reciprocity in both family and community care, with older people viewed as reaping what they have sown in terms of religious and economic contributions throughout their lives. The study raises challenging questions from a rights-based perspective as to who is deserving of care.
{"title":"Perceptions of community leaders about normative understandings of good family care of older people in rural and urban Zambia","authors":"I. Kabelenga","doi":"10.1332/239788221x16770625208518","DOIUrl":"https://doi.org/10.1332/239788221x16770625208518","url":null,"abstract":"Drawing on qualitative interviews and focus groups with 35 community leaders, this article investigates how community leaders understand norms of care for older people in Zambia. I ask what leads older people in Zambia to receive good care from family. The findings show that across both rural and urban settings, respondents related profoundly powerful norms of reciprocity in both family and community care, with older people viewed as reaping what they have sown in terms of religious and economic contributions throughout their lives. The study raises challenging questions from a rights-based perspective as to who is deserving of care.","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2023-03-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45627659","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 : 2023-03-22DOI: 10.1332/239788221x16770613505728
E. Moore, D. Price
{"title":"Family care of older people in Southern Africa","authors":"E. Moore, D. Price","doi":"10.1332/239788221x16770613505728","DOIUrl":"https://doi.org/10.1332/239788221x16770613505728","url":null,"abstract":"","PeriodicalId":43660,"journal":{"name":"International Journal of Care and Caring","volume":null,"pages":null},"PeriodicalIF":1.4,"publicationDate":"2023-03-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44070847","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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