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We examine the unmet needs for information and support of cancer patients and carers. A questionnaire study was performed among patients (n = 135) and carers (n = 73) at Kuopio University Hospital, Finland. Data are analysed using SPSS 27 by t-test, cross-tabulation and cluster and variance analyses. Patients and carers received less support than information. Older and less-educated individuals and males had more unmet needs. Carers received less information and support than patients. Carers expressed unmet needs particularly when they had limited opportunities to discuss with healthcare professionals. Individual needs of patients and carers should be addressed throughout the cancer care pathway.
Although the European Commission has promoted the use of co-creation methodology for social services, this innovative practice has not yet been uniformly introduced in Europe. The SoCaTel platform was released with open access to promote and implement a digital co-creation platform involving all stakeholders, especially older adults and their carers, in long-term care. Using an innovative methodology applied in four European sites (Spain, Finland, Ireland and Hungary), in this article, we investigate the acceptance of this technology among older adults, its effectivity as a virtual support tool in the context of COVID-19 and its potential for developing digital repertoires.
This article seeks to advance our understanding of the care experiences of people living with the effects of disability, ageing and other social locations during the COVID-19 pandemic. Drawing on key informant interviews (n = 8) and results from an anonymous online survey (n = 36), this article provides evidence of how people with disabilities and older adults in Ontario, Canada, experienced disruptions in different types of care in their multiple caring relationships. The results describe why they were not able to access the care that they needed during a period when activities began to resume and how their caring relationships had been disrupted. The impact of disruption on people with disabilities, older adults and others in their care relationships was exacerbated by barriers rooted in ableism, ageism and other forms of exclusion. This study demonstrates the importance of addressing unmet care needs by moving beyond the dichotomy of ‘carer’ and ‘cared for’.
The UK’s adult social care system faces severe challenges, including funding shortages, unmet needs and an overburdened workforce. Resultantly, there is a push for high-quality evidence in service enhancement and resource allocation. Using evidence to improve services is essential, but questions arise about best practices for identifying ‘what works’, integrating evidence into everyday practice and addressing resource constraints. Findings from a 2021 UK survey and consultative forums with stakeholders across adult social care underscore concerns about implementing evidence-based practices and highlight the need for increased collaboration to expand the evidence base. These findings shed light on stakeholders’ perspectives regarding factors shaping adult social care practices, opportunities for evidence to play a greater role, definitions of valid evidence and priorities for change. Improved communication and coordination within the sector are crucial to enhance evidence-based decision making, focus limited resources on proven strategies and shape a more effective, evidence-informed adult social care system.
While welfare states and work organisations often provide policies to facilitate a reconciliation of paid work and informal care, the literature pays little attention to employees’ actual capabilities to engage with such policies. In this article, we apply the capabilities approach to interview data from managers and employees in the Netherlands to understand employees’ use or non-use of the policies. We found that job flexibility may help workers reconcile work and care in the short run but that respondents with greater job flexibility reported more health problems than respondents with less flexibility, which calls into question the sustainability of these policies.
Using a propensity score matching approach, this study evaluates the effect of caring on the physical health, mental health and subjective well-being of Chilean older people. The average treatment effect was not significant in any of the outcomes to physical health. However, older carers – and those who care intensely – were more likely to have depressive and anxious symptomatology and lower life satisfaction than older non-carers. Interventions should consider strategies that favour mental health and avoid caregiver burden, considering the interaction between caring and the challenges of ageing. This could improve the quality of life of carers and those being cared for.
Sleep has been recognised as compromised in dementia care. This study aims to represent the experiences and needs of informal carers via sleep-related accounts. Retrospective interviews were conducted with 20 carers concerning sleep changes across the trajectory of dementia care. Key interactive narratives were around: ‘sleep as my sacrifice’; tensions between identities of being a ‘sleeper’ versus ‘guardian’; and ‘sleep as a luxury’. Maintaining healthy sleep and preferable sleep practices is challenging while balancing the responsibilities of dementia-related care. Acknowledging sleep as a sociological practice enables a greater understanding of carers’ nuanced experience and support needs.
This article expands understanding of the experiences of working carers by analysing their care activities and applying cognitive appraisal theory to explore how different resources affect carers’ appraisal processes. A total of 18 carers from the UK and Hong Kong took part in a qualitative daily diary study. The contributions of the article include providing a broader conceptualisation of care activities and considering the implications of cognitive appraisals and resources in the experience of combining work and care. The findings provide insights into future research design and support development.
This article explores the historical development of Carer’s Allowance in the UK, alongside legal challenges and recent proposals for changes to it in Scotland. Eligibility criteria for receipt of this allowance construct carers as people of ‘working age’ who provide care within dyadic relationships and exclude people whose unpaid caring work is more complex and/or interdependent. Disabled people are simultaneously constructed as dependent recipients of this care. Carer’s Allowance provides symbolic but conditional recognition of unpaid caring, while doing little to meet the financial or support needs of carers. This symbolism reinforces the role of gendered families as the main providers of care and of disabled people as dependent.
Many countries are reforming long-term care to deal with the social risks created by demographic and social change. However, the passage of legislation is often followed by a new set of challenges as policy is implemented. This article examines England’s Care Act 2014 through Compton and ‘t Hart’s criteria of policy endurance to demonstrate the importance of assessing effectiveness at multiple time points. Early success in ‘implementation readiness’ was followed by the abandonment or dilution of key commitments. Yet, the Act’s foundational principles – well-being, prevention and capping private spending – continue to shape care policy, much as its original supporters hoped.
