Hidden Care(e)rs: Supporting Informal Carers in the Workplace

2019 ◽  
pp. 105-127 ◽  
Author(s):  
Louise Oldridge
Keyword(s):  
Informal Carers

scholarly journals Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

2020 ◽  
pp. 026921632096649
Author(s):  
Kristin Bindley ◽  
Joanne Lewis ◽  
Joanne Travaglia ◽  
Michelle DiGiacomo
Keyword(s):  
Palliative Care ◽  
Social Welfare ◽  
End Of Life ◽  
Financial Burden ◽  
Qualitative Interviews ◽  
Housing Assistance ◽  
Structural Determinants ◽  
Psychosocial Sequelae ◽  
Framework Approach ◽  
Informal Carers

Background: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. Aim: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. Design: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants’ reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. Setting/participants: Twenty-one workers employed within three public services in Western Sydney were recruited. Results: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. Conclusions: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

Predictors of the Quality of Life of Informal Carers of Adults on the Autism Spectrum

2021 ◽  
Author(s):  
Marisse T. Sonido ◽  
Ye In Hwang ◽  
Preeyaporn Srasuebkul ◽  
Julian N. Trollor ◽  
Samuel R. C. Arnold
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum ◽  
Informal Carers

scholarly journals Dyads in Dementia Care: An International Perspective on Research Challenges and Opportunities

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 757-757
Author(s):  
Marie Boltz ◽  
Karin Wolf-Ostermann ◽  
Katie Maslow
Keyword(s):  
Daily Practice ◽  
Well Being ◽  
International Perspective ◽  
Dementia Care ◽  
Research Approach ◽  
Ethical Challenges ◽  
Research Strategies ◽  
Policy And Practice ◽  
Challenges And Opportunities ◽  
Informal Carers

Abstract Dementia poses a societal challenge that is life-changing not only for persons with dementia (PWD) but also for family members and friends (informal carers) directly involved in the care arrangement. Informal carers (IC) have typically poorer outcomes in terms of well-being, quality of life (QoL), health status, and use of health care resources. Dyads of PWD and IC living with dementia are characterized by strong reciprocal relationships and complex living contexts. Therefore, research should investigate home based dementia caregiving from a dyadic perspective to yield interventions that support the PWD, the IC, and the unit as a whole. However, it is an ongoing challenge to investigate dyadic needs and preferences in daily practice and develop effective interventions. Challenges are related to incomplete understanding of dyadic characteristics, attitudes and beliefs within the dyad, as well as how to adapt research approach to engage and retain the dyad in research. This international symposium will therefore address these issues. The first presentation will describe a typology of dementia care dyad characteristics and needs in Germany. The second presentation will examine the challenges and opportunities associated with recruiting and retaining dementia dyads. The third presentation will explore ethical challenges posed in communication with dyads and possible solutions for the researcher. The final presentation reports on the Meeting Centre Support Program as an example of an effective psychosocial intervention employing research strategies that transcend cultural barriers. Our discussant, Katie Maslow, will synthesize the presentations and lead a discussion of future directions for policy and practice.

scholarly journals Informal carer in Portugal: moving towards political recognition in Portugal

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
I Fronteira ◽  
J Simoes ◽  
G Augusto
Keyword(s):  
Informal Care ◽  
Long Term Care ◽  
Well Being ◽  
Oecd Countries ◽  
Low Fertility ◽  
Informal Carer ◽  
Term Care ◽  
System Perspective ◽  
Informal Carers

Abstract Informal care represents around 80% of all long term care provided in EU countries. Nevertheless, the needs for this type of care are expected to increase in the coming years in all OECD countries. Portugal is among the OECD countries with the highest ageing index (21.5% of the population was older than 65 years in 2017) due to high life expectancy and low fertility rates. As this demographic trend establishes, Portugal is expected to have more than 40% of the population over 65 years in 2037, and the expected prevalence of dementia is 3%, in 2050. In 2015 there were 2.1% of people over 65 receiving long-term care, representing 52% of all long-term care users. Around 38% were receiving care at home. It is estimated that 287,000 people in Portugal depend on informal carers. The agenda towards the official recognition of informal cares has been push forward in the country. Since 2015, several recommendations have been issued by the Parliament as well as legislative initiatives and a proposal for a Status of the Informal Carer is currently under discussion. We analyse the process of formulation of this policy in terms of sectors and stakeholders involved, definition and scope of informal carer, rights and obligations, role of the person being cared for, formal protection (e.g., labor, social, financial, training) and implementation. Recognition of the informal carer is a sector wide approach. One of the main features is the economic, social and labor protection mainly through reconciliation between work life and caring activities and promotion of the carer’s well being. Notwithstanding, and from a health system perspective, community health teams are to be the focal point for informal carers, supporting and providing specific training whenever needed. Despite its relevance, informal care should not be professionalized and responsibility of care should not be shifted from health services to informal carers. Key messages Needs for informal care are expected to increase in the coming years in OECD countries. Recognition of the informal carer is a sector wide approach.

scholarly journals Home care in dementia: The views of informal carers from a co-designed consultation

Dementia ◽  
2021 ◽  
pp. 147130122199050
Author(s):  
Elizabeth L Dalgarno ◽  
Vincent Gillan ◽  
Amy Roberts ◽  
Jean Tottie ◽  
David Britt ◽  
...  
Keyword(s):  
Home Care ◽  
Working Conditions ◽  
Public Involvement ◽  
Framework Analysis ◽  
Electronic Survey ◽  
The United Kingdom ◽  
People With Dementia ◽  
Dementia Research ◽  
Informal Carers ◽  
A Current

Background In the United Kingdom, there is a current priority for high-quality dementia care provided at home. However, home care or domiciliary care is an area where problems have been reported, in terms of a lack of consistency, coordination and appropriate responses to the specific needs of those with dementia. The views of informal carers, who often must respond to these problems when supporting relatives, are crucial in shedding light on the issues and in seeking to promote solutions. Methods This study explored the views of informal carers of those with dementia concerning home care, through a consultation using an electronic survey. The survey questions were designed by informal carers, through a public involvement group within an existing programme of dementia research. The survey elicited responses from 52 informal carers in 2017/18. The data were analysed qualitatively using framework analysis. Findings Carers’ views focused on the need for investment into meaningful personalisation, recognising the value of providing care and valuing formal carers, systemic failings of care coordination and provision and the importance of ongoing collaboration and care planning. Conclusion Based on a framework drawn from the views of informal carers themselves, this study articulated issues of concern for home care and its delivery for people with dementia. Attempts should be made to make dementia home care more consistently personalised, inclusive and collaborative with informal carers and key others involved. Further areas to explore include working conditions of formal carers and current models utilised in homecare provision.

scholarly journals The value of domiciliary medication reviews: a thematic analysis of patient views

2021 ◽  
Author(s):  
Patricia McCormick ◽  
Bridget Coleman ◽  
Ian Bates
Keyword(s):  
Thematic Analysis ◽  
Outcome Measure ◽  
Service Users ◽  
Structured Interviews ◽  
Main Outcome Measure ◽  
Healthcare Settings ◽  
Medication Reviews ◽  
Informal Carers ◽  
The Individual ◽  
Patient Centric

AbstractBackground Medication reviews are recognised as essential to tackling problematic polypharmacy. Domiciliary medication reviews (DMRs) have become more prevalent in recent years. They are proclaimed as being patient-centric but published literature mainly focuses on clinical outcomes. However, it is not known where the value of DMRs lies for patients who participate in them. Objective To determine the value of domiciliary medication reviews to service users. Setting Interviews took place with recipients of domiciliary medication reviews residing in the London boroughs of Islington and Haringey. Method Semi-structured interviews analysed using thematic analysis. Main outcome measure Themes and sub-themes identified from interview transcripts. Results Five themes were identified: advantages over traditional settings, attributes of the professional, adherence, levels of engagement and knowledge. Conclusion For many patients, the domiciliary setting is preferred to traditional healthcare settings. Patients appreciated the time spent with them during a DMR and felt listened to. Informal carers felt reassured that the individual medication needs of their relative had been reviewed by an expert.

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