scholarly journals (How) Will it end? A qualitative analysis of free-text survey data on informal care endings

2021 ◽  
Author(s):  
Emma Kirby ◽  
Giselle Newton ◽  
Lukas Hofstätter ◽  
Sarah Judd-Lam ◽  
Iva Strnadová ◽  
...  
Keyword(s):  
Qualitative Analysis ◽  
Survey Data ◽  
Informal Care ◽  
Thematic Analysis ◽  
Care Recipient ◽  
Free Text ◽  
After Effects ◽  
Supported Accommodation ◽  
Care Recipients ◽  
Workforce Housing

The health and social ‘after-effects’ of caring are well established, yet the way carers experience pathways out of caring remains under-researched. In this article, we analyse qualitative free-text responses (n = 1,746) from a national survey of Australian carers to explore current and former carers’ concerns, opportunities and preferences around care endings. Our thematic analysis derived three key findings: (1) anticipation and fears for the care recipient; (2) prospects for life after caring; and (3) responsibility, recognition and loss. We engage with scholarship on the moralities of caring to discuss carers’ precarious relational and social positions, and their uncertainties around how caring ends.<br /><br />Key messages<br /><ul><li>Carers worry about how care recipients will be looked after in the future in the carer’s absence, especially in situations where the carer is frail or ageing.</li><br /><li>Carers also worry about their own futures and life after caring, including fears about re-entering the workforce, housing and superannuation, as well as issues of loss and loneliness.</li><br /><li>For some carers, the imagined care ending does not ultimately constitute the end of their caring responsibility in practice; for example, many carers continue to provide considerable care for those in supported accommodation.</li><br /><li>Understanding how carers experience and make sense of care endings is important for improving support for current and former carers.</li></ul>

scholarly journals Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry (Preprint)

2020 ◽  
Author(s):  
Yan Du ◽  
Kristi Paiva ◽  
Adrian Cebula ◽  
Seon Kim ◽  
Katrina Lopez ◽  
...  
Keyword(s):  
Alzheimer Disease ◽  
Family Caregivers ◽  
Thematic Analysis ◽  
Diabetes Management ◽  
The United States ◽  
Qualitative Inquiry ◽  
Care Recipient ◽  
Online Forum ◽  
Care Recipients ◽  
Management Interventions

BACKGROUND Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome. OBJECTIVE This study aims to explore diabetes-related topics in the Alzheimer’s Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. METHODS User posts on the Alzheimer’s Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher’s input as deemed necessary. RESULTS Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. CONCLUSIONS The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted.

scholarly journals The Effects of Home Care Provider Mix on the Care Recipient: An International, Systematic Review of Articles from 2000 to 2020

2021 ◽  
Vol 42 (1) ◽  
Author(s):  
Norma B. Coe ◽  
R. Tamara Konetzka ◽  
Melissa Berkowitz ◽  
Emily Blecker ◽  
Courtney H. Van Houtven
Keyword(s):  
Systematic Review ◽  
Health Care ◽  
Informal Care ◽  
Well Being ◽  
Health Care Use ◽  
Care Recipient ◽  
Publication Date ◽  
Formal Care ◽  
Care Providers ◽  
Care Recipients

In this systematic review, we examine the literature from 2000 to 2020 to ascertain whether we can make strong conclusions about the relative benefit of adding informal care or formal care providers to the care mix among individuals receiving care in the home, specifically focusing on care recipient outcomes. We evaluate how informal care and formal care affect (or are associated with) health care use of care recipients, health care costs of care recipients, and health outcomes of care recipients. The literature to date suggests that informal care, either alone or in concert with formal care, delivers improvements in the health and well-being of older adults receiving care. The conclusions one can draw about the effects of formal care are less clear. Expected final online publication date for the Annual Review of Public Health, Volume 42 is April 2021. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

Worry and time: the unseen costs of informal care

2016 ◽  
Vol 12 (4) ◽  
pp. 249-260 ◽  
Author(s):  
Tanisha Jowsey ◽  
Lyndall Strazdins ◽  
Laurann Yen
Keyword(s):  
Chronic Illness ◽  
Social Status ◽  
Informal Care ◽  
Thematic Analysis ◽  
Sense Of Self ◽  
Care Recipient ◽  
Care Practice ◽  
Structured Interviews ◽  
Loved One ◽  
Informal Carers

Objectives The objective of this study is to examine the experiences of informal carers in terms of how their time spent caring is related to worry. Is worry about a care recipient a care practice, and if so, to what extent it can be understood temporally? Methods Classical phenomenology underpinned this study. Three qualitative studies of people living with chronic illness in Australia were conducted between 2009 and 2013. Semi-structured interviews were conducted. Interviews were audio recorded and transcribed verbatim. Phenomenological thematic analysis of the data was undertaken. Results Twenty-five informal carers participated. The findings pivot around three interconnected themes: time, worry and cost. Worry was identified as a temporally bound unseen cost to carers that informs carer identity irrespective of culture, ethnicity, or social status. Discussion Worry is a practice that most carers report engaging in and it is one that comes with a temporal cost—it keeps people busy looking after the needs of others during the day and it keeps some people awake when they would rather be sleeping. Worry takes time and effort, it informs people’s construction of their own sense of self, motivates acts of care, and informs carers’ imaginings of what their future and that of their loved one(s) may entail.

Free-text comments as a tool for developing the self-report method: Parents’ responses to a survey on violence against children

2016 ◽  
Vol 51 (1) ◽  
pp. 58-75 ◽  
Author(s):  
Noora Ellonen ◽  
Monica Fagerlund ◽  
Tarja Pösö
Keyword(s):  
Survey Data ◽  
Thematic Analysis ◽  
The Self ◽  
Self Report ◽  
Free Text ◽  
Violent Behaviour ◽  
Violence Against Children ◽  
Making Sense ◽  
Report Measure

Self-report measures are used to study the degree of victimisation in children that have experienced violence. Very little methodological attention is, however, paid to development of these measures. In this article, we will analyse parents’ free-text comments in response to a self-report survey of their own violent behaviour towards their children. Themes presented by parents concerning violence against children as a phenomenon will be analysed and methodological input of these free-text comments in a self-report survey will be examined. Analysis is based on survey data collected in Finland in 2011 (N = 3170) including 2047 free-text comments. Based on the thematic analysis of those comments, four themes were phrased: making sense of the responses, defining violence, children and violence in society and experiencing exclusion. Parents’ comments with respect to these themes reflected the complexity of what actually constitutes violence against children. Analysis also showed that free-text comments are a valuable and ethically sound tool for developing the self-report measure.

Verandering in de intensiteit van mantelzorg tijdens de eerste COVID-19 lockdown in 2020 in Nederland

2021 ◽  
Vol 96 (3) ◽  
pp. 411-439
Author(s):  
Ellen Verbakel ◽  
Klara Raiber ◽  
Alice de Boer
Keyword(s):  
The Netherlands ◽  
Informal Care ◽  
Informal Caregivers ◽  
Care Recipient ◽  
Formal Care ◽  
Care Provision ◽  
Care Model ◽  
Living Situation ◽  
Care Recipients ◽  
Care Situation

Abstract Changes in informal care provision during the first COVID-19 lockdown in 2020 in the Netherlands This study investigates to what extent the intensity of informal care provision has changed during the first lockdown due to the COVID-19 pandemic in the spring of 2020 in the Netherlands, whether these changes differed by the living situation of the care recipient, and whether these changes were associated with changes in indicators for ‘being able to’, ‘have to’ and ‘want to’ provide care (determinants of the Informal Care Model). We collected data in July 2020 among informal caregivers aged 78 and younger who indicated to provide care in March 2020 in the LISS-panel (N = 1,270 care situation of 1,014 caregivers). We found that, on average, informal care provision was reduced during the lockdown; caregivers of care recipients living in care institutions were the most likely to reduce or stop caregiving, and caregivers who helped someone in their own household were most likely to have increased their intensity. Feeling less restricted by the corona measures reduced the likelihood to stop or lower care provision and increased the likelihood of increasing care; being confronted with a reduction of formal care for the care recipient was related to a higher likelihood of increasing care; and stronger concerns about the care recipient increased the likelihood of intensifying care and prevented from stopping or reducing care. We conclude that the COVID-19 measures significantly impacted the amount of informal care provision and that the Informal Care Model provides a useful basis for explaining changes in informal care intensity.

scholarly journals Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry

10.2196/17851 ◽  
2020 ◽  
Vol 22 (7) ◽  
pp. e17851
Author(s):  
Yan Du ◽  
Kristi Paiva ◽  
Adrian Cebula ◽  
Seon Kim ◽  
Katrina Lopez ◽  
...  
Keyword(s):  
Alzheimer Disease ◽  
Family Caregivers ◽  
Thematic Analysis ◽  
Diabetes Management ◽  
The United States ◽  
Qualitative Inquiry ◽  
Care Recipient ◽  
Online Forum ◽  
Care Recipients ◽  
Management Interventions

Background Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome. Objective This study aims to explore diabetes-related topics in the Alzheimer’s Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. Methods User posts on the Alzheimer’s Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher’s input as deemed necessary. Results Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. Conclusions The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted.

scholarly journals Linkages between informal and formal care-givers in home-care networks of frail older adults

2015 ◽  
Vol 36 (8) ◽  
pp. 1604-1624 ◽  
Author(s):  
MARIANNE JACOBS ◽  
THEO VAN TILBURG ◽  
PETER GROENEWEGEN ◽  
MARJOLEIN BROESE VAN GROENOU
Keyword(s):  
Older Adults ◽  
Home Care ◽  
Informal Care ◽  
Community Dwelling ◽  
Care Recipient ◽  
Formal Care ◽  
Care Giver ◽  
Care Network ◽  
Care Givers ◽  
Care Recipients

ABSTRACTIn ageing societies, policy makers aim for more contact between informal and formal care-givers as it may enhance the quality of care. So far, the linkage between formal and informal care-givers is generally studied from a one-sided or a single dyadic perspective, without taking into account that care networks of community-dwelling older adults often exist of multiple informal and formal care-givers. The current study examines discussion of care between all potential informal–formal care-giver dyads in a care network, and relates this to characteristics of the older care recipient, the care network and the care-givers. Seventy-four Dutch older care recipients provided information on all care-givers who helped with five different types of tasks; 410 care-givers reported on the contact between all care-givers identified. Multi-level logistic regression was conducted in 2,150 informal–formal care-giver dyads and revealed that in 26 per cent of all these dyads discussion on care occurred. This was more likely when both care-givers performed multiple types of tasks, the informal care-giver was residing with the care recipient, and contact within the formal and the informal sub-network was higher. To enhance discussion of care between informal and formal care-givers in care networks where no discussion occurs at all, home-care organisations may need to allocate formal care-givers who form a bridge with an extra-residential care-giver of care recipients living alone.

scholarly journals The 2020 Portrait of American Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 681-681
Author(s):  
Regina Shih
Keyword(s):  
Family Member ◽  
Family Caregivers ◽  
Care Recipient ◽  
Health Conditions ◽  
Complex Care ◽  
The Past ◽  
Care Recipients ◽  
The Us ◽  
National Alliance

Abstract The prevalence of caregiving for an adult or child with special needs has increased significantly in the past five years (from 18.2% to over 21.3%), driven by an increase in the prevalence of caring for a family member or friend aged 50 and older. At the same time, care recipients have greater health and functional needs that necessitate care from others in comparison to 2015. These new 2020 data from the Caregiving in the US Survey by the National Alliance for Caregiving suggests that not only are more American adults taking on the role of caregiver, but they are doing so for increasingly complex care situations. This paper addresses the prevalence of caregiving including the demographics of family caregivers, relationship between the caregiver and the care recipient, health conditions of the care recipient, and living situations of care recipients and their caregivers.

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