Opting out and topping up reconsidered: Informal care under uncertain altruism

Abstract Background South Carolina (SC) remains one of the most heavily affected states for both HIV and HCV infections. Males account for the majority of cases. Implementation of universal opt-out testing has improved screening rates but not much has been published describing the characteristics of those who opt out of testing. This becomes important as 10-50% of patients have opted out in previous studies. Methods Between February and August 2019, we conducted a quality improvement (QI) project which implemented opt- out HIV-HCV testing at a single primary care resident clinic in SC with the primary aim of increasing screening rates for HIV-HCV by 50%. Secondary aims included describing the demographic characteristics of the opt-out population. Persons were considered eligible for testing if they were between the ages of 18-65 years for HIV and 18-74 years for HCV. This was prior to the USPSTF 2020 guidelines which recommend HCV screening for adults aged 18-79 years. A retrospective chart review was used to obtain screening rates, opt status and demographic data. Logistic regression and the firth model were used to determine linkages between categorical variables. We present 3-month data. Results 1253 patients were seen between May 1, 2019- July 31, 2019 (See Table 1). 985 (78%) were eligible for HIV testing. 482 (49%) were tested for HIV as a result of our QI project and all tests were negative. 212 (22%) of eligible patients opted out of HIV testing. Males were 1.59 times more likely to opt out (p=0.008). (see Table 2,3) Regarding HCV, 1136 (90.7%) were deemed eligible for testing. 503 (44%) were tested for HCV as a result of our QI project. 12 (2.4%) were HCV antibody positive with viremia. 11 (90%) of antibody positive with viremia cases were in the 1945-1965 birth cohort (see Table 4). 244 (21%) opted out of HCV testing. Males and persons without a genitourinary chief complaint were more likely to opt out (p=0.02). Table 1: Demographic characteristics of the population seen at the internal medicine resident clinic between May- July 2019 Table 2: Relationship between demographic variables and the odds of being tested for HIV or HCV within the last 12 months. Logistic Model. Table 3: Relationship between demographic variables and the odds of opting out of testing for HIV or HCV. Firth Model. Conclusion Although implementation of routine HIV-HCV opt-out testing led to increased screening rates for both HIV and HCV, roughly 1 in 5 eligible patients chose to opt out of testing. Males were more likely to opt out despite accounting for the majority of newly diagnosed HCV cases. Future studies investigating drivers for opting-out in the male population could improve testing and assist with early diagnosis. Table 4: Characteristics of patients newly diagnosed with HCV positive with viremia. Disclosures All Authors: No reported disclosures

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The determinants of the intensity of home-based informal care among cancer patients in receipt of home-based palliative care

Palliative Medicine ◽

10.1177/0269216320979277 ◽

2020 ◽

pp. 026921632097927

Author(s):

Jiaoli Cai ◽

Li Zhang ◽

Denise Guerriere ◽

Peter C Coyte

Keyword(s):

Palliative Care ◽

Marital Status ◽

Cancer Patients ◽

Informal Care ◽

Instrumental Variables ◽

Spousal Caregivers ◽

Living Alone ◽

Policy Makers ◽

Cohort Design ◽

Home Based

Background: Understanding the determinants of the intensity of informal care may assist policy makers in the identification of supports for informal caregivers. Little is known about the utilization of informal care throughout the palliative care trajectory. Aim: The purpose of this study was to analyze the intensity and determinants of the use of informal care among cancer patients over the palliative care trajectory. Design: This was a longitudinal, prospective cohort design conducted in Canada. Regression analysis using instrumental variables was applied. Setting/participants: From November 2013 to August 2017, a total of 273 caregivers of cancer patients were interviewed biweekly over the course of the care recipient’s palliative care trajectory. The outcome was the number of hours of informal care provided by unpaid caregivers, that is, hours of informal care. Results: The number of hours of informal care increased as patients approached death. Home-based nursing care complemented, and hence, increased the provision of informal care. Patients living alone and caregivers who were employed were associated with the provision of fewer hours of informal care. Spousal caregivers provided more hours of informal care. Patient’s age, sex, and marital status, and caregiver’s age, sex, marital status, and education were associated with the number of hours of informal care. Conclusions: The intensity of informal care was determined by predisposing, enabling, and needs-based factors. This study provides a reference for the planning and targeting of supports for the provision of informal care.

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Multimorbidity Patterns and 6-Year Risk of Institutionalization in Older Persons: The Role of Social Formal and Informal Care

Journal of the American Medical Directors Association ◽

10.1016/j.jamda.2020.12.040 ◽

2021 ◽

Author(s):

Alessandra Marengoni ◽

Clare Tazzeo ◽

Amaia Calderón-Larrañaga ◽

Albert Roso-Llorach ◽

Graziano Onder ◽

...

Keyword(s):

Informal Care ◽

Older Persons

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Opting Out: Anorexia, Asexuality, and Early Modern Women

Early Modern Women ◽

10.1353/emw.2020.0009 ◽

2020 ◽

Vol 15 (1) ◽

pp. 119-130

Author(s):

Simone Chess

Keyword(s):

Early Modern ◽

Opting Out ◽

Early Modern Women

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Preface: Opting Out

Public Things ◽

10.1515/9780823276431-001 ◽

2020 ◽

pp. xi-xiv

Keyword(s):

Opting Out

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Uptake of Childcare Arrangements—Grandparental Availability and Availability of Formal Childcare

Social Sciences ◽

10.3390/socsci10020050 ◽

2021 ◽

Vol 10 (2) ◽

pp. 50

Author(s):

Naomi Biegel ◽

Karel Neels ◽

Layla Van den Berg

Keyword(s):

Decision Making ◽

Informal Care ◽

Regression Models ◽

Local Level ◽

Formal Care ◽

Multinomial Regression ◽

Contextual Data ◽

Care Arrangement ◽

Combined Use ◽

Formal Childcare

Grandparents constitute an important source of childcare to many parents. Focusing on the Belgian context, this paper improves our understanding of childcare decision-making by investigating how formal childcare availability and availability of grandparents affect childcare arrangements. By means of multinomial regression models we simultaneously model uptake of formal and informal childcare by parents. Combining linked microdata from the Belgian censuses with contextual data on childcare at the level of municipalities, we consider formal childcare availability at a local level, while including a wide array of characteristics which may affect grandparental availability. Results indicate that increasing formal care crowds-out informal care as the sole care arrangement, whereas combined use of formal and informal care becomes more prevalent. Characteristics indicating a lack of grandmaternal availability increase uptake of formal care and inhibit to a lesser extent the uptake of combined formal and informal care. While increasing formal care substitutes informal care use, the lack of availability of informal care by grandparents may be problematic, particularly for those families most prone to use informal care.

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OLDER ADULTS PROVIDING INFORMAL CARE TO OTHERS IN THE COMMUNITY: PREVALENCE AND CHARACTERISTICS

Innovation in Aging ◽

10.1093/geroni/igy023.2715 ◽

2018 ◽

Vol 2 (suppl_1) ◽

pp. 736-736

Author(s):

V Edwards ◽

E Bouldin ◽

C Taylor ◽

L McGuire

Keyword(s):

Older Adults ◽

Informal Care

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Informal carer in Portugal: moving towards political recognition in Portugal

European Journal of Public Health ◽

10.1093/eurpub/ckz187.178 ◽

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.

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