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Alone in a Crowd? Parents of Children with Rare Diseases' Experiences of Navigating the Healthcare System

A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition to their parental role. Despite the prevalence of rare diseases among children, there has been little research focused on parents' experiences of navigating the healthcare system, a gap we begin to address in this study.

Sun, 01/01/2023 - 14:58

Effect of Employment Status on the Association Among Sleep, Care Burden, and Negative Affect in Family Caregivers

Objective: To examine the effect of employment status on sleep, care burden, and negative affect among family caregivers (FCs) at home. Methods: An intensive longitudinal design was applied in which 25 FCs underwent in-home assessments for up to 56 days. At baseline, demographic data and employment status were collected. FCs wore a wrist-worn device with an accelerometer to assess objective total sleep time (TST) for consecutive 24-hour periods.

Sat, 08/27/2022 - 11:58

Do Informal Caregivers Expect to Die Earlier? A Longitudinal Study with a Population-Based Sample on Subjective Life Expectancy of Informal Caregivers

Introduction: Subjective life expectancy is a good predictor of health and could therefore be a relevant factor in the informal caregiving context. However, no research has been conducted on the perception of life expectancy by informal caregivers. This is the first study that examines the association between transitioning into, and out of, informal caregiving, and subjective life expectancy, and the relevance of employment status and gender for these associations.

Wed, 02/09/2022 - 12:05

The demographic characteristics and economic activity patterns of carers over 50: evidence from the English Longitudinal Study of Ageing

Studies on informal care provision have often focused on the provision of care for persons with a long term physical or mental ill-health or disability, or problems related to old age. However, the provision of care and support more broadly, for example in the form of childcare for grandchildren, can also impact on various aspects of a carer's life, such as their employment (if under the state retirement age), lifetime earnings and, by extension, pension income in later life.

Thu, 07/20/2017 - 15:22

Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work

Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being.

Thu, 07/20/2017 - 15:19

Caregiving for Parents and In-Laws: Commonalities and Differences

This study examined support, stress, and well-being between adults who provide care for an aging and disabled parent and those who care for an aging and disabled parent-in-law. The study utilized a sample of individuals caring for a parent (n = 77), individuals caring for an in-law (n = 26) and a comparison group of noncaregivers (n = 1,939) from the Midlife Development in the United States study. In-law caregivers provided more financial assistance but adult child caregivers provided more emotional support and unpaid work.

Thu, 07/20/2017 - 15:17

Family caregiver strategies to encourage older relatives with dementia to use social services

Aim: To elicit the strategies used by Japanese family caregivers in the community to encourage older relatives with dementia to use adult daycare and respite stays.

Background: Older adults with dementia often require adult daycare and respite stays for their family caregivers to gain respite from care-giving. However, persons with dementia often face difficulty in new environments and timely access to sufficient services may be difficult to achieve. Few studies have examined how family caregivers encourage their service use.

Design: A qualitative method.

Thu, 07/20/2017 - 15:15

A comparison of working versus nonworking family caregivers of stroke survivors

Because of the trend toward shorter hospital stays, family caregivers of stroke survivors are expected to accept more responsibility for helping survivors during the subacute recovery process. The caregiver role is associated with negative health outcomes, yet existing literature differs on whether work status is a contributor. The purpose of this secondary analysis was to examine how caregiving affects employment and to compare characteristics of working and nonworking caregivers.

Thu, 07/20/2017 - 15:14

Group of support and mutual help for informal carers of dependent elderly people

Bringing into operation a group of support and mutual help for informal carers of dependent elderly people at 'Vargas' Health Centre is a necessity that cant be postponed any longer.The project which we want to carry out takes into account the welfare of both the carer and the elderly and consist of supporting the carers by listening to them, by raising their awareness about the importance of the work they do, both for the relative they look after and for society as a whole, and by teaching them to look after themselves during the caring period.

Thu, 07/20/2017 - 15:14

Caregiver burden, time spent caring and health status in the first 12 months following stroke

OBJECTIVE: To quantify time caring, burden and health status in carers of stroke patients after discharge from rehabilitation; to identify the potentially modifiable sociodemographic and clinical characteristics associated with these outcomes. METHODS: Patients and carers prospectively interviewed 6 (n=71) and 12 (n=57) months after discharge. Relationships of carer and patient variables with burden, health status and time analysed by Gaussian and Poisson regression. RESULTS: Carers showed considerable burden at 6 and 12 months.

Thu, 07/20/2017 - 15:11

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