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The Experience of Housing Needs Among Families Caring for Children With Medical Complexity

Background: Caregivers of children with medical complexity (CMC) face many stressors related to their child's medical condition(s). Financial stress and its impact on housing has been reported to be a challenge among this population. However, unique housing challenges specific to CMC, including disability accommodations in the home and housing space and layout, have yet to be examined in the literature. Methods: We conducted 20 individual semistructured interviews with parents of CMC.

Sun, 02/27/2022 - 16:41

Children With Special Health Care Needs and Forgone Family Employment

BACKGROUND: Family income is known to affect child health, but this relationship can be bidirectional. We sought to characterize this relationship by quantifying forgone family employment (FFE) due to a child's health condition in families of children with special health care needs (CSHCN) with updated figures. METHODS: We conducted a secondary data analysis from the 2016-2017 National Survey of Children's Health. CSHCN with previously employed caregivers were included (N = 14 050).

Fri, 01/28/2022 - 15:30

Factors Influencing Burden in Spouse-Caregivers of Patients with Chronic-Acquired Brain Injury

In this cross-sectional study, we assess associated factors of burden in spouse-caregivers of patients with acquired brain injury (ABI) in the chronic phase. 35 spouse-caregivers (71% female, mean age ± SD : 55.7 ± 11.1 y) of patients with mild/moderate ABI (29% female, mean age ± SD : 57.5 ± 10.7 y), admitted to the intensive rehabilitation unit of the Institute S. Anna (Crotone, Italy) between January 2013 and December 2017, were contacted 2 years postinjury and asked to complete a series of questionnaires.

Sat, 01/23/2021 - 15:20

Development of the life change adaptation scale for family caregivers of individuals with acquired brain injury

Aim: Life changes due to the sudden onset of acquired brain injury (ABI) are drastic personal and social changes that require adaptation and are also an important indicator of the quality of life of family caregivers. However, there are no instruments for evaluating life change adaptation among family caregivers of individuals with acquired brain injury. This study aimed to develop the Life Change Adaptation Scale (LCAS) for family caregivers of individuals with ABI and examine its reliability and validity.

Fri, 01/22/2021 - 18:03

After providing end of life care to relatives, what care options do family caregivers prefer for themselves?

Objectives: We examined how caregivers who had cared for a relative at end of life (EoL) wished to be cared for in the event that they experienced advanced dementia or physical disability in the future, and what factors influenced their preferences for EoL care. Methods: In this mixed-methods study, 83 participants, recruited from multiple sources in Israel, were interviewed concerning socio-demographic factors, health status, past experience with EoL, preference for extension of life vs.

Mon, 11/16/2020 - 12:19

Predictors of Secondary Role Strains Among Spousal Caregivers of Older Adults With Functional Disability

Background and Objectives: Aging spouses commonly care for a partner with functional disability, but little is known about how spousal caregiving may impact different life domains. This study evaluated how caregiving characteristics are associated with secondary role strains among spousal caregivers. Research Design and Methods: This cross-sectional study examined 367 spousal caregivers and their partners from the 2011 National Health and Aging Trends Study and National Study of Caregiving.

Fri, 09/20/2019 - 12:35

Work-Related Opportunity Costs Of Providing Unpaid Family Care In 2013 And 2050

Older Americans living in the community who need help with functional limitations overwhelmingly rely on unpaid care, which is often provided by working-age family members. This study assessed the impact of unpaid family caregiving on the likelihood of working and hours worked for caregivers and calculated the related cost of forgone earnings in 2013 and 2050. The current economic cost is about $67 billion, which by midcentury will likely double to $132-$147 billion, fueled primarily by the growth of the disabled older population and the increased share of better-educated caregivers.

Wed, 09/11/2019 - 12:56

Co-design of a carers strategy for New South Wales: reflections on a new approach to collaborative policy making with carers

NSW is Australia's most populous state, with 7.7 million people (about a third of the Australian population). There are 905,000 carers in NSW. Carers provide ongoing unpaid support to people who need it because of their disability, chronic illness, mental ill-health, dementia or frail age.

Wed, 04/10/2019 - 15:45

Informal care giving to more disabled people with multiple sclerosis

Purpose. About 30% of the people with multiple sclerosis (MS) require some form of home care assistance and 80% of that assistance is provided by informal or unpaid care givers. This study focusses on the care givers for 530 more disabled people with MS, with the objective of learning more about informal care giving to people with greater dependency and need for assistance.

Method. The data presented in this study were collected in a national survey of 530 people who provided informal care to more disabled people with MS.

Thu, 07/20/2017 - 15:24

The experiences of young carers: a meta-synthesis of qualitative findings

The aim of this meta-synthesis was to explore young carers' accounts of caring for a family member with an illness, difficulty or disability, and to promote a phenomenological understanding of their experiences. A meta-ethnographic method of meta-synthesis was adopted, utilising the process of reciprocal translation to synthesise 11 qualitative studies. The synthesis yielded four main concepts: (1) becoming a caring person; (2) the adult child - the marks of being different; (3) who is a carer?

Thu, 07/20/2017 - 15:22

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