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Differentiating needs of informal caregivers of individuals with ALS across the caregiving course: a systematic review

Background: Informal caregivers of people with amyotrophic lateral sclerosis (ALS) experience a range of needs across the course of the disease. For the provision of adequate support, an examination of the empirical evidence is necessary.; Aim: The purpose of the systematic review was to synthesize evidence of needs of informal caregivers of people with ALS at different stages of caregiving.; Method: Systematic review of empirical research on needs of ALS informal caregivers in both English and German, from January 2000 to August 2018.

Fri, 03/19/2021 - 11:37

Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID-19 pandemic

Background The COVID-19 pandemic has caused many adults with intellectual/developmental disabilities (IDD) to lose their daily routines and social support, and as a result, many adults with IDD are increasingly reliant on their family caregivers. Siblings often play a crucial support role for their brothers and sisters with IDD. As such, this study aimed to describe the experiences of adult siblings of people with IDD during the COVID-19 pandemic.

Sat, 01/23/2021 - 16:25

Caring in mind? Professionals’ awareness of young carers and young adult carers in Switzerland

Findings from international research emphasis the need of these young people to be identified and recognised. Therefore, a nationwide quantitative study of professionals' awareness was conducted in the Swiss context. Data were collected from professionals working in education, healthcare and social services.

Sat, 01/23/2021 - 16:13

A systematic review of interventions for family caregivers who care for patients with advanced cancer at home

Objective: To examine the characteristics of interventions to support family caregivers of patients with advanced cancer. Methods: Five databases (CINAHL, Medline, PsycINFO, Web of Science, and the Cochrane Library) were searched for English language articles of intervention studies utilizing randomized controlled trials or quasi-experimental designs, reporting caregiver-related outcomes of interventions for family caregivers caring for patients with advanced cancer at home. Results: A total of 11 studies met the inclusion criteria.

Thu, 01/14/2021 - 14:34

'A fifty mile round trip to change a lightbulb': An exploratory study of carers' experiences of providing help, care and support to families and friends from a distance

While the role of carers has been widely investigated, the experiences of those who care from a distance have been little explored, especially in the United Kingdom. However, contemporary patterns of family life suggest that this may be a significant experience for many. This exploratory study employed an anonymous online survey, conducted April–November 2017, to collect data about specific issues (experiences, challenges and satisfactions) faced by carers living at a distance requiring at least 1 hr travel time (each way) from the person they support.

Mon, 12/07/2020 - 14:57

Examining the support needs of older male spousal caregivers of people with a long‐term condition: A systematic review of the literature

Aim The aim of this review was to identify and synthesise literature reporting on support needs of older male caregivers, who are providing care for a chronically ill spouse/partner at home. Background Traditionally, informal caregiving has been perceived as a feminised activity. Consequently, caregiving research has been dominated by female samples, and male caregivers are grossly under‐represented.

Sun, 11/29/2020 - 12:28

Evaluation of START (STrAtegies for RelaTives) adapted for carers of people with Lewy body dementia

Family carers of people with Lewy body dementia (LBD) have a particularly high burden of care, as LBD has a faster rate of decline, greater physical dependence and additional neuropsychiatric disturbances compared with other dementias. Despite this, there are no evidence-based support services designed specifically for LBD carers.

Sun, 11/29/2020 - 12:05

After the care journey: exploring the experiences of family carers of people living with dementia

While the burden of caring for people living with dementia has been well documented, considerably less is known about how carers transition into post-care life. This study aimed to understand the experiences of primary family care-givers of people with dementia after the person with dementia has died. A specific focus of the research was understanding the barriers to transitioning into a positive post-care life, and facilitators that help sustain carers as they move forward after their care journey has ended.

Mon, 11/16/2020 - 12:23

Effect of an innovative model of complexity care on family caregiver experience Qualitative study in family practice

Objective To investigate the experiences of family caregivers who participated in an innovative model of interprofessional team-based care specifically designed for elderly patients with complex care needs. Design Qualitative study. Setting Large academic family practice in Toronto, Ont. Participants Family caregivers of elderly patients who had attended the IMPACT (Interprofessional Model of Practice for Aging and Complex Treatments) clinic (N=13).

Mon, 08/03/2020 - 16:31

The Development of a Quality of Life Scale for Informal Carers for Older Adults

Background: The aim of the study was to develop a multidimensional quality of life instrument suitable for use among individuals across cultures who have an informal care role for older persons. Methods: Participants were informal carers of older adults in the United Kingdom (n = 308), United States (n = 164), and China (n = 131).

Fri, 07/31/2020 - 16:02

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