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Understanding family caregivers' needs to support relatives with advanced progressive disease at home: An ethnographic study in rural Portugal

Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers' experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods: An ethnographic study comprising observations and interviews.

Tue, 08/11/2020 - 12:49

COPe-support-a multi-component digital intervention for family carers for people affected by psychosis: study protocol for a randomized controlled trial

Background Psychosis often causes significant distress and impacts not only in the individuals, but also those close to them. Many relatives and friends ('carers') provide long-term support and need resources to assist them. We have co-produced a digital mental health intervention called COPe-support (Carers fOr People with Psychosis e-support) to provide carers with flexible access to high quality psychoeducation and interactive support from experts and peers.

Mon, 08/10/2020 - 15:28

Identifying treatment effects of an informal caregiver education intervention to increase days in the community and decrease caregiver distress: a machine-learning secondary analysis of subgroup effects in the HI-FIVES randomized clinical trial

Background Informal caregivers report substantial burden and depressive symptoms which predict higher rates of patient institutionalization. While caregiver education interventions may reduce caregiver distress and decrease the use of long-term institutional care, evidence is mixed. Inconsistent findings across studies may be the result of reporting average treatment effects which do not account for how effects differ by participant characteristics.

Wed, 08/05/2020 - 13:24

Quality of life among caregivers of people with end-stage kidney disease managed with dialysis or comprehensive conservative care

Background: To measure health-related and care-related quality of life among informal caregivers of older people with end-stage kidney disease (ESKD), and to determine the association between caregiver quality of life and care recipient's treatment type. Methods: A prospective cross-sectional study was conducted. Three renal units in the UK and Australia were included.

Wed, 08/05/2020 - 13:06

It takes two to tango: Carers' reflections on their participation and the participation of people with dementia in the James Lind Alliance process

Background: Worldwide, patient and public involvement (PPI) in health research has grown steadily in recent decades. The James Lind Alliance (JLA) is one approach to PPI that brings patients, carers and clinicians together to identify priorities for future research in a Priority Setting Partnership (PSP). Our study aim was to describe the reflections of informal carers of people with dementia on the possibility of participating in the JLA's PSP process, for both themselves and the recipients of their care.

Tue, 08/04/2020 - 09:43

Informal support for people with Alzheimer's disease and related dementias in rural Uganda: a qualitative study

Background The generation of people getting older has become a public health concern worldwide. People aged 65 and above are the most at risk for Alzheimer's disease which is associated with physical and behavioral changes. This nurtures informal support needs for people living with dementia where their families together with other community members are the core providers of day to day care for them in the rural setting. Despite global concern around this issue, information is still lacking on informal support delivered to these people with dementia.

Mon, 08/03/2020 - 16:17

The social and economic burden on family caregivers for older adults in the Czech Republic

Background: In this paper, we analyse the economic burden of elder care in the Czech Republic by assessing how family members of senior citizens engage in caregiving. To do this, we examined the time and cost associated with caregiving as a function of age, gender, and income of the caregiver. Methods: A questionnaire comprising 17 items was used to gather data from 155 informal caregivers whose seniors are affiliated with 200 registered home care agencies.

Fri, 07/31/2020 - 16:12

Factors related to the burden of family caregivers of elderly patients with spinal Tumours in Northwest China

Background Family caregivers of elderly patients with spinal tumours experience considerable pain and burden during the care process. This study aims to investigate the factors associated with caregiver burden in family caregivers of elderly patients with spinal tumours. Methods A total of 220 elderly patients with spinal tumours (age >= 65 years) hospitalized at the spine centre of our hospital from January 2015 to December 2017 and their family caregivers were recruited for this cross-sectional study.

Thu, 07/30/2020 - 14:43

A nurse-led health coaching intervention for stroke survivors and their family caregivers in hospital to home transition care in Chongqing, China: a study protocol for a randomized controlled trial

Background Hospital to home transition care is a most stressful period for stroke survivors and their caregivers to learn self-management of stroke-related health conditions and to engage in rehabilitation. Health coaching has been identified as a strategy to enhance self-management of poststroke care at home. However, interventions in this field that are informed by a health coaching framework are scarce.

Thu, 07/30/2020 - 14:21

The care capacity goals of family carers and the role of technology in achieving them

Background: As global populations age, governments have come to rely heavily on family carers (FCs) to care for older adults and reduce the demands made of formal health and social care systems. Under increasing pressure, sustainability of FC's unpaid care work has become a pressing issue. Using qualitative data, this paper explores FCs' care-related work goals, and describes how those goals do, or do not, link to technology. Methods: We employed a sequential mixed-method approach using focus groups followed by an online survey about FCs' goals.

Thu, 07/30/2020 - 14:11

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