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Relieving distressed caregivers (ReDiCare study): study protocol of a randomized pragmatic trial

Background: Providing care for someone with a disease or chronic condition can have a negative psychological, physical, social, and economic impact upon informal caregivers. Despite the socio-economic relevance and more than three decades of caregiver intervention research only very few translational efforts of successful interventions are reported. Still less of these interventions have been implemented into routine services.

Sat, 06/18/2022 - 13:48

Reference values for the short forms of the Singapore Caregiver Quality of Life Scale

Purpose: The 15- and 10-item short forms of the Singapore Caregiver Quality of Life Scale (SCQOLS-15 and SCQOLS-10) were recently developed as a quick assessment of caregiver quality of life. Reference values describing the distribution of the total and domain scores are available for the full-length version, but they are not yet available for the short forms. This study aimed to estimate the reference values for the short forms.

Sat, 06/18/2022 - 11:27

A randomized wait-list controlled trial of a social support intervention for caregivers of patients with primary malignant brain tumor

Background: Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain tumors based on the rapid progression of disease, including physical and cognitive debilitation. Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life. However, barriers to obtaining needed social support exist for caregivers.

Fri, 06/17/2022 - 17:29

Quality of life of children with spinal muscular atrophy and their caregivers from the perspective of caregivers: a Chinese cross-sectional study

Background: Spinal muscular atrophy (SMA) is an autosomal-recessive motor neuron disease leading to dysfunction of multiple organs. SMA can impair the quality of life (QoL) of patients and family. We aimed to evaluate the QoL of children with SMA and their caregivers and to identify the factors associated with QoL in a cross-sectional study conducted in China. Methods: We recruited 101 children aged 0–17 years with SMA and their caregivers from a children’s hospital in China. Twenty-six children had type I SMA, 56 type II and 19 type III.

Fri, 06/17/2022 - 15:25

A Qualitative Study of Older Patients' and Family Caregivers' Perspectives of Transitional Care From Hospital to Home

Background and Purpose: The need for high-quality long-term healthcare services is increasing across the globe as the population ages. Strategies for improving transitional care from hospital to home are needed. This study aimed to explore the perspectives of patients aged 65 years and over and their family caregivers transitioning from hospital to home in an urban area of Turkey.

Mon, 06/13/2022 - 19:04

A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer

Background: For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers' feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services.

Mon, 06/13/2022 - 18:57

Qualitative research of informal caregivers’ personal experiences caring for older adults with dementia in Lithuania

Background: In many communities around the world, informal caregivers of older adults with dementia represent an essential, yet often underappreciated, source of long-term care. The present study aimed to determine the personal experiences of such caregivers, which could be instrumental for developing means of improving the quality of care for both care receivers and their informal caregivers. Methods: Five semi-structured focus-group discussions were held. The participants (n = 31) were all informal caregivers of older adults with dementia.

Mon, 06/13/2022 - 18:51

A qualitative investigation into the impact of hemophagocytic lymphohistiocytosis on children and their caregivers

Background: Primary hemophagocytic lymphohistiocytosis (pHLH) is a rare and life-threatening disorder, which usually occurs during infancy or early childhood and is characterized by abnormal activation of the immune system. However, the burden of pHLH on children and their families has not been previously evaluated.

Mon, 06/13/2022 - 14:16

A qualitative exploration of the unmet information needs of Chinese advanced cancer patients and their informal caregivers

Background: Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers.

Mon, 06/13/2022 - 14:09

Qigong mind-body program for caregivers of cancer patients: design of a pilot three-arm randomized clinical trial

Background: Informal caregivers, often family and friends, experience significant psychological and physical distress leading to reductions in health and quality of life (QOL). Mind-body interventions focused on caregivers are often limited and do not address multiple barriers, including caregivers’ economic, geographic, and time constraints. Translation of in-person, community-based interventions to Internet-based delivery may offer greater accessibility for caregivers, leading to increased adherence.

Mon, 06/13/2022 - 13:39

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