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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

Psychosocial interventions to support the mental health of informal caregivers of persons living with dementia – a systematic literature review

Background: Informal caregivers of persons living with dementia have an increased risk of adverse mental health effects. It is therefore important to systematically summarize published literature in order to find out which mental health interventions generate effective support for informal caregivers of persons living with dementia.

Mon, 06/13/2022 - 13:26

Psychosocial impact of Covid-19 outbreak on Italian asthmatic children and their mothers in a post lockdown scenario

Background: Italy was the first European country to fight the Covid-19 outbreak. To limit the transmission of the virus, the Italian Government imposed strict domestic quarantine policies and temporary closure of non-essential businesses and schools from March 10th,2020. Although more and more literature is exploring the impact of the pandemic on non-referred children and families, only a few studies are focused on the psychosocial impact of Covid-19 in chronically ill children and their caregivers.

Mon, 06/13/2022 - 13:20

Psychosocial and economic impact of rheumatic diseases on caregivers of Mexican children

Background: Pediatric rheumatic disease (PRD) patients and their caregivers face a number of challenges, including the consequences of the PRD in patients and the impact on multiple dimensions of the caregivers’ daily lives. The objective of this study is to measure the economic, psychological and social impact that PRD has on the caregivers of Mexican children. Methods: This is a multicenter, cross-sectional study including primary caregivers of children and adolescents with PRD (JIA, JDM and JSLE) during April and November, 2019.

Mon, 06/13/2022 - 13:07

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