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Congruence of cancer pain experience between patients and family caregivers and associated factors: a multicenter cross-sectional study in China

Purpose: The purposes of this study were to determine whether there were differences in the cancer pain experience between patients and family caregivers (FCGs) and to explore the associated factors that influence cancer pain experience congruence. Methods: A multicenter cross-sectional study was conducted. A total of 410 patient-family caregiver dyads completed face-to-face surveys, including information about basic characteristics, the Patient Pain Questionnaire (PPQ), and the Family Pain Questionnaire (FPQ).

Tue, 02/01/2022 - 13:05

Comparison of the anxiety, depression and their relationship to quality of life among adult acute leukemia patients and their family caregivers: a cross-sectional study in China

Purpose: To compare the anxiety, depression and explore their relationship to quality of life (QoL) among adult acute leukemia (AL) patients and family caregivers (FCs) in China. Methods: A multicenter cross-sectional study was conducted from April 2017 to January 2018. The sample comprised 207 dyads of adult AL patients and FCs. The participants were required to complete socio-demographic information and the Hospital Anxiety and Depression Scale (HADS).

Mon, 01/31/2022 - 20:20

A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data

Background: Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care.

Mon, 01/31/2022 - 19:44

Communication of Pharmacogenomic test results and treatment plans in pediatric oncology: deliberative stakeholder consultations with parents

Background: Effective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e.

Mon, 01/31/2022 - 18:50

Combining paid work and family care for a patient at the end of life at home: insights from a qualitative study among caregivers in the Netherlands

Background: Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs.

Mon, 01/31/2022 - 17:05

Combining a variable‐centered and a person-centered analytical approach to caregiving burden – a holistic approach

Background: Informal caregivers of persons with dementia often experience elevated levels of caregiving burden. However, existing studies tend to use a variable-centered approach to explore it. This study aims to understand the caregiving burden of informal caregivers of persons with dementia in Singapore through a combination of variable-centered and person-centered analytical approaches, and explore the correlates of identified factors and latent classes of caregiving burden.

Mon, 01/31/2022 - 16:30

A cluster randomized controlled trial comparing Virtual Learning Collaborative and Technical Assistance strategies to implement an early palliative care program for patients with advanced cancer and their caregivers: a study protocol

Background: Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies.

Fri, 01/28/2022 - 17:38

Characterizing Dementia Caregivers’ Information Exchange on Social Media: Exploring an Expert-Machine Co-development Process

Background: Social media platforms have introduced new opportunities for supporting family caregivers of persons with Alzheimer’s disease and related dementias (ADRD). Existing methods for exploring online information seeking and sharing (i.e., information exchange) involve examining online posts via manual analysis by human experts or fully automated data-driven exploration through text classification. Both methods have limitations.

Thu, 01/27/2022 - 20:02

The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

Study design: Qualitative exploratory study. Objectives: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. Setting: Caregivers of people with SCI living in the community in Switzerland. Methods: Data were collected through semi-structured interviews. Thematic analysis was performed. Results: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years.

Thu, 01/27/2022 - 16:51

“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

Background: Stepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods: In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one.

Tue, 01/25/2022 - 15:34

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