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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

Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study

Background: Informal caregiving for people with dementia can negatively impact caregivers’ health. In Asia-Pacific regions, growing dementia incidence has made caregiver burnout a pressing public health issue. A cross-sectional study with a representative sample helps to understand how caregivers experience burnout throughout this region. We explored the prevalence and contributing factors of burnout of caregivers of community-dwelling older people with dementia in Hong Kong (HK), China, and New Zealand (NZ) in this study.

Tue, 01/25/2022 - 14:42

Care in times of COVID-19: the impact of the pandemic on informal caregiving in Austria

Background: Much attention has been paid to the effects of the COVID-19 pandemic on long-term care but the impact on informal caregivers has remained speculative. In Austria, like in other European countries, informal care is carried out overwhelmingly by (non-cohabiting) relatives. Limited care services available during the pandemic, social-distancing, increased unemployment and competing care needs within households (e.g. due to school closures) may have changed the prevalence and intensity of informal caregiving.

Tue, 01/18/2022 - 16:38

Acceptance and commitment therapy for fatigue interference in advanced gastrointestinal cancer and caregiver burden: protocol of a pilot randomized controlled trial

Background: Fatigue interference with activities, mood, and cognition is one of the most prevalent and bothersome concerns of advanced gastrointestinal (GI) cancer patients. As fatigue interferes with patient functioning, family caregivers often report feeling burdened by increasing responsibilities. Evidence-based interventions jointly addressing cancer patient fatigue interference and caregiver burden are lacking. In pilot studies, acceptance and commitment therapy (ACT) has shown promise for addressing symptom-related suffering in cancer patients.

Mon, 01/17/2022 - 20:03

Calculation and Analysis of Family Care Burden Coefficient

The family care burden can be identified by measuring the family support burden coefficient, the support burden coefficient and the family special disability, the patient population care coefficient three quantifiable numerical indicators to identify the most urgent housing needs.

Mon, 01/17/2022 - 11:24

Building family caregiver skills using a simulation-based intervention for care of patients with cancer: protocol for a randomized controlled trial

Background: Family caregivers of patients with cancer undergoing radiation therapy experience significant distress and challenges related to high symptom burden and complex care demands. This is particularly true for caregivers of patients with head and neck, esophageal, anal, rectal, and lung cancers, who are often receiving combined-modality treatment and may have tracheostomy tubes, gastrostomy tubes, or colostomies/ileostomies.

Fri, 01/14/2022 - 19:00

Behavioural and psychological symptoms of dementia in patients with Alzheimer’s disease and family caregiver burden: a path analysis

Background: Studies reported the relationship between behavioural and psychological symptoms of dementia (BPSD), cognitive function, caregiver burden, and therapeutic effects. However, the causal relationship between BPSD in community-dwelling patients with Alzheimer’s disease (AD) and caregiver burden is yet to be established. This study aimed to classify BPSD in patients with AD and identify the relationship between BPSD and the factors affecting family caregiver burden.

Fri, 01/14/2022 - 13:57

Barriers and facilitators for shared decision making in older patients with multiple chronic conditions: a systematic review

Background: The aim of this study was to describe barriers and facilitators for shared decision making (SDM) as experienced by older patients with multiple chronic conditions (MCCs), informal caregivers and health professionals. Methods: A structured literature search was conducted with 5 databases. Two reviewers independently assessed studies for eligibility and performed a quality assessment. The results from the included studies were summarized using a predefined taxonomy. Results: Our search yielded 3838 articles.

Fri, 01/14/2022 - 12:33

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