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Journal article

Cancer as Communal: Understanding Communication and Relationships from the Perspectives of Survivors, Family Caregivers, and Health Care Providers

With cancer increasing in prevalence and high priorities placed on concurrent oncological and palliative care to help meet the familial, spiritual, and individual needs of stakeholders in cancer, research is needed that assesses the factors that facilitate coping across stakeholders in cancer care. We were interested in synthesizing our understanding of communication and relationships among patients, caregivers, and providers based on the reasoning that illness is relational, but often conceptualized and researched from the individual perspectives of various stakeholders.

Mon, 01/13/2020 - 15:32

Burden of Illness in Not Adequately Controlled Chronic Hypoparathyroidism: Findings From a 13-Country Patient and Caregiver Survey

Objective: To address knowledge gaps regarding burdens associated with not adequately controlled chronic hypoparathyroidism.; Design: Global patient and caregiver survey.; Study Populations: Patients with chronic hypoparathyroidism not adequately controlled on conventional therapy and their caregivers.; Measurements: Health-related quality of life (HRQoL) and health status were evaluated using the 36-item Short Form version 2 (SF-36 v2.0) and Five-Level EuroQoL 5 Dimensions (EQ-5D-5L) instruments, respectively.

Sun, 01/12/2020 - 22:17

Burden of Care and Quality of Life in Home Caregivers of Patients With Stroke in Iran

The purpose of this study was to investigate the relationship between Burden of Care and Quality of Life in informal home caregivers of stroke patients in Iran. Also we were trying to explore the factors that affect the burden of care. In this cross-sectional study, we have selected 62 informal home caregivers of the patients admitted to "the stroke outpatient unit of the neurology clinic" of the central hospital in Semnan province, Iran, to take part in the investigation. We interviewed them using the Caregiver Burden Inventory and SF-36 Questionnaire for assessing their quality of life.

Sun, 01/12/2020 - 22:11

Burden in caregivers of adults with epilepsy in Asian families

Purpose: The literature on caregiver burden tends to focus on children and teenagers with epilepsy and less on adults.

Sun, 01/12/2020 - 22:07

Building on Self-efficacy for Experienced Family Caregivers: The Savvy Advanced Program

Background and Objectives The Savvy Advanced psychoeducation program was designed for previously trained caregivers of persons living with dementia to refine their problem-solving and planning skills and enhance their sense of self-efficacy as dementia progressed for the care recipient. Implementation, feasibility, participant satisfaction, and perceived program benefits were also evaluated. Research Design and Methods A total of 100 dementia family caregivers participated in the 12-month evaluation of Savvy Advanced.

Sun, 01/12/2020 - 22:00

Bereaved Family Cancer Caregivers' Unmet Needs: Measure Development and Validation

Purpose/background: Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied.

Sun, 01/12/2020 - 21:53

Balancing personal wishes and caring capacity in future planning for adults with an intellectual disability living with family carers

Most people with intellectual disabilities (IDs) live at home with family, and most carers and care recipients wish to continue this arrangement. However, despite worry about what will happen when carers are unable to continue caring, most families do not plan for the future. The Future Care Road Map (FCRM) pilot study sought to enhance future care planning for families of adults with ID. Twelve families were facilitated through the FCRM process to establish future care plans, including future living and care arrangements.

Sun, 01/12/2020 - 17:52

Associations of preloss and postloss factors with severe depressive symptoms and quality of life over the first 2 years of bereavement for family caregivers of terminally ill cancer patients

Background: Family caregivers carry heavy end-of-life (EOL) caregiving burdens, with their physical and psychological well-being threatened from caregiving to bereavement. However, caregiving burden has rarely been examined as a risk factor for bereavement adjustment to disentangle the wear-and-tear vs relief models of bereavement.

Sun, 01/12/2020 - 17:48

The association between specific neuropsychiatric disturbances in people with Alzheimer's disease and dementia with Lewy bodies and carer distress

Objective: Neuropsychiatric symptoms (NPSs) are identified as important care-recipient variables in terms of the impact on carer distress. The aim of this study was to determine whether specific neuropsychiatric disturbances in people with Alzheimer disease (AD) and dementia with Lewy bodies (DLB) differentially impact carer distress. Methods: This was a cross-sectional study of people diagnosed with AD and DLB and their primary carers.

Sun, 01/12/2020 - 17:39

Antonovsky's sense of coherence and resistance resources reduce perception of burden in family carers of people with Alzheimer's disease

Objectives: Taking care of people with dementia (PWD) has been associated with some degree of burden. The variability of the carer's burden can be partially explained by their personal characteristics. Antonovsky's model of health defined the resistance resources (RRs) as essential mechanisms to cope with stressors, and to shape the personal sense of coherence (SOC). This study identifies the RRs related with carer's SOC, and their implications in the perception of burden in family dementia carers.

Sun, 01/12/2020 - 17:33