A European study investigating patterns of transition from home care towards institutional dementia care: the protocol of a RightTimePlaceCare study

<p>Abstract</p> <p>Background</p> <p>Health care policies in many countries aim to enable people with dementia to live in their own homes as long as possible. However, at some point during the disease the needs of a significant number of people with dementia cannot be appropriately met at home and institutional care is required. Evidence as to best practice strategies enabling people with dementia to live at home as long as possible and also identifying the right time to trigger admission to a long-term nursing care facility is therefore urgently required. The current paper presents the rationale and methods of a study generating primary data for best-practice development in the transition from home towards institutional nursing care for people with dementia and their informal caregivers. The study has two main objectives: 1) investigate country-specific factors influencing institutionalization and 2) investigate the circumstances of people with dementia and their informal caregivers in eight European countries. Additionally, data for economic evaluation purposes are being collected.</p> <p>Methods/design</p> <p>This paper describes a prospective study, conducted in eight European countries (Estonia, Finland, France, Germany, Netherlands, Sweden, Spain, United Kingdom). A baseline assessment and follow-up measurement after 3 months will be performed. Two groups of people with dementia and their informal caregivers will be included: 1) newly admitted to institutional long-term nursing care facilities; and 2) receiving professional long-term home care, and being at risk for institutionalization. Data will be collected on outcomes for people with dementia (e.g. quality of life, quality of care), informal caregivers (e.g. caregiver burden, quality of life) and costs (e.g. resource utilization). Statistical analyses consist of descriptive and multivariate regression techniques and cross-country comparisons.</p> <p>Discussion</p> <p>The current study, which is part of a large European project 'RightTimePlaceCare', generates primary data on outcomes and costs of long-term nursing care for people with dementia and their informal caregivers, specifically focusing on the transition from home towards institutional care. Together with data collected in three other work packages, knowledge gathered in this study will be used to inform and empower patients, professionals, policy and related decision makers to manage and improve health and social dementia care services.</p

Chronic Childhood Stress: Psychometric Properties of the Chronic Stress Questionnaire for Children and Adolescents (CSQ-CA) in Three Independent Samples

Stress in children and adolescents is common and related to many developmental problems. However, most studies have made no distinction between temporary or chronic stress due to the lack of a suitable questionnaire. This study tested the factor structure, reliability and validity of the 17-item self-report Chronic Stress Questionnaire for Children and Adolescents (CSQ-CA) in three samples, that is, 717 adolescents from the general population, 161 adolescents of parents with a severe chronic medical condition (CMC) like multiple sclerosis, and 113 adolescents with healthy parents. Results showed that a one-factor solution provided a reasonable fit overall. Reliability was good (α = .80 to .88). Convergent validity was supported by positive relations between total stress scores and internalizing and externalizing problem behaviors, experience of daily hassles, and maladaptive emotion regulation strategies and negative relations with quality of life, happiness, mindfulness, self-esteem, and coping skills. Adolescents from all samples, who themselves had a light CMC like asthma, showed higher chronic stress levels than those without a CMC. In line, adolescents of parents with a severe CMC reported more chronic stress than those of healthy parents, and adolescents with a chronic illness themselves and a parent with a chronic illness, showed the highest scores across the two family types. Overall, this study presents good psychometric properties of the first available measure of chronic stress in children and adolescents