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Chronic diseases

Measuring caregiver activation to identify coaching and support needs: Extending MYLOH to advanced chronic illness

Introduction: Family and friends of seriously ill patients are key partners in providing support and health care at home, managing relationships with clinicians, and navigating complex health care systems. Becoming a knowledgeable, confident, and effective caregiver is a developmental process we term 'caregiver activation' and could be facilitated by clinicians equipped with suitable tools. Managing Your Loved One’s Health (MYLOH) is a new tool to identify gaps in caregivers' knowledge, skills, and access to clinical and personal support.

Fri, 05/24/2019 - 10:08

Informal care and health behaviors among elderly people with chronic diseases

Background: The mechanism by which social relationships influence health can be interpreted as a social network regulating one's health behaviors. Based on the hypothesis that relatives, friends, or neighbors are sources of social support and may monitor one's health behaviors, researchers have gotten significant and consistent results that a social network can regulate health behaviors.

Fri, 04/12/2019 - 16:16

Patient and caregiver goals for dementia care

Purpose: Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers. Methods: We conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking.

Mon, 10/22/2018 - 13:31

Caring for the Caregiver: Identifying the Needs of Those Called to Care Through Partnerships with Congregations

As the older adult population continues to grow, the prevalence of chronic diseases is also increasing, leading to the need for novel ways of managing this large population of patients. One solution is to focus on informal caregivers. These informal caregivers already make a substantial contribution to our nation's healthcare finances and patient health outcomes.

Wed, 10/03/2018 - 13:14

Self-assessment of independence in older people: First results from an open-access website for senior citizens and caregivers in France

Background: E-health initiatives on the Internet can be used to provide support to people with chronic diseases and to their caregivers. In 2014/2015, we created a free website called where older people, or their carers on their behalf, can assess their independence in daily living by filling out a simple questionnaire. Objectives: To evaluate the interest of the public in websites of this kind, by analysing home care plans obtained via the self-assessment questionnaire. We also describe patterns of use and visitor behaviour.

Thu, 07/05/2018 - 07:46

Good practice in European integration: Lessons from the AIDA Project

Introduction: Interest in the integration of health and social care services has grown in recent years amongst all Governments in Europe in light of the increasing numbers of older people and those affected by chronic illnesses. This poster offers a review of the “Album of 10 Good Practices of integration at European level” carried out within the Advancing Integration for a Dignified Ageing (AIDA)- Project ( This was funded by EU Progress Program with the purpose of highlighting common aspects of effectiveness.

Thu, 07/20/2017 - 15:21

Confirmatory Factor Analysis and Invariance Testing of the Young Carer of Parents Inventory (YCOPI)

Objective: Research into youth caregiving in families where a parent experiences a significant medical condition has been hampered by a lack of contextually sensitive measures of the nature and breadth of young caregiving experiences. This study examined the factor structure and measurement invariance of such a measure called the Young Carer of Parents Inventory (YCOPI; Pakenham et al., 2006) using confirmatory factor analysis across 3 groups of youth.

Thu, 07/20/2017 - 15:21

The nature of youth care tasks in families experiencing chronic illness/disability: Development of the Youth Activities of Caregiving Scale (YACS)

The purpose of this study was to develop an empirically derived multi-item scale of care tasks performed by young people in the context of family illness/disability: the Youth Activities of Caregiving Scale (YACS). A total of 135 youngsters aged 10–24 years with an ill/disabled family member completed questionnaires. Factor analyses performed on the YACS yielded four factors, instrumental care, social/emotional care, personal/intimate care and domestic/household care, accounting for 57.78% of the variance. The internal reliabilities of all factors ranged from 0.74 to 0.92.

Thu, 07/20/2017 - 15:16

Exploring Social Care: Applying a New Construct to Young Carers and Grandparent Carers

Mainstream literature on paid care for children, frail elderly people and people with chronic illness or disability, and unpaid care provided usually by family members within households and kin networks tends to establish dichotomies: formal/informal, commodified/non-commodified. Recent feminist literature rejects these dichotomies, developing models of social care in which the interconnections of paid and unpaid care are mapped within policy frameworks.

Thu, 07/20/2017 - 15:15

The physical functioning and mental health of informal carers: evidence of care-giving impacts from an Australian population-based cohort

Informal carers represent a substantial proportion of the population in many countries and health is an important factor in their capacity to continue care-giving. This study investigated the impact of care-giving on the mental and physical health of informal carers, taking account of contextual factors, including family and work. We examined health changes from before care-giving commenced to 2 and 4 years after, using longitudinal data from the Household Income and Labour Dynamics in Australia survey. The sample comprised 424 carers and 424 propensity score-matched non-carers.

Thu, 07/20/2017 - 15:14