Chronic diseases

Objective: to identify the main difficulties of families/caregivers of coping with children's chronic condition.

Method: descriptive and exploratory study with qualitative approach, conducted with 22 caregivers of children affected by chronic diseases living in municipalities of the rural arid zone of Pernambuco State. Data were produced through semi-structured individual interviews and analyzed with the content analysis technique.

Quality of life (QOL) is a key aspect of the health care process for children with chronic diseases and their families. Although clinical evidence regarding the impact of chronic disease on children exists, few studies have evaluated the effects of the interaction between sociodemographic and psychosocial factors on the family caregiver's QOL, indicating a significant gap in the research literature. The present study aimed to identify the predictors of the QOL of parents of children with chronic diseases.

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.

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.

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.

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.

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 jesuisautonome.fr 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.

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 (www.projectaida.eu/). This was funded by EU Progress Program with the purpose of highlighting common aspects of effectiveness.

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.

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.