Loneliness and disability: A systematic review of loneliness conceptualization and intervention strategies.

Introduction: People with disabilities experience loneliness to a greater extent than people without disabilities. To better understand this problem, we have conducted a systematic review of studies that involved disability and loneliness. The aims are to research what loneliness is and to conceptualize and define it in the context of disability, and the intervention strategies that have been developed.

The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear.

In this paper, we propose a vision of the role of parent/caregiver with children affected by a rare disease. This vision is rooted in data obtained from our own research; however, our analysis and interpretation of this data have been subsequently checked against existing theoretical models. The research aims to explore how parents who look after children with a rare disease experience their role as caregivers and how they assimilate their role identity in this task.

[The use of Facebook in Spanish associations of rare diseases: how and what is it used for?].

Objective: To study whether the use of Facebook is widespread in the field of patient associations for rare diseases and, if so, the purpose for which the site is being used.

Method: A descriptive study was conducted to determine whether associations within the Spanish Federation for Rare Diseases use Facebook and, if so, the type of use and its objectives. The analysis was performed based on a categorization system that has been used in the field of chronic diseases and has been adapted to the specific characteristics of rare diseases.

The Online Big Blue Test for Promoting Exercise: Health, Self-Efficacy, and Social Support.

Background: Recent articles have documented the influence of self-efficacy and social support on exercising. Simultaneously, insulin use is also related to the perception of self-efficacy and social support in patients with diabetes. We combine these two ideas through the Big Blue Test experience in a social networking site and propose to analyze whether a change in blood sugar levels after completion of the Big Blue Test and insulin use are related to the perception of self-efficacy and social support in patients with diabetes.

Quality of life and mental health among parents of children with cerebral palsy: the influence of self-efficacy and coping strategies.

Aims And Objectives: To explore the quality of life and mental health of caregivers of children with cerebral palsy and to examine the impact of self-efficacy and coping strategies on these outcomes.

Background: Few studies analyse the impact of caring for a child with cerebral palsy on the caregivers' quality of life besides mental health. Also, less attention has been paid to the influence of caregiver's personal resources like self-efficacy or coping strategies on how they adjust to the child's illness and the care situation.

Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases.

Web-based interventions are effective on the patient empowerment. Guiametabolica.org constitutes an interface for people involved in inherited metabolic diseases, trying to facilitate access to information and contact with professionals and other patients, offering a platform to develop support groups.

ePatients on YouTube: analysis of four experiences from the patients' perspective.

Background: Many patients share their personal experiences and opinions using online video platforms. These videos are watched by millions of health consumers and health care professionals. Although it has become a popular phenomenon, little is known about patients who share videos online and why they do so.

Working women's lifestyles and quality of life in the information society.

We investigate the lifestyles of Spanish women workers engaged in the information and communication society and analyze key indicators of lifestyle as predictors of their quality of life. In this study, 207 women aged between 19 and 54 years responded to questions related to daily activities and to a quality-of-life questionnaire. We concluded that Spanish women in this study show regular and healthy habits in diet and prevention behaviors, and we also identify important quality-of-life predicting factors in issues related to personal time management.