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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. Methods: The research protocol is based on the PRISMA guidelines. Two hundred and eighty-one papers were screened and 75 reports were assessed for eligibility. Results: We have not found whether loneliness in disability is a single construct or a collection of various subtypes. We have found that there are protective factors against loneliness in disabled people, such as having a job or living in an environment without physical barriers. Discussion: In terms of the interventions for people with disabilities, the same strategies have been adopted as for the non-disabled: social skills training, enhanced social support, opportunities for interactions, and cognitive training.
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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. Semi-structured interviews were performed with parents of 10 children, and a qualitative data analysis was conducted using grounded theory. We have identified ten main categories using a grounded theory approach: stress, disorientation, insecurity, isolation, faith, trust, attention, communication with professionals, private proactivity and public proactivity. Our results also show that when parents perceive a greater burden due to looking after a child with a rare disease, the result is a change in the usual parental role. In our contribution, we offer a general outline of how parents build a role identity centred on caring for a child with a rare disease. We posit that this role identity is the outcome of the parents' success or failure in gradually overcoming fear through love. We have conceptualized this process as navigating between love and fear.
Subject(s)
Caregivers , Rare Diseases , Child , Fear , Humans , Love , Parent-Child Relations , Qualitative ResearchABSTRACT
Objetivo: Estudiar si el uso de Facebook está extendido en el ámbito de las asociaciones de pacientes con enfermedades raras y, en caso afirmativo, con qué fin se está utilizando. Método: Estudio descriptivo transversal para conocer la existencia, el tipo y los objetivos del uso de Facebook por parte de asociaciones españolas federadas en la Federación Española de Enfermedades Raras. El análisis de los objetivos se realiza sobre la base de un sistema de categorización que ha sido utilizado en el ámbito de enfermedades crónicas y adaptado a las particularidades de las enfermedades raras. Resultados: Las asociaciones están utilizando Facebook para sensibilizar sobre las enfermedades raras en general y sobre la propia en particular, así como para intercambiar contenidos relacionados con el apoyo psicológico, médico y social, la promoción y la difusión de la investigación, y la recaudación de fondos. Conclusiones: La alineación entre los intereses de las asociaciones a través de su presencia en Facebook y los ámbitos de actuación de la estrategia nacional de enfermedades raras permite ser optimistas sobre la viabilidad de utilizar Facebook como espacio de encuentro y trabajo colaborativo (AU)
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. Results: Associations use Facebook to raise awareness of rare diseases in general and particularly to share content related to psychological, medical and social support, the promotion and dissemination of research, and fundraising. Conclusions: The alignment between the interests of associations through their presence on Facebook and policy areas of the national strategy for rare diseases is a reason for optimism about the feasibility of using Facebook as a tool for encounters and collaborative work (AU)
Subject(s)
Humans , Social Networking , Rare Diseases , Goals , Intention , Internet , Public Opinion , Social PerceptionABSTRACT
La eSalud está reconocida a nivel nacional, europeo e internacional como una prioridad estratégica para el sistema sanitario. La Psicología, como profesión sanitaria, tiene la oportunidad y la obligación de profundizar su actividad en un ámbito donde hasta ahora no había tenido una gran presencia. Los principios básicos de la Web 2.0 integrados a la práctica profesional de la Psicología exigen, más allá del uso de la tecnología, una nueva actitud y compromiso hacia la colaboración, adoptar una perspectiva transversal de la tecnología en todos los ámbitos de la actividad de los psicólogos, y la consideración de la capacidad de automanejo de las personas respecto a su salud. Es la Psicología 2.0, que plantea interesantes oportunidades laborales y retos a los que la disciplina y los colegios profesionales deberán dar respuesta para asegurar la calidad del servicio de las personas
eHealth is recognised as a strategic priority for the healthcare system at the national, European and international levels. Psychology, as a health profession, has the opportunity and the obligation to deepen its activity, in an area that has not had a notable presence until now. The basic principles of the Web 2.0 integrated into professional practice require, more than simply the use of technology, a new attitude and commitment towards collaboration, the adoption of a transversal perspective of technology in all areas of activity of psychologists and the consideration of peoples self-management abilities regarding their own health. Psychology 2.0 proposes interesting job opportunities and challenges, to which the discipline and the professional associations must respond, in order to guarantee service quality to the people
Subject(s)
Female , Humans , Male , Psychology/education , Psychology/ethics , Psychology/methods , Information Technology/analysis , Information Technology/methods , Information Technology/statistics & numerical data , Internet/standards , Internet , Webcasts as Topic/instrumentation , Psychology , Psychology/organization & administration , Psychology/standards , Feedback, Psychological/ethicsABSTRACT
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. RESULTS: Associations use Facebook to raise awareness of rare diseases in general and particularly to share content related to psychological, medical and social support, the promotion and dissemination of research, and fundraising. CONCLUSIONS: The alignment between the interests of associations through their presence on Facebook and policy areas of the national strategy for rare diseases is a reason for optimism about the feasibility of using Facebook as a tool for encounters and collaborative work.
Subject(s)
Information Seeking Behavior , Rare Diseases , Self-Help Groups , Social Media/statistics & numerical data , Social Support , Cooperative Behavior , Cross-Sectional Studies , Fund Raising , Health Behavior , Humans , Information Dissemination , Research , SpainABSTRACT
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. MATERIALS AND METHODS: To undergo the Big Blue Test, 3,926 participants voluntarily joined the Diabetes Hands Foundation. Responses were analyzed using descriptive analysis. RESULTS: The participants who reduced their blood glucose after exercise the least were those with lower self-efficacy and also with lower perceived social support. There seems to have been no relationship between changes in blood sugar level and the explicit intention of doing exercise in the future. Insulin-dependent participants demonstrated a lower perception of self-efficacy and social support than non-insulin-dependent participants. CONCLUSIONS: Change in blood glucose level or being insulin-dependent or not do not explain completely a health behavior such as exercise. Hence, self-efficacy and social support have an impact on behavioral change such as exercise to become a habit in people with diabetes, and this experience through a social networking site is an important tool for this behavioral change. For exercise to become a habit in people with diabetes, it is necessary to consider not only the crucial physiological variables, but also those psychological variables that clearly have an impact on behavioral change.
Subject(s)
Diabetes Mellitus, Type 2 , Exercise Therapy , Internet , Self Efficacy , Social Support , Surveys and Questionnaires , Blood Glucose/metabolism , Diabetes Mellitus, Type 2/blood , Diabetes Mellitus, Type 2/psychology , Diabetes Mellitus, Type 2/therapy , Female , Humans , MaleABSTRACT
The objective is to present a website designed to improve the quality of life of caregivers of children with cerebral palsy and show data concerning its usefulness. The website was developed in accordance with scientific literature about caregivers' burden. We organized the website around different sections (e.g. family communication, learning to relax) and social support forums. The interactive features of the site were designed to accommodate different caregivers' needs and enable them to choose different pathways according to their own individual needs. Participants were 10 caregivers who took part in a pilot study and completed a questionnaire to analyze the usefulness of the website after five months using it. Preliminary results suggested that the website was useful for participants. The most useful sections were the "peer-to-peer" and the professional forums. This study shows the potential of an online intervention for parents of children with cerebral palsy.
El objetivo del artículo es presentar un sitio web diseñado para mejorar la calidad de vida de cuidadores de niños con parálisis cerebral y mostrar los datos correspondientes a su utilidad. Este sitio fue desarrollado acorde con la literatura científica sobre el tema de carga de los cuidadores y se organizó en torno a diferentes secciones (comunicación familiar, aprender a relajarse, entre otros) y foros de apoyo social. Las características interactivas del sitio fueron diseñadas para satisfacer las necesidades de los cuidadores, eligiendo diferentes caminos en función de las propias. En el estudio piloto participó una muestra de 10 cuidadores que completaron un cuestionario para analizar la utilidad del sitio web después de cinco meses de usarlo. Los resultados preliminares sugieren que este fue útil para los participantes y que las secciones de mayor utilidad fueron la denominada "de par a par" y los foros profesionales. El presente trabajo muestra el potencial de una intervención en línea, para padres de niños con parálisis cerebral.
Subject(s)
Quality of Life , Social WelfareABSTRACT
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. DESIGN: Cross-section correlational design. METHODS: Sixty two parents of children with cerebral palsy completed measures to assess the quality of life (i.e. physical, environmental and social relationships), mental health (i.e. general mental health, depression and anxiety), self-efficacy and coping strategies. RESULTS: Parents of children with cerebral palsy had, in general terms, low levels of quality of life and mental health. Self-efficacy was related to most of the outcomes, whereas any of the coping strategies assessed was significantly related to the outcomes. CONCLUSIONS: Quality of life and mental health can be affected in caregivers of children with CP. Personal resources like self-efficacy also need attention as they can help in the understanding of the differences in these outcomes and the design of effective interventions. RELEVANCE OF CLINICAL PRACTICE: Self-efficacy should be a key element in interventions addressed to parents of children with CP to elicit a process of empowerment that can improve the well-being of the family as a whole.
Subject(s)
Adaptation, Psychological , Cerebral Palsy/psychology , Mental Health , Parents/psychology , Quality of Life , Self Efficacy , Adult , Caregivers , Child , HumansABSTRACT
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. Guiametabolica.org is widely considered for Spanish-speaking patients and caregivers with inherited metabolic diseases. Preliminary evaluations show changes in their habits, decrease in their senses of isolation and improvement regarding self-efficacy. Specific inherited metabolic diseases websites, especially participative websites, should be considered as a complement to more traditional clinical approaches. Their contribution lies in patient's general well-being, without interfering with traditional care.
Subject(s)
Genetic Diseases, Inborn/genetics , Internet , Metabolic Diseases/genetics , Patient Education as Topic , Power, Psychological , Genetic Diseases, Inborn/psychology , Humans , Metabolic Diseases/psychologyABSTRACT
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. OBJECTIVE: We aimed to explore the motivations and challenges faced by patients who share videos about their health and experiences on YouTube. As part of a conference discussion, we asked several patients actively engaged on YouTube to make a video explaining their motivations. This paper discusses these videos. METHODS: In this qualitative study, we performed an analysis of the videos created by 4 patients about their self-reported motivations and challenges they face as YouTube users. First, two judges compared the transcriptions and decided the exact wording when confusing content was found. Second, two judges categorized the content of the videos to identify the major themes. RESULTS: four main categories emerged: (1) the origin or cause for making the first video, (2) the objectives that they achieve by continuing to make videos, (3) the perception of community, and (4) the negative consequences of the experience. CONCLUSIONS: The main reason for making videos was to bridge the gap between traditional health information about their diseases and everyday life. The first consequence of sharing their life on YouTube was a loss of privacy. However, they also experienced the positive effects of expressing their feelings, being part of a large community of peers, and helping others to deal with a chronic condition.
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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.
