Analysis of patient organizations' needs and ICT use--The APTIC project in Spain to develop an online collaborative social network.

BACKGROUND: The purpose of this first part of the APTIC (Patient Organisations and ICT) project is to design and run an online collaborative social network for paediatric patient organizations (PPOs). OBJECTIVE: To analyse the needs of PPOs in Spain to identify opportunities to improve health services through the use of ICT. SETTING AND PARTICIPANTS: A convenience sample of staff from 35 PPOs (54.68% response rate) participated in a structured online survey and three focus groups (12 PPOs). RESULTS: Paediatric patient organizations' major needs are to provide accredited and managed information, increase personal support and assistance and promote joint commitment to health care. Moreover, PPOs believe in the Internet's potential to meet their needs and support their activities. Basic limitations to using the Internet are lack of knowledge and resources. CONCLUSION: The discussion of the data includes key elements of designing an online collaborative social network and reflections on health services provided.

Internet use and suicidal behaviors: internet as a threat or opportunity?

BACKGROUND: Suicidal behavior is a common and severe health problem around the world. Internet use has been related to an increase in suicidal behaviors, but few studies have focused on the potential benefits of Internet use for preventing self-harm and suicide. MATERIALS AND METHODS: We reviewed the existing literature on the relationship between suicide and Internet use. RESULTS: The accessibility of suicide-related information on the Internet seems to have an impact on the incidence of suicide behaviors. However, the Internet is useful for linking people who feel lonely or isolated, and it provides access to suicide prevention information and resources. The Internet can influence vulnerable people to attempt suicide, but it can also be used to prevent self-harm and suicide. CONCLUSIONS: We propose some efforts that can be made in this preventive line.

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. 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.

Quality of life of caregivers of children with visual impairment: A qualitative approach.

BACKGROUND: Receiving a diagnosis of a child with untreatable visual impairment (VI) may have a negative impact on parents and caregivers, and affect their quality of life (QoL). AIMS: To use a qualitative research approach to determine the impact that caregiving a child with a VI has on the QoL of caregivers in Catalonia (Spain). METHODS: An observational study was designed in which nine parents of children with VI (6 mothers) were recruited following an intentional sampling scheme. In-depth interviews were conducted, and a thematic analysis was performed to identify main themes and subthemes. The QoL domains defined in the questionnaire WHOQoL-BREF guided data interpretation. RESULTS: An overarching theme was defined (the weight on one's shoulders), as well as two main themes (obstacles race and emotional impact) and seven subthemes. QoL was negatively affected by a general lack of knowledge and understanding regarding VI in children and its implications for children and caregivers, whereas social support, gaining knowledge, or cognitive reappraisal had a positive effect. CONCLUSIONS: Caregiving for children with VI affects all QoL domains, resulting in persistent psychological distress. Both administrations and health care providers are encouraged to develop strategies to assist caregivers in their demanding roles.

Avatars using computer/smartphone mediated communication and social networking in prevention of sexually transmitted diseases among North-Norwegian youngsters.

BACKGROUND: Sexually transmitted diseases (STDs), especially the Chlamydia trachomatis bacterial infection, a common cause of infertility, are highly prevalent in developed countries, and a worrying problem in North Norway, where the incidence of chlamydia twice the Norwegian average. Seventy percent of reported chlamydia cases are found in people below 25 years of age, and although its spread could be controlled with proper prevention, young people are more aware of the risks of unwanted pregnancy than their risk of acquiring a STD. Information and Communication Technologies, including, the Internet, social media and/or smartphones, should be valued for sexual health promotion for their potential to engage young audiences. And in these media, avatars guarantee anonymity to users when handling sensitive information. The main objective of this project is to achieve that North Norwegian youngsters become more aware of STDs through the use of popular technologies among young people. METHODS: A Virtual Clinic for Sexually Transmitted Diseases (VCSTD) will be developed. The VCSTD will provide early guidance and reliable information sources concerning reproductive health, delivered in a novel and innovative way to the younger population. The VCSTD consists of an "avatar" supported intervention in a serious gaming and e-learning environment, which will bypass direct physical access (in person) to reliable medical information, as well as allowing the youngsters to share that information in social media, and thus helping the VCSTD to be disseminated to more people.Data analyses will be conducted on publically available health data relevant to STDs in Troms and Finnmark, like the absolute number of chlamydia tests, the amount of emergency contraception medication sold, and the number of abortions. Also, usage data of the system and experiences of usefulness will be explored through participants' voluntary responses to a feedback form available in the VCSTD. DISCUSSION: This study will examine the usefulness of an online public health intervention that aims to promote healthy sexual practices among North-Norwegian youngsters. If shown to be effective, the intervention could prove to be an affordable and widely accessible intervention to decrease risky sexual practices in younger population.

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. 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.

Usage Patterns of Telepsychology and Face-to-Face Psychotherapy: Clients' Profiles and Perceptions.

Background: Currently, most people who might need mental health care services do not receive them due to a number of reasons. Many of these reasons can be overcome by telepsychology, in other words, the use of ICT technologies for therapy (e.g., phone, videoconferencing, and apps); given that it facilitates access to specialized interventions. In fact, telepsychology is currently offered as an active service in many psychotherapy centers. However, its usage, how it is perceived, and who uses it are still largely unknown. Objective: The aim of this study was (1) to determine if any pattern exists in the usage of telepsychology and face-to-face psychology, (2) to clarify people's perception of telepsychology in terms of the advantages, barriers and efficacy of online psychotherapy, and (3) to examine usage patterns in terms of individual characteristics and identify patients' profiles. Methods: An online survey was conducted on a convenience sample of 514 subjects recluted by using an online advertisement. The inclusion criteria were: (1) to be older than 18 years old and (2) to answer completely the questionnaire. Cluster analysis, ANOVAs, and discriminant analysis were performed to test our research objectives. Results: Three usage clusters were found: (1) face-to-face psychotherapy (57%; n = 292); (2) non-therapy (36.8%; n = 189); and (3) combined face-to-face psychotherapy and telepsychology (6.4%; n = 33). In addition, the perception of telepsychology varied among usage clusters, but a common perception emerged about the main telepsychology advantages, barriers and efficacy. Finally, the results showed that personal characteristics differentiated people in each of these clusters. Conclusion: The most common form of access to psychotherapy is the face-to-face form but the second way of delivery was a combination between face to face and online psychotherapy (research objective 1). People who combine face to face with online psychotherapy perceives this last as more efficient and with less barriers to access (research objective 2). Finally, some characteristic as eHealth experience and sociodemographic variables can help to identify people that will attend telepsychology initiatives (research objective 3). These clusters provide insight into opportunities for face-to-face and online patient engagement strategies.

Public knowledge of low vision and blindness, and readability of on-topic online information.

PURPOSE: To explore the laymen knowledge of low vision and blindness concepts, and to assess the readability of some on-topic information available online. METHODS: A cross-sectional study was performed in March 2019. Knowledge was evaluated by means of an ad hoc questionnaire-survey with two dichotomous questions about concepts related to low vision and blindness, followed with a list of 10 true-or-false statements. Readability of two on-topic online texts of different complexity was evaluated asking participants to rate the difficulty they experienced on a Likert scale and, objectively, by means of the freeware INFLESZ Readability Scale for Spanish language. Data analysis included descriptive statistics, t-tests, and ANOVA test (statistical significance: p < 0.05). RESULTS: Fifty-two percent of 103 participants declared never having heard of low vision. Ninety-four percent participants were aware about the word blindness, although most of them misinterpreted it. Neither academic level nor age influenced knowledge (p > 0,05). Higher academic level was related to better readability scores of the complex online text (p < 0.05). CONCLUSION: Overall, the general public has a limited awareness of low vision and a large misconception of blindness. Therefore, visual health education actions should aim at fostering knowledge and literacy on the issue. This strategy may encourage individuals to seek the advice of eye care providers in order to prevent and treat visual impairment, with relevant consequences in time, both in terms of quality of life and costs.

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. 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.

Acceptance and Use of Telepsychology From the Clients' Perspective: Questionnaire Study to Document Perceived Advantages and Barriers.

BACKGROUND: Telepsychology is increasingly being incorporated in clinical practice, being offered in many psychotherapy centers, especially after the impact of the pandemic. However, there seems to be a remarkable discrepancy between the offer, or interest in, and real-world uptake of e-mental health interventions among the population. A critical precondition is clients' willingness to accept and use telepsychology, although this issue has thus far been overlooked in research. OBJECTIVE: The aim of this study was to examine people's acceptance and use of telepsychology by adopting an extended model of the unified theory of acceptance and use of technology (UTAUT) that integrates perceived telepsychology advantages and barriers, usefulness perceptions, behavioral intention, and telepsychology use. METHODS: An online survey was conducted with a convenience sample of 514 participants. Structural equation models were computed to test a mediation model. RESULTS: Results supported the UTAUT model to explain participants' acceptance and use of telepsychology. They showed a causal chain in which perceived telepsychology advantages and barriers were related to telepsychology use through the perceived usefulness of and intention to use telepsychology. CONCLUSIONS: Telepsychology use may be explained according to the UTAUT model when coupled with participants' perceptions of telepsychology advantages and barriers. Mental health stakeholders could consider these factors in order to increase the acceptance and use of telepsychology.

Biomedical Holistic Ontology for People with Rare Diseases.

This research provides a biomedical ontology to adequately represent the information necessary to manage a person with a disease in the context of a specific patient. A bottom-up approach was used to build the ontology, best ontology practices described in the literature were followed and the minimum information to reference an external ontology term (MIREOT) methodology was used to add external terms of other ontologies when possible. Public data of rare diseases from rare associations were used to build the ontology. In addition, sentiment analysis was performed in the standardized data using the Python library Textblob. A new holistic ontology was built, which models 25 real scenarios of people with rare diseases. We conclude that a comprehensive profile of patients is needed in biomedical ontologies. The generated code is openly available, so this research is partially reproducible. Depending on the knowledge needed, several views of the ontology should be generated. Links to other ontologies should be used more often to model the knowledge more precisely and improve flexibility. The proposed holistic ontology has many benefits, such as a more standardized computation of sentiment analysis between attributes.

Quality of life among parents of children with visual impairment: A literature review.

AIMS: To describe the experience of parents caregiving children with visual impairment (VI), to determine how their quality of life (QoL) is assessed, and to summarize QoL indicators through a review of the literature. METHODS: A thematic search through PubMed, PsycINFO, ProQuest and ERIC databases was performed of articles published in English in peer-reviewed journals between 1996 and 2016. Publications were included if they referred to both children or adolescents with VI and their parents, or the family context. The complete selection process disclosed 37 papers suitable for review. RESULTS: Researchers mainly used ad hoc interviews and questionnaires to investigate this topic. Two specific tools, the CarCGQoL (congenital glaucoma) and the OTI (congenital cataract), were identified. Most of the information collected referred to the parents' opinion concerning professional services, their needs and worries, the impact of VI on their emotional well-being and the strategies to assist parents to cope and adjust to the situation. CONCLUSIONS: The experience of caring for a child with VI is mainly influenced by psychosocial factors. Information and guidance to understand the child's visual condition are insufficient, and the available resources reinforce concerns of caregivers regarding the child's opportunities, expressed as negative emotional reactions.

Mining Facebook Data of People with Rare Diseases: A Content-Based and Temporal Analysis.

This research characterized how Facebook deals with rare diseases. This characterization included a content-based and temporal analysis, and its purpose was to help users interested in rare diseases to maximize the engagement of their posts and to help rare diseases organizations to align their priorities with the interests expressed in social networks. This research used Netvizz to download Facebook data, word clouds in R for text mining, a log-likelihood measure in R to compare texts and TextBlob Python library for sentiment analysis. The Facebook analysis shows that posts with photos and positive comments have the highest engagement. We also observed that words related to diseases, attention, disability and services have a lot of presence in the decalogue of priorities (which serves for all associations to work on the same objectives and provides the lines of action to be followed by political decision makers) and little on Facebook, and words of gratitude are more present on Facebook than in the decalogue. Finally, the temporal analysis shows that there is a high variation between the polarity average and the hour of the day.

[The use of Facebook in Spanish associations of rare diseases: how and what is it used for?]. / El uso de Facebook en asociaciones españolas de enfermedades raras: ¿cómo y para qué lo utilizan?

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.

Identifying Measures Used for Assessing Quality of YouTube Videos with Patient Health Information: A Review of Current Literature.

BACKGROUND: Recent publications on YouTube have advocated its potential for patient education. However, a reliable description of what could be considered quality information for patient education on YouTube is missing. OBJECTIVE: To identify topics associated with the concept of quality information for patient education on YouTube in the scientific literature. METHODS: A literature review was performed in MEDLINE, ISI Web of Knowledge, Scopus, and PsychINFO. Abstract selection was first conducted by two independent reviewers; discrepancies were discussed in a second abstract review with two additional independent reviewers. Full text of selected papers were analyzed looking for concepts, definitions, and topics used by its authors that focused on the quality of information on YouTube for patient education. RESULTS: In total, 456 abstracts were extracted and 13 papers meeting eligibility criteria were analyzed. Concepts identified related to quality of information for patient education are categorized as expert-driven, popularity-driven, or heuristic-driven measures. These include (in descending order): (1) quality of content in 10/13 (77%), (2) view count in 9/13 (69%), (3) health professional opinion in 8/13 (62%), (4) adequate length or duration in 6/13 (46%), (5) public ratings in 5/13 (39%), (6) adequate title, tags, and description in 5/13 (39%), (7) good description or a comprehensive narrative in 4/13 (31%), (8) evidence-based practices included in video in 4/13 (31%), (9) suitability as a teaching tool in 4/13 (31%), (10) technical quality in 4/13 (31%), (11) credentials provided in video in 4/13 (31%), (12) enough amount of content to identify its objective in 3/13 (23%), and (13) viewership share in 2/13 (15%). CONCLUSIONS: Our review confirms that the current topics linked to quality of information for patient education on YouTube are unclear and not standardized. Although expert-driven, popularity-driven, or heuristic-driven measures are used as proxies to estimate the quality of video information, caution should be applied when using YouTube for health promotion and patient educational material.

[Healthy eating support groups on Facebook: content and features]. / Grupos sobre alimentación saludable en Facebook: características y contenidos.

OBJECTIVE: To determine the features and use of groups related to healthy eating on Facebook. METHOD: We carried out a cross-sectional study through the Internet. Using the API on Facebook, we included open groups related to healthy eating in the Spanish language. The variables studied were name, description, category, the number and gender of users, date of creation, number of posts, content of the first 20 posts, and the most recent update. RESULTS: We selected 281 open groups for inclusion in the study. Of these, 125 were excluded because the content was unrelated to healthy eating. Finally 156 groups were studied with 14,619 users (10,373 women [71%] and 3,919 men [26.8%]). Dietary products were promoted by 40% of the groups. CONCLUSIONS: Facebook is used as a means of communication and for sharing health information. Because many of these groups promote dietary products, their usefulness for health education is doubtful. Health organizations should participate in social media.

Social media in health--what are the safety concerns for health consumers?

Recent literature has discussed the unintended consequences of clinical information technologies (IT) on patient safety, yet there has been little discussion about the safety concerns in the area of consumer health IT. This paper presents a range of safety concerns for consumers in social media, with a case study on YouTube. We conducted a scan of abstracts on 'quality criteria' related to YouTube. Five areas regarding the safety of YouTube for consumers were identified: (a) harmful health material targeted at consumers (such as inappropriate marketing of tobacco or direct-to-consumer drug advertising); (b) public display of unhealthy behaviour (such as people displaying self-injury behaviours or hurting others); (c) tainted public health messages (i.e. the rise of negative voices against public health messages); (d) psychological impact from accessing inappropriate, offensive or biased social media content; and (e) using social media to distort policy and research funding agendas. The examples presented should contribute to a better understanding about how to promote a safe consumption and production of social media for consumers, and an evidence-based approach to designing social media interventions for health. The potential harm associated with the use of unsafe social media content on the Internet is a major concern. More empirical and theoretical studies are needed to examine how social media influences consumer health decisions, behaviours and outcomes, and devise ways to deter the dissemination of harmful influences in social media.

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. 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.

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. 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.

A Pilot Study Designing a Website to Enhance the Well-Being of Caregivers of Children with Cerebral Palsy / Estudio piloto de diseño de un sitio web para el bienestar de cuidadores de niños con parálisis cerebral

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.