Adolescents' social needs living with juvenile idiopathic arthritis and their views about digital resources.

BACKGROUND: Juvenile Idiopathic Arthritis (JIA) and its related symptoms (e.g. pain) have been associated with interference in the daily life of adolescents with JIA including their friendships. There is little research in that sense and in consequence, interventions designed to improve this area. The objectives of this study are 1) to gain knowledge about the needs of adolescents with JIA, particularly focused on their friendships; 2) to explore the potential of the Internet to help them, and 3) to determine what kind of online resource would be the best and what elements it should include. METHODS: To achieve the proposed objectives we designed a qualitative study including two phases: the first one exploratory (semi-structured interviews) and the following, confirmatory (online focus group). RESULTS: 14 adolescents were interviewed and 7 participated in the focus group. They reported some social challenges related to their illness: feeling different, criticized by peers, or not believed. Additionally, they specified some of the coping strategies they used, such as disclosing to others that they have JIA, using communication skills, maintaining activities with friends, trying to minimize pain, and ignoring negative comments. Adolescents considered an online resource useful and mentioned that they would like to find general information and to have the possibility to interact with others. They considered Instagram and WhatsApp as good platforms to implement the online resource. CONCLUSIONS: According to their perceptions, adolescents with JIA can benefit from an online resource which delivers information, strategies and facilitates interaction with others.

What Mechanisms do Children and Adolescents with Chronic Pain Use to Manage their Friendships? A Review of the Literature / ¿Qué mecanismos utilizan los niños y adolescentes que padecen dolor crónico para gestionar sus amistades? Revisión de la literatura científica

This study review the available literature about friendships of children and adolescents with chronic pain, focusing on the mechanisms they use to face challenges in their relationships and the theories studies use to address this topic. We conducted a search in PubMed, PsycINFO, and WOS from inception to August 2017. We included peer-reviewed primary studies with a specific subgroup analysis of friendships in children and adolescents (6-18 years old) with the following conditions: lower limb pain, neck and shoulder pain, back pain, abdominal pain, headache and migraines, fibromyalgia, and complex regional pain syndrome. Twenty empirical articles were selected. From these studies, 18 mechanisms and 6theories were identified. Studies show a high variability in the methodologies employed, as well as in the way they define friendships experience. Finally, very few of the studies selected are theory-based

Este estudio revisa las publicaciones científicas disponibles sobre las amistades de niños y adolescentes que padecen dolor crónico centrándose en los mecanismos que utilizan para afrontar los desafíos que sus relaciones les plantean y las teorías utilizadas por los estudios para abordar este tema. Llevamos a cabo una búsqueda en PubMed, PsycINFO y WOS desde los inicios hasta agosto de 2017. Incluimos estudios primarios de revisión por pares con un subgrupo de análisis específico de las amistades en niños y adolescentes (entre 6 y 18 años), con las siguientes condiciones: dolor en las extremidades inferiores, dolor de cuello y hombros, dolor de espalda, dolor abdominal, dolor de cabeza y migrañas, fibromialgia y síndrome de dolor regional complejo. Se seleccionaron 20 artículos empíricos, a partir de los cuales se detectaron 18 mecanismos y 6 teorías. Los estudios muestran gran variabilidad en la metodología utilizada, así como en el modo de definir la experiencia de las amistades. Por último, muy pocos de los estudios elegidos están basados en la teoría

Understanding the Experience of Functional Abdominal Pain Through Written Narratives by Families.

OBJECTIVE: Although functional abdominal pain (FAP) is one of the most common pain problems in children, there is a lack of qualitative studies on this topic. Our aim was to increase knowledge in this field by testing an innovative written narrative methodology designed to approach the experiences of children with FAP and their parents. METHODS: We analyzed the FAP experiences of 39 families who completed a written narrative task (children and parents separately). Some of the families (N = 20) had previously completed an online psychosocial intervention, whereas others had not, because a complementary objective was to explore possible differences between parent and child narratives, and between those who had and had not completed the intervention. RESULTS: Families wrote about abdominal pain (characteristics, triggers, pain consequences, and coping strategies), their well-being, the diagnostic process, future expectations, and the positive effects of an online psychosocial intervention. Children tended to mention pain characteristics more, whereas parents tended to write more about triggers and the diagnostic process. CONCLUSIONS: A written narrative methodology was found to be a useful approach for understanding families' experiences. Results confirmed that FAP affects families at the emotional, behavioral, and social levels and that an online psychosocial intervention can help families.

Adolescents social needs living with juvenile idiopathic arthritis and their views about digital resources

Abstract Background: Juvenile Idiopathic Arthritis (JIA) and its related symptoms (e.g. pain) have been associated with interference in the daily life of adolescents with JIA including their friendships. There is little research in that sense and in consequence, interventions designed to improve this area. The objectives of this study are 1) to gain knowledge about the needs of adolescents with JIA, particularly focused on their friendships; 2) to explore the potential of the Internet to help them, and 3) to determine what kind of online resource would be the best and what elements it should include. Methods: To achieve the proposed objectives we designed a qualitative study including two phases: the first one exploratory (semi-structured interviews) and the following, confirmatory (online focus group). Results: 14 adolescents were interviewed and 7 participated in the focus group. They reported some social challenges related to their illness: feeling different, criticized by peers, or not believed. Additionally, they specified some of the coping strategies they used, such as disclosing to others that they have JIA, using communication skills, maintaining activities with friends, trying to minimize pain, and ignoring negative comments. Adolescents considered an online resource useful and mentioned that they would like to find general information and to have the possibility to interact with others. They considered Instagram and WhatsApp as good platforms to implement the online resource. Conclusions: According to their perceptions, adolescents with JIA can benefit from an online resource which delivers information, strategies and facilitates interaction with others.(AU)

Quantitative and qualitative testing of DARWeb: An online self-guided intervention for children with functional abdominal pain and their parents.

The main objective of this study was to preliminary explore the effects of DARWeb on different outcomes. A Quasi-experimental, one-group, pretest-posttest design was used. Parents and children were asked to complete questionnaires and questions (separately) about quality of life, abdominal pain severity, and satisfaction. Semi-structured interviews with families were also performed. This study focuses on 17 families. Results showed that parent's ratings of children's abdominal pain severity were significantly lower after finishing the intervention and at the 3-month follow-up, and quality of life scores had increased significantly after 3 months. From children's ratings, mean abdominal pain severity scores were significantly lower after the intervention compared to the preintervention assessment. Both parents and children were quite satisfied with the intervention. In qualitative interviews, families suggested that DARWeb helped them to give less importance to pain and to learn coping strategies. In conclusion, this study showed the potential usefulness of DARWeb for children with functional abdominal pain and for their parents.

Effects and Experiences of Families Following a Web-Based Psychosocial Intervention for Children with Functional Abdominal Pain and Their Parents: A Mixed-Methods Pilot Randomized Controlled Trial.

PURPOSE: To evaluate post-treatment efficacy of DARWeb (online psychosocial intervention for children with functional abdominal pain) using a randomized clinical trial design and combining quantitative and qualitative data. PATIENTS AND METHODS: Twenty-five families with children with FAP in the experimental group (EG: accessed to DARWeb) and 36 in the control group (CG: wait-list) were compared. Children and parents completed measures of abdominal pain severity (primary outcome), quality of life, and satisfaction. Moreover, children completed measures of depression, functional disability, catastrophizing and coping strategies; parents completed measures about parental responses to their children's pain. Families also answered open questions and were interviewed. RESULTS: A higher percentage of children in the EG achieved a significant clinical change in abdominal pain severity from the parents' perspective (28% in the EG vs 8.33% in the CG). There was a significantly greater reduction in pain frequency in the EG compared to the CG (both from the children's and parents' perspectives) from mixed repeated-measures analyses of variance (there was not a significant interaction in total scores of pain severity). A higher percentage of children in the EG improved in quality of life and depression compared to the CG (results from mixed methods repeated-measures analyses of variances were not significant). However, there were no differences for disability, pain catastrophizing or the coping strategies assessed from the children's perspective; neither from the parents' assessment of quality of life. There were significant interactions for parents' solicitousness responses and promotion of well behaviors in the expected directions. Families were quite satisfied with the intervention, and the qualitative results confirmed an improvement in pain and having learned important coping strategies. CONCLUSION: Our results support the efficacy of our intervention, but future studies are needed with different profiles of initial severity of the pain problem, longer follow-ups, and other conditions.

Impact of Prefrontal Theta Burst Stimulation on Clinical Neuropsychological Tasks.

Theta burst stimulation (TBS) protocols hold high promise in neuropsychological rehabilitation. Nevertheless, their ability to either decrease (continuous, cTBS) or increase (intermittent, iTBS) cortical excitability in areas other than the primary motor cortex, and their consistency modulating human behaviors with clinically relevant tasks remain to be fully established. The behavioral effects of TBS over the dorsolateral prefrontal cortex (dlPFC) are particularly interesting given its involvement in working memory (WM) and executive functions (EF), often impaired following frontal brain damage. We aimed to explore the ability of cTBS and iTBS to modulate WM and EF in healthy individuals, assessed with clinical neuropsychological tests (Digits Backward, 3-back task, Stroop Test, and Tower of Hanoi). To this end, 36 participants were assessed using the four tests 1 week prior to stimulation and immediately following a single session of either cTBS, iTBS, or sham TBS, delivered to the left dlPFC. No significant differences were found across stimulation conditions in any of the clinical tasks. Nonetheless, in some of them, active stimulation induced significant pre/post performance modulations, which were not found for the sham condition. More specifically, sham stimulation yielded improvements in the 3-back task and the Color, Color-Word, and Interference Score of the Stroop Test, an effect likely caused by task practice. Both, iTBS and cTBS, produced improvements in Digits Backward and impairments in 3-back task accuracy. Moreover, iTBS increased Interference Score in the Stroop Test in spite of the improved word reading and impaired color naming, whereas cTBS decreased the time required to complete the Tower of Hanoi. Differing from TBS outcomes reported for cortico-spinal measures on the primary motor cortex, our analyses did not reveal any of the expected performance differences across stimulation protocols. However, if one considers independently pre/post differences for each individual outcome measure and task, either one or both of the active protocols appeared to modulate WM and EF. We critically discuss the value, potential explanations, and some plausible interpretations for this set of subtle impacts of left dlPFC TBS in humans.

Psicología 2.0: oportunidades y retos para el profesional de la psicología en el ámbito de la eSalud / Psychology 2.0: opportunities and challenges for the psychology professional in the field of ehealth

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 people’s 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

Testing the Feasibility of DARWeb: An Online Intervention for Children With Functional Abdominal Pain and Their Parents.

OBJECTIVES: To test the feasibility of an online intervention (DARWeb) for children with functional abdominal pain and their families. METHODS: An online intervention (with 7 units for children and 7 for parents) was developed from a cognitive-behavioral perspective. A total of 15 families were given access to the intervention and asked to rate their satisfaction with each unit and the overall program (using scales from 0 to 10). Moreover, they were interviewed at the end of the program to obtain more information about their impressions of the program. RESULTS: Nine families (60%) completed the entire program. Parents rated each unit above a median of 8; children also rated all of the units except the first 2 above a median of 8. Global ratings were also very positive. Qualitative data reinforce the idea that the participants were quite satisfied with the intervention, they appreciated the fact that it was online, and they learned coping strategies (they were especially happy with relaxation) and to give less importance to pain. Although they appreciated the available resources, they would like to have more multimedia and interactive resources, and some form of professional contact. Parents also suggest that it was a burden (in terms of time) to supervise their children's progress in the program. DISCUSSION: DARWeb has been shown to be a feasible intervention, and it seems to be well designed. However, some improvements need to be considered based on the experiences of these participating families, and further research should be conducted to test its efficacy.

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.

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.

Paediatricians' perceptions of a potential online psychosocial intervention for children with recurrent abdominal pain.

AIMS: To evaluate paediatricians' perceived effectiveness of an online psychosocial intervention for children with recurrent abdominal pain (RAP). Also, to explore which elements of this intervention they would consider necessary when applied in the clinical context. METHODS: A total of 131 paediatricians affiliated to Catalan and Balearic paediatric societies completed an online survey about how effective they would perceive an online psychosocial intervention for RAP (for reducing pain intensity, reducing disability and preventing chronicity) and how this intervention should be carried out. They were asked about the perceived effectiveness of the standard medical treatments they routinely applied for RAP and also their opinion of face-to-face psychosocial interventions. RESULTS: A face-to face psychosocial intervention was considered better (to reduce pain intensity, reduce disability and prevent chronic pain) than an online psychological intervention and the standard medical treatment. Online and face-to-face psychosocial interventions are considered equally useful for children with mild disability, but a face-to-face psychosocial intervention is considered better for those with moderate and severe levels of disability. Paediatricians considered that an online psychosocial intervention for children with RAP should be simple and consistent; it should provide easy access for users; and its interface should be easy to use and attractive. CONCLUSIONS: Paediatricians show a positive attitude towards a potential online psychosocial intervention for children and adolescents with RAP. However, they do not use the Internet for offering health care, and they would prefer a face-to-face psychosocial intervention.

Burden on Caregivers of Children with Cerebral Palsy: Predictors and Related Factors / Carga de los cuidadores de niños con parálisis cerebral: predictores y factores relacionados

The main objective of this research was to explore which factors best predict the occurrence of burden on primary caregivers of children with cerebral palsy (CP). Understanding these factors enables the identification of those caregivers at risk of having their physical and psychological health adversely affected, and the implementation of intervention strategies to reduce the negative impact of caring on parents of children with chronic medical conditions. The study sample consisted of a total of 62 caregivers (89% women) aged between 30 and 54 years (Mean = 41.98, SD = 5.64). CP affected children were aged between 1 and 17 years (Mean = 7.69, SD = 4.18) and the average degree of disability (% reflected in the medical record assessed by the Ministry of health, social services and equality of Spain) was 77.098 (scale of 100) (SD = 14.62). A burden model was constructed based on multiple linear regressions. The model included the following variables: degree of disability, depression (assessed by Beck Depression Inventory-II) and self-efficacy (measured by the Revised Scale for Caregiving Self-Efficacy). The regression model explained 40.9% of the total variance. It was found that self-efficacy had a negative linear association with burden, while the degree of disability and depression showed a positive linear association. The most important predictors of caregiver burden were degree of disability, depression and self-efficacy. For this reason, we believe that it is necessary to develop interventions to reduce depression and enhance self-efficacy in parents of children with CP as one of the primary objectives for minimizing the burden on caregivers of disabled children.

El objetivo principal de esta investigación fue explorar cuáles son los factores que mejor predicen la ocurrencia de la carga sobre los cuidadores primarios de niños con parálisis cerebral (CP). La comprensión de estos factores permite identificar cuidadores en riesgo de presentar problemas físicos o psicológicos y la implementación de estrategias de intervención para reducir el impacto negativo del cuidado de los padres de niños con condiciones médicas crónicas. La muestra del estudio consistió en un total de 62 cuidadores (89 % mujeres) con edades entre 30 y 54 años (M = 41.98, DE = 5.64). Los niños con CP afectados tenían edades entre 1 y 17 años (M = 7.69, DE = 4.18) y el grado promedio de discapacidad (% reflejado en la historia clínica evaluada por el Ministerio de Salud, Servicios Sociales e Igualdad de España ) fue de 77.098 (escala sobre 100) (DE = 14.62). Se construyó un modelo de carga basado en regresiones lineales múltiples. El modelo incluyó las siguientes variables: grado de discapacidad, la depresión (evaluada por el Inventario de Depresión de Beck -II) y auto-eficacia (medida por la Escala Revisada de Autoeficacia para Cuidado). El modelo de regresión explicó 40.9 % de la varianza total. Se encontró que la autoeficacia tenía una asociación lineal negativa con la carga, mientras que el grado de discapacidad y depresión mostró una asociación lineal positiva. Los predictores más importantes de la carga de los cuidadores fueron el grado de discapacidad, la depresión y la autoeficacia. Por esta razón, creemos que es necesario desarrollar intervenciones para reducir la depresión y aumentar la auto-eficacia en padres de niños con CP como uno de los objetivos primordiales para reducir al mínimo la carga de los cuidadores de niños con discapacidad.

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. 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.

El Cuestionario de Disposición al Engaño en el Deporte (CDED): su aplicación a jóvenes deportistas / Disposition to cheating in sport questionnaire (CDED): its application to young athletes

El objetivo de este estudio ha sido desarrollar, adaptar y analizar las propiedades psicométricas de un Cuestionario de Disposición al Engaño en el Deporte (CDED), derivado del Attitudes to Moral Decision-making in Youth Sport Questionnaire. La muestra estaba formada por 110 adolescentes (70 niños y 41 niñas) con una media de edad de 14.65 años (Rango: 10 - 19 años; DE = 2.09 años). Los resultados muestran que el cuestionario CDED, formado por las dos subescalas Aceptación del engaño y Aceptación de la astucia, discrimina correctamente, con una fiabilidad y una validez factorial aceptables, entre las variables de la muestra estudiada (AU)

The aim of this study was to analyze the psychometric properties of the Disposition to Cheating in Sport Questionnaire (CDED), derived from the Attitudes to Moral Decision-Making in Youth Sport Questionnaire (AMDYSQ-1, Lee, Whitehead and Ntoumanis, 2007). The sample included 110 adolescents (70 boys and 41 girls) with a mean age of 14.65 (Range: 10-19; SD = 2.09 years). The results show that the CDED, composed of the Acceptance of Cheating and Acceptance of Gamesmanship subscales, discriminates the population’s variables acceptably and demonstrates an acceptable reliability and factorial validation (AU)

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.