Women living with fibromyalgia during the COVID-19 pandemic: A qualitative study.

We explored the experiences of women with fibromyalgia during the COVID-19 pandemic from a qualitative approach by interviewing eighteen women. We identified seven main themes after performing a thematic analysis: pain description, pain triggers, impact, coping strategies, treatment for pain, pain onset and general situation. In general, pain worsened during the pandemic, and activity restrictions and changes in social interactions were particularly related with that. Pain negatively impacted different life domains: mental health, physical health, cognitive status, social activities and daily activities. Coping strategies varied slightly after the pandemic outbreak, and treatment was interrupted for some women. Results reflect that the pandemic was challenging for women living with fibromyalgia, and highlight the need to develop specific interventions for them in the context of potential future health emergencies.

Women's body dissatisfaction, physical appearance comparisons, and Instagram use throughout the COVID-19 pandemic: A longitudinal study.

OBJECTIVE: This study aimed to determine the evolution of Instagram use, body dissatisfaction and physical appearance comparisons throughout the coronavirus disease-2019 (COVID-19) pandemic, and to explore whether there was a relationship between the changes in Instagram use throughout the pandemic and body dissatisfaction and physical appearance comparisons. METHOD: A total of 272 Spanish women (16-70 years old) were followed-up across four waves of assessment between November 2019 (before the pandemic started) and July 2021. Body dissatisfaction, social appearance comparisons, and Instagram use were assessed using the Eating Disorders Inventory-3, the Physical Appearance Comparison Scale-Revised, and an ad hoc questionnaire for Instagram use, respectively. RESULTS: No statistically significant changes were found in the frequency of Instagram use, nor on the proportion of women following appearance-focused accounts on Instagram, among the data collection periods. Body dissatisfaction significantly increased from T1 to T4, and physical appearance comparisons significantly increased from T1 to T2, T3, and T4. These increases were not found to be significant for those with eating disorder risk. No significant differences were found in body dissatisfaction and physical appearance comparisons depending on whether participants' frequency of Instagram use had changed or remained the same, or whether they had started/stopped/continued following appearance-focused accounts on Instagram during the pandemic. DISCUSSION: Women's body dissatisfaction and physical appearance comparisons seem to have increased throughout the pandemic. The experiences of individuals with eating disorder risk throughout the pandemic, and the relationship between the pandemic and Instagram use, might be complex and need further research. PUBLIC SIGNIFICANCE: This study suggests that women's body dissatisfaction and physical appearance comparisons have increased throughout the COVID-19 pandemic. However, this increase might not be as clear for those who had eating disorder risk before the pandemic. Instagram frequency of use, and the percentage of women following appearance-focused accounts on Instagram, do not seem to have significantly increased. More research is needed to explore the impact of the pandemic.

Chronic neck and low back pain from personal experiences: a written narrative approach.

Background: Chronic neck and low back pain are very common and have detrimental effects for people and society. In this study, we explore the experiences of individuals with neck and/or back pain using a written narrative methodology. Materials & methods: A total of 92 individuals explained their pain experience using written narratives. Narratives were analyzed through thematic analysis and text data mining. Results: Participants wrote about their experience in terms of pain characteristics, diagnosis process, pain consequences, coping strategies, pain triggers, well-being and future expectations. Text data mining allowed us to identify concurrent networks that were basically related with pain characteristics, management and triggers. Conclusion: Written narratives are useful to understand individuals' experiences from their point of view.

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Early treatment for children with mental health problems and genetic conditions through a parenting intervention (The GAP): study protocol for a pragmatic randomized controlled trial.

BACKGROUND: Children with genetic conditions are at increased risk for mental health and neurodevelopmental problems, often accompanied by significant parental distress. Genetic and family factors can impact children and parents' mental health. Early parenting interventions, like the Incredible Years® programs, have demonstrated to improve parental distress and children's mental health. The recent version for young children with language delays or autism spectrum disorder (IY-ASLD®) has shown to be feasible and effective to support parents in their children's developmental trajectories. The effectiveness of treatments for children with genetic conditions and neurodevelopmental problems is largely unexplored, leaving significant gaps in evidence-based options. Clinicians lack guidance, especially when patients exhibit language or social communication impairments but do not meet diagnostic criteria for a full-blown autism spectrum disorder (ASD). We aim to fill this gap, providing evidence on the feasibility and effectiveness of the IY-ASLD® intervention for such patients. METHODS: We designed a prospective multicenter pragmatic randomized controlled trial including approximately 68 children aged 3 to 7 years, recruited from three tertiary care reference hospitals. Inclusion criteria will necessitate genetic confirmation of a neurodevelopmental disorder along with language, communication, or socialization difficulties. Individuals with an ASD diagnosis will be excluded. All subjects are included in a territorial register for rare conditions (ReMin, Registre de Malalties Minoritàries de Catalunya). Families will randomly be assigned to the intervention or the control group. The intervention will be held online by clinical psychologists and child and adolescent psychiatrists. DISCUSSION: Our group has recently piloted the online implementation of the IY-ASLD® intervention for the first time in Spain, for parents of children with language delays, socialization difficulties, or ASD, but not genetically determined. Our multicenter research consortium is well-positioned to recruit patients with rare conditions and implement efficient treatment pathways within the National Health System. Given the geographical dispersion of families affected by rare conditions, the online format offers logistical advantages and improved therapy access, enhancing homogeneity across all patients. The results of this study will inform clinicians and policymakers about evidence-based treatment options for this vulnerable and overlooked group of young children. TRIAL REGISTRATION: ClinicalTrials.gov NCT06125093 . Date of registration: first submitted 2023-10-23; first posted 2023-11-09. URL of trial registry record.

Written narratives to understand the experience of individuals living with fibromyalgia.

PURPOSE: To explore the experiences of individuals with fibromyalgia (FM) through written narratives (WN) and to preliminarily investigate the potential value of these narratives for healthcare professionals in assessing the overall perceived severity and disability experienced by individuals with FM. MATERIALS AND METHODS: This cross-sectional study was conducted with 46 participants with a FM diagnosis. They were asked to complete a WN task that aimed to capture their personal experiences. The degree of severity and disability expressed in their texts was assessed by researchers, and participants were also asked to complete the Revised Fibromyalgia Impact Questionnaire (FIQR), the Hospital Anxiety and Depression Scale (HAD), and the Tampa Scale for Kinesophobia. RESULTS AND CONCLUSIONS: Eight main themes were identified after qualitatively analysing the narratives provided by participants: story of their illness, FM characteristics, other illnesses, impact, coping strategies, social support, pain triggers and treatments. Pain emerges as a profound symptom affecting mental, physical, and social well-being, with diverse triggers and coping mechanisms. Participants highlighted difficulties in the diagnostic process, used multiple treatment strategies, and expressed a lack of understanding from healthcare professionals and society. There were significant correlations between researchers' assessments of severity and disability of the writings and FIQR and HAD scores. This study emphasises the value of narratives in capturing the multifaceted nature of FM experiences and hints at their potential for clinical understanding and management.

Implementation of a virtual community of practice to promote the empowerment of middle-aged people with multimorbidity: study protocol of a randomised controlled trial.

INTRODUCTION: Empowering people living with multimorbidity (multiple chronic conditions) to gain greater confidence in managing their health can enhance their quality of life. Education focused on self-management is a key tool for fostering patient empowerment and is mostly provided on an individual basis. Virtual communities of practice (VCoP) present a unique opportunity for online education in chronic condition self-management within a social context. This research aims to evaluate the effectiveness/cost-effectiveness of individualised, online self-management education compared with VCoP among middle-aged individuals living with multiple chronic conditions. METHODS AND ANALYSIS: People aged 30-60, living with ≥2 chronic conditions and receiving care in primary care (PC) centres and outpatient hospital-based clinics in Madrid and Canary Islands will enrol in an 18-month parallel-design, blinded (intervention assessment and data analysts), pragmatic (adhering to the intention-to-treat principle), individually randomised trial. The trial will compare two 12-month web-based educational offers of identical content; one delivered individually (control) and the other with online social interaction (VCoP, intervention). Using repeated measures mixed linear models, with the patient as random effect and allocation groups and time per group as fixed effects, we will estimate between-arm differences in the change in Patient Activation Measure from baseline to 12 months (primary endpoint), including measurements at 6-month and 18-month follow-up. Other outcomes will include measures of depression and anxiety, treatment burden, quality of life. In addition to a process evaluation of the VCoP, we will conduct an economic evaluation estimating the relative cost-effectiveness of the VCoP from the perspectives of both the National Health System and the Community. ETHICS AND DISSEMINATION: The trial was approved by Clinical Research Ethics Committees of Gregorio Marañón University Hospital in Madrid/Nuestra Señora Candelaria University Hospital in Santa Cruz de Tenerife. The results will be disseminated through workshops, policy briefs, peer-reviewed publications and local/international conferences. TRIAL REGISTRATION NUMBER: NCT06046326.

Global Healthcare Needs Related to COVID-19: An Evidence Map of the First Year of the Pandemic.

The COVID-19 pandemic has exposed gaps and areas of need in health systems worldwide. This work aims to map the evidence on COVID-19-related healthcare needs of adult patients, their family members, and the professionals involved in their care during the first year of the pandemic. We searched the databases MEDLINE, Embase, and Web of Science. Two reviewers independently screened titles and abstracts and assessed full texts for eligibility. Disagreements were resolved by consensus. Descriptive data were extracted and inductive qualitative content analysis was used to generate codes and derive overarching themes. Thirty-six studies met inclusion criteria, with the majority reporting needs from the perspective of professionals (35/36). Professionals' needs were grouped into three main clusters (basic, occupational, and psycho-socio-emotional needs); patients' needs into four (basic, healthcare, psycho-socio-emotional, and other support needs); and family members' needs into two (psycho-socio-emotional and communication needs). Transversal needs across subgroups were also identified and grouped into three main clusters (public safety, information and communication, and coordination and support needs). This evidence map provides valuable insight on COVID-19-related healthcare needs. More research is needed to assess first-person perspectives of patients and their families, examine whether needs differ by country or region, and evaluate how needs have evolved over time.

Developing the University of Tartu in Estonia into a well-networked Patient Safety Research Centre (PATSAFE): A study protocol.

Background: Patient safety (PS) is a serious global public health problem affecting all countries. Estimates show that around 10 percent of the patients are harmed during hospital care, resulting in 23 million disability-adjusted life years lost per year. Experts emphasize research advancements as a key precondition for safer care. Aim: The Patient Safety Research Centre (PATSAFE) project enhances the Institute of Clinical Medicine of the University of Tartu's (ICM-UT) research potential and capacities in PS in order to improve and strengthen knowledge and skills in methods, techniques and experience for PS research. Methods: A strategic partnership with Avedis Donabedian Research Institute in Spain, and IQ Healthcare in the Netherlands, both international leaders in PS research, enables the development of a long-lasting knowledge exchange, allowing the ICM-UT to capitalise on its current achievements and to overcome gaps in scientific excellence in the field of PS research. These twining activities will strengthen and raise the research profile of the ICM-UT academic staff and early-stage researchers (ESRs), by implementing the hands-on training on methods, techniques, and experience in PS research. The project also encourages the active participation of ESRs in PS research by increasing their soft skills, to ensure the continuity and sustainability of PS research in ICM-UT. Finally, development of the research strategy on PS contributes to the long-term sustainability of PS research in Estonia. To implement these activities, PATSAFE foresees a comprehensive strategy consisting of knowledge exchange, soft research skills capacity building, strategic planning, and strong dissemination and exploitation efforts. Expected results: As a result of the project, ICM-UT will have the capacity to carry out PS research using the appropriate methodology and the competences to apply state-of-the-art evidence-based strategies for PS research.

The impact of COVID-19 lockdown on social network sites use, body image disturbances and self-esteem among adolescent and young women.

OBJECTIVE: This study aimed to determine the impact of COVID-19 lockdown on social network sites (SNS) use and to explore whether SNS use is associated with body image disturbances and low self-esteem. METHODS: A total of 2601 women living in Spain aged 14-35 years completed questionnaire measures of SNS use, self-esteem, body dissatisfaction and drive for thinness. In the survey, participants were asked about their use of SNS at the moment of answering the survey and before lockdown. RESULTS: A statistically significant increase was found in the frequency of use of all studied SNS (Instagram, YouTube, TikTok, Twitter and Facebook) during lockdown, as well as in the number of women following appearance-focused Instagram accounts. Moreover, significant relationships were found between the frequency of Instagram use and body dissatisfaction, drive for thinness and low self-esteem in the younger age group (14-24), and between the frequency of Instagram use and drive for thinness in the older age group (25-35). Following appearance-focused accounts on Instagram was related to body dissatisfaction and drive for thinness in the younger group, and only to drive for thinness in the older group (25-35). Following appearance-focused accounts on Instagram and a higher frequency of use of Instagram significantly predicted higher levels of drive for thinness. CONCLUSION: These results suggest that lockdown has had an impact on SNS use, and this might be linked to increased drive for thinness and eating disorder risk among adolescent and young women.