The burden of global outbreaks: Photos of the daily lives of children with congenital Zika syndrome during the COVID-19 pandemic.

INTRODUCTION: In Brazil, more than 3500 children with congenital Zika syndrome (CZS) face difficulties participating in activities of daily living, which may be aggravated by health emergencies, such as the COVID-19 pandemic. Participation could be defined as the individual's involvement in daily life situations, and participation restrictions are problems that may arise in involvement in everyday situations. AIM: To explore the daily lives of children with CZS during the COVID-19 pandemic using photographic narratives captured by mothers and discuss possible strategies to improve participation results. METHODS: In this participatory action research, seven young Brazilian mothers acted as co-researchers using photovoice to describe the experiences of their children with CZS (from 2 to 5 years old). Also, mothers contributed to validate the contents. The research was conducted online and included the following steps: pilot study, recruitment, individualized training, sociodemographic interview, photovoice training, photo taking, focus group for contextualization, data transcription and analysis and validation of analyses by the mothers. RESULTS: Content analysis revealed five categories that influenced the participation of the children: participation preferences, family relationships, access to healthcare, access to education and social isolation. Regarding participation preferences, mothers reported their children's desire to play with peers and family members and have autonomy. Mothers described the family environment as a happy, peaceful and safe place for the children. Lack of therapy was perceived to negatively impact the health of children; thus, treatments were considered essential for child development. Access to education included accessibility of remote education and a perceived lack of infrastructure and pedagogical preparation. Last, social isolation due to COVID-19 directly affected the daily lives and behaviour of the children, interrupting therapies and medical appointments. CONCLUSION: The photos and narratives captured several aspects of the daily lives of children with CZS impacted by the COVID-19 pandemic, reinforcing the importance of considering the negative effects of social isolation and offering education and social assistance to promote participation and integral health. PATIENT/PUBLIC CONTRIBUTION: Consistent with a participatory action research framework, Mothers acted as co-researchers and participated in all stages of the research, especially in validating the data analysed by the researchers.

Physical therapies for postural abnormalities in people with cystic fibrosis.

BACKGROUND: Cystic fibrosis (CF) is the most common life-threatening, inherited disease in white populations which causes several dysfunctions, including postural abnormalities. Physical therapy may help in some consequences of these postural abnormalities, such as pain, trunk deformity and quality of life. OBJECTIVES: To determine the effects of a range of physical therapies for managing postural abnormalities in people with cystic fibrosis, specifically on quality of life, pain and trunk deformity. SEARCH METHODS: We searched the Cochrane Cystic Fibrosis Trials Register, compiled from electronic database searches, hand-searched journals and conference abstract books. We also searched the reference lists of relevant articles and reviews. Additional searches were conducted on ClinicalTrials.gov and on the WHO International Clinical Trials Registry Platform for any planned, ongoing and unpublished studies. Date of the last search: 19 March 2020. SELECTION CRITERIA: Randomised controlled trials examining any modality of physical therapy considered relevant for treating postural disorders compared with each other, no physical therapy, sham treatment or usual care in people with CF (of any age or disease severity). DATA COLLECTION AND ANALYSIS: Two review authors independently selected eligible trials, assessed the risk of bias in each trial and extracted the data. We contacted trial authors to obtain missing or additional information. We assessed the quality of the evidence using the GRADE criteria. MAIN RESULTS: Two trials, involving a total of 50 participants with CF and postural abnormalities, were included in this review. One was in people with stable disease (lasting three months) and one in hospital inpatients experiencing an exacerbation (20 days). Both trials compared manual therapy comprising mobilizations to the rib cage and thoracic spine, treatment of specific muscle dysfunction or tight muscle groups; and postural awareness and education versus medical usual care. The age of participants ranged from 17 years to 58 years. Both trials were conducted in the UK. The following outcomes were measured: change in quality of life, change in pain, change in trunk deformity and change in pulmonary function. Manual therapy may make little or no difference to the change in trunk deformity compared to usual care (low-quality evidence). No results could be analysed for quality of life (very low-quality evidence) and pain outcomes (very low-quality evidence) because of the high heterogeneity between trials. It is uncertain whether the intervention improves lung function: forced vital capacity (very low-quality evidence); forced expiratory volume in one second (very low-quality evidence); or Tiffeneau's index (ratio of forced expiratory volume at one second (FEV1) and forced vital capacity (FVC)). Only one trial (15 participants) measured functional capacity, and the change in walked distance seemed to favour intervention over usual care, but with the possibility of no effect due to wide confidence intervals. The same trial also reported that six participants in the intervention group had positive comments about the intervention and no adverse events were mentioned. AUTHORS' CONCLUSIONS: Due to methodological limitations in the included trials, and in addition to the very low to low quality of the current evidence, there is limited evidence about the benefits of physical therapies on postural abnormalities in people with CF. Therefore, further well-conducted trials with robust methodologies are required considering a prior inclusion criterion to identify the participants who have postural abnormalities.