Self-compassion is increasingly recognised as an important and beneficial factor in quality of life and mental health-related research, but research within the adult cystic fibrosis (CF) population is scarce. In a cross-sectional study, 114 (56 female, 58 male) adults with CF completed and returned a series of validated questionnaires that assessed CF-related quality of life, negative emotional states (depression, anxiety and stress), self-compassion, and self-criticism. Quality of life and self-compassion were positively correlated, and each in turn were inversely correlated with negative emotional states and self-criticism. Negative emotional states correlated positively to self-criticism. Self-compassion and/or self-criticism moderated ten relationships between various sub-domains of quality of life and negative emotions. Psychological interventions that increase self-compassion may be beneficial for enhancing mental health and quality of life for adults with CF.
BackgroundPeople with chronic health conditions use social media to share experiences and seek advice from peers. Similarly healthcare organisations are using these tools to engage and communicate with patients. The aim of this study was to investigate the opinions of health care professionals on the use, motives and impact of social media used by patients and staff in UK CF centres.MethodsMembers of the Leeds adult CF MDT developed an online survey with 18 core questions relating to social media. The survey was sent to the clinical lead of each CF centre in the UK. The lead was asked to complete the survey and to pass it on to key members of their team to complete. Mixed methods were used with categorical, Likert and free text options.Results66 respondents from 9 professional groups and 19 centres across the UK completed the questionnaire. 16/44 professionals had never used social media and 35/60 reported that their centre had no social media presence. There was belief that social media was having a negative impact on certain aspects of care including spreading inappropriate gossip and in some cases bullying. Only 30.2% of respondents felt social media had a positive impact at their centre in contrast to 73.3% of responders who felt social media had been used in a negative way. Verbal communication, directing individuals to use departmental social media channels and communication of acceptable behaviour to all patients via a website or newsletter were methods shared to deter negative content. Despite their negative experiences many felt social media had the potential to be a positive experience in areas such as communication with patients, education, adherence, peer support, amongst others.ConclusionNegative experiences involving social media use by patients predominate. Different methods to tackle these problems have been adopted. Sharing our experiences and being alert to such problems should help minimise distress in the future. Many potential areas of positive use exist and should be exploited.
Pseudo-Bartter syndrome (PBS) is characterised by hypokalaemic, hyponatraemic and hypochloraemic metabolic alkalosis in the absence of renal tubules pathology; it is a well-recognised complication of cystic fibrosis (CF), in the context of dehydration and acute illness [1–7].
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.