Conectar
Cystic fibrosis (CF) is a life-limiting autosomal recessive genetic condition. It is caused by mutations in the gene that encodes for a chloride and bicarbonate conducting transmembrane channel. X-ray velocimetry (XV) is a novel form of X-ray imaging that can generate lung ventilation data through the breathing cycle. XV technology has been validated in multiple animal models, including the β-ENaC mouse model of CF lung disease. It has since been assessed in early-phase clinical trials in adult human subjects; however, there is a paucity of data in the paediatric cohort, including in CF. The aim of this pilot study was to investigate the feasibility of performing a single-centre cohort study in paediatric patients with CF and in those with normal lungs to demonstrate the appropriateness of proceeding with further studies of XV in these cohorts.
This is a cross-sectional, single-centre, pilot study. It will recruit children aged 3–18 years to have XV lung imaging performed, as well as paired pulmonary function testing. The study will aim to recruit 20 children without CF with normal lungs and 20 children with CF. The primary outcome will be the feasibility of recruiting children and performing XV testing. Secondary outcomes will include comparisons between XV and current assessments of pulmonary function and structure.
This project has ethical approval granted by The Women’s and Children’s Hospital Human Research Ethics Committee (HREC ID 2021/HRE00396). Findings will be disseminated through peer-reviewed publication and conferences.
ACTRN12623000109606.
The objective of this study is to explore patient, relative/carer and clinician perceptions of barriers to early physical rehabilitation in intensive care units (ICUs) within an associated group of hospitals in the UK and how they can be overcome.
Qualitative study using semi-structured interviews and thematic framework analysis.
Four ICUs over three hospital sites in London, UK.
Former ICU patients or their relatives/carers with personal experience of ICU rehabilitation. ICU clinicians, including doctors, nurses, physiotherapists and occupational therapists, involved in the delivery of physical rehabilitation or decisions over its initiation.
Views and experiences on the barriers and facilitators to ICU physical rehabilitation.
Interviews were carried out with 11 former patients, 3 family members and 16 clinicians. The themes generated related to: safety and physiological concerns, patient participation and engagement, clinician experience and knowledge, teamwork, equipment and environment and risks and benefits of rehabilitation in intensive care. The overarching theme for overcoming barriers was a change in working model from ICU clinicians having separate responsibilities (a multidisciplinary approach) to one where all parties have a shared aim of providing patient-centred ICU physical rehabilitation (an interdisciplinary approach).
The results have revealed barriers that can be modified to improve rehabilitation delivery in an ICU. Interdisciplinary working could overcome many of these barriers to optimise recovery from critical illness.
To explore patient experiences of intimacy and sexuality in those living with inflammatory bowel disease.
An interpretative phenomenological study guided by van Manen's framework. Thematic analysis was conducted through interpretation and reflection on four existential domains: body, relationships, time and space.
Data were collected during 2019–2021 from 43 participants via face-to-face or telephone interviews, as well as anonymous collection of narratives submitted via Google Forms.
Four themes were identified: Sexuality as lived incompleteness was the overarching theme representing the essence of the experiences of intimacy and sexuality. This theme covered the four main themes: Otherness of the body, Interrupted connectedness, Missing out on life fullness and Fragmented openness and each corresponded to an existential domain. Intimacy and sexuality are negatively affected by inflammatory bowel disease, with impact on quality of life. Patients experienced grieving multiple losses, from body image and control, to choice of partners and future opportunities. The four domains were difficult to separate and a close inter-relationship between each domain was acknowledged.
A model was developed to draw new theoretical insights to understanding the relationship between sexual well-being and psycho-emotional distress similar to grief.
First qualitative study to explore intimacy and sexuality experiences of those living with inflammatory bowel disease. Illness impact on sexuality has negative psycho-emotional implications as a result of losing the old self and capacity to have the desired relationships/sex life. A theoretical model was developed in an attempt to illustrate the close relationship of intimacy, sexuality and psycho-emotional well-being.
Patients were involved in the study design.
FreshRSS 