ItemCognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease: an online cross-sectional survey(BioMed Central, 2023-01-04) Coumoundouros, C.; Farrand, P.; Hamilton, A.; von Essen, L.; Sanderman, R.; Woodford, J.BACKGROUND: Informal caregivers (i.e. family and friends) provide essential support to people with chronic kidney disease (CKD). Many informal caregivers experience mental health problems such as anxiety and depression due to the caregiving role, and commonly have unmet psychological support needs. One potential solution is cognitive behavioural therapy (CBT) self-help interventions that are less reliant on extensive involvement of healthcare professionals, which may increase access. Within the intervention development phase of the MRC framework, the study's primary objective was to examine informal caregivers' self-help intervention preferences (e.g. delivery format, content). Secondary objectives were to describe the informal caregiver's situation (e.g. type of care activities) and mental health (symptoms of depression, anxiety, and stress). METHODS: An online cross-sectional survey conducted in the United Kingdom. Informal caregivers of adults living with CKD were recruited via social media, websites, newsletters, magazine articles, a podcast episode, and paid Facebook advertisements. The survey examined: informal caregiver characteristics; care recipient characteristics; self-help intervention preferences; and informal caregiver's mental health using the DASS-21. Data were analysed using descriptive statistics. RESULTS: Sixty-five informal caregivers participated. The majority (85%) were female, caring for a male (77%) spouse/partner (74%). Responses indicated 58% of informal caregivers were experiencing at least mild depression. In total, 48% indicated they were likely to use a CBT self-help intervention, preferring an intervention provided via internet (e.g. website) (64%), workbook (56%), or individually in-person (54%). Regarding content, interventions should cover a wide range of topics including living with CKD, support services, informal caregiver's physical health, and diet. Overall, 48% reported a preference for a supported intervention, with support delivered in-person or via email by a trained professional at a community organisation. CONCLUSIONS: Results suggest CBT self-help interventions may be an acceptable way to provide psychological support to informal caregivers, however the study is limited by the small sample size. A wide range of intervention preferences were identified indicating a need to tailor intervention content and delivery to enhance acceptability and engagement. Results will inform development of a CBT self-help intervention for informal caregivers of people with CKD. ItemMolecular Characterization and Management of Congenital Hyperinsulinism: A Tertiary Centre Experience(Springer, 2022-01-05) Sharma, R.; Roy, K.; Satapathy, A. K.; Kumar, A.; Nanda, P. M.; Damle, N.; Houghton, J. A. L.; Flanagan, S. E.; Radha, V.; Mohan, V.; Jain, V.BACKGROUND: There is limited data from India regarding medical management of congenital hyperinsulinism (CHI). OBJECTIVE: To study the molecular diagnosis, medical management and outcomes of children with CHI. STUDY DESIGN: Ambispective. PARTICIPANTS: Children with CHI admitted in from December, 2011 till March, 2020 at a tertiary care referral hospital. OUTCOMES: Clinical and genetic profile, treatment, and response. RESULTS: 42 children with a median age of 3 days (range 1 day to 6 years) were enrolled, of which 23 (54.7%) were diazoxide-responsive. Mutations were identified in 28 out of 41 (68.2%) patients. The commonest gene affected was ABCC8 in 22 patients. The pathogenic variant c.331G>A in ABCC8 gene was identified in 6 unrelated cases from one community. Good response to daily octreotide was seen in 13 of the 19 (68.4%) diazoxide-unresponsive patients. Monthly long-acting octreotide was initiated and daily octreotide could be stopped or tapered in 9 patients. Sirolimus was tried with variable response in 6 patients but was discontinued in 5 due to adverse effects. Four patients had focal CHI, of which one underwent partial pancreatic resection. The disease severity reduced with age and neurodevelopment was good in the patients with identifiable genetic defects who were optimally managed. CONCLUSIONS: Medical management of CHI is effective, if compliance can be ensured, with good quality of life and neurological outcomes. ItemThe contribution of frailty, cognition, activity of daily life and comorbidities on outcome in acutely admitted patients over 80 years in European ICUs: The VIP2 Study(Springer, 2020-01) Boulanger, CarolePremorbid conditions affect prognosis of acutely-ill aged patients. Several lines of evidence suggest geriatric syndromes need to be assessed but little is known on their relative effect on the 30-day survival after ICU admission. The primary aim of this study was to describe the prevalence of frailty, cognition decline and activity of daily life in addition to the presence of comorbidity and polypharmacy and to assess their influence on 30-day survival. ItemInternational critical care nursing considerations and quality indicators for the 2017 surviving sepsis campaign guidelines(Springer, 2019-11) Boulanger, Carole Item"They've walked the walk": a systematic review of quantitative and qualitative evidence for parent-to-parent support for parents of babies in neonatal care(Elsevier, 2019-04-18) Wakely, Leanna; Prosser, SusanThe aim of this systematic review was to explore the effects and experiences of parent-to-parent support in neonatal intensive care from the perspectives of those giving, receiving, or implementing support. Electronic database searches (14 databases; February 2018) were supplemented with forward and backward citation chasing. Study selection, data extraction and quality appraisal were performed independently by two reviewers. Fourteen studies (6 quantitative and 8 qualitative) met our inclusion criteria. Four major themes were identified in the qualitative literature: ‘trust’, ‘hope’, ‘information’, and ‘connecting’. Quantitative studies showed parent-to-parent support increased perceptions of support, reduced maternal stress, and increased mothers' confidence in the ability to care for their baby. Whilst the rich qualitative evidence suggested mostly positive experiences of parent-to-parent support from all perspectives, robust trial evidence was lacking. Furthermore, differences in models for implementing parent-to-parent support provided limited opportunities to develop recommendations to guide best practice. The protocol for this study was registered on PROSPERO, registration number CRD42018090569.