Background Increasing numbers of children with complex health‐care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home. Methods We conducted a thematic analysis of eleven in‐depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life. Results We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life‐threatening), co‐ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep‐deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal. Discussion The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health‐care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.

Background Tackling malnutrition is a global health priority, helping children both survive and thrive. Acute malnutrition (wasting) in infants aged under 6 months (u6m) is often neglected. Worldwide, some 8.5 million infants u6m are affected yet recent World Health Organization malnutrition guidelines highlight numerous evidence gaps on how to best manage them. To inform future research, policy and programming, we aimed to identify risk factors associated with infant u6m wasting. Methods We did secondary data analysis of nationally representative, cross sectional Demographic and Health Surveys conducted in the last 10 years. We compared wasted infants u6m (weight-for-length <−2 z-scores) vs. non-wasted (weight-for-length ≥−2 z-score). We used simple and adjusted (for infant age, sex, socio-economic status) logistic regression to calculate odds of wasting associated with risk factors spanning three broad categories: household-related; maternal-related; infant-related. Results We analysed 16,123 infants u6m from 20 countries. Multiple risk factors were statistically associated with wasting. These included: poverty (Odds ratio, OR 1.22 (95% CI [1.01–1.48], p = 0.04)); low maternal body mass index (adjusted OR 1.53(1.29–1.80, p < 0.001); small infant size at birth (aOR 1.32(1.10–1.58, p < 0.01)); delayed start of breastfeeding (aOR 1.31(1.13–1.51, p < 0.001)); prelacteal feed (aOR 1.34(1.18–1.53, p < 0.001)); recent history of diarrhoea (aOR 1.37(1.12–1.67, p < 0.01)); mother disempowered (experiences violence; does not make decisions about health issues; does not engage with health services such as antenatal care, does not give birth in a health facility). ‘Protective’ factors associated with significantly decreased odds of infant u6m wasting included: educated mother (OR 0.64(0.54–0.76, p < 0.001)); mother in work (OR 0.82(0.72–0.94, p < 0.01)); currently breastfed (aOR 0.62(0.42–0.91, p = 0.02)), exclusively breastfed (aOR 0.84(0.73–0.97, p = 0.02). Discussion Infant u6m wasting is a complex, multifactorial problem associated with many risk factors; knowing them will help shape international and national management strategies. Whilst our observational study cannot prove causation, many factors identified are biologically plausible and/or socially important. They should be considered when assessing and managing infants u6m. Although supporting breastfeeding is core to future interventions, this alone is unlikely to be sufficient; strategies should involve multiple sectors, beyond just health and nutrition. By noting our results, future intervention studies could focus resources and maximise chances of achieving impact.

ObjectivesTo define the target population of patients who have suspicion of sepsis (SOS) and to provide a basis for assessing the burden of SOS, and the evaluation of sepsis guidelines and improvement programmes.DesignRetrospective analysis of routinely collected hospital administrative data.SettingSecondary care, eight National Health Service (NHS) Acute Trusts.ParticipantsHospital Episode Statistics data for 2013–2014 was used to identify all admissions with a primary diagnosis listed in the ‘suspicion of sepsis’ (SOS) coding set. The SOS coding set consists of all bacterial infective diagnoses.ResultsWe identified 47 475 admissions with SOS, equivalent to a rate of 17 admissions per 1000 adults in a given year. The mortality for this group was 7.2% during their acute hospital admission. Urinary tract infection was the most common diagnosis and lobar pneumonia was associated with the most deaths. A short list of 10 diagnoses can account for 85% of the deaths.ConclusionsPatients with SOS can be identified in routine administrative data. It is these patients who should be screened for sepsis and are the target of programmes to improve the detection and treatment of sepsis. The effectiveness of such programmes can be evaluated by examining the outcomes of patients with SOS.

AimsTo describe the nature and causes of patient safety incidents relating to care at home for children with enteral feeding devices.MethodsWe analysed incident data relating to paediatric nasogastric, gastrostomy or jejunostomy feeding at home from England and Wales’ National Reporting and Learning System between August 2012 and July 2017. Manual screening by two authors identified 274 incidents which met the inclusion criteria. Each report was descriptively analysed to identify the problems in the delivery of care, the contributory factors and the patient outcome.ResultsThe most common problems in care related to equipment and devices (n=98, 28%), procedures and treatments (n=86, 24%), information, training and support needs of families (n=54, 15%), feeds (n=52, 15%) and discharge from hospital (n=31, 9%). There was a clearly stated harm to the child in 52 incidents (19%). Contributory factors included staff/service availability, communication between services and the circumstances of the family carer.ConclusionsThere are increasing numbers of children who require specialist medical care at home, yet little is known about safety in this context. This study identifies a range of safety concerns relating to enteral feeding which need further investigation and action. Priorities for improvement are handovers between hospital and community services, the training of family carers, the provision and expertise of services in the community, and the availability and reliability of equipment. Incident reports capture a tiny subset of the total number of adverse events occurring, meaning the scale of problems will be greater than the numbers suggest.

Background The Partners at Care Transitions Measure (PACT-M) is a patient-reported questionnaire for evaluation of the quality and safety of care transitions from hospital to home, as experienced by older adults. PACT-M has two components; PACT-M 1 to capture the immediate post discharge period and PACT-M 2 to assess the experience of managing care at home. In this study, we aim to examine the psychometric properties, factor structure, validity and reliability of the PACT-M. Methods We administered the PACT-M over the phone and by mail, within one week post discharge with 138 participants and one month after discharge with 110 participants. We performed principal components analysis and factors were assessed for internal consistency, reliability and construct validity. Results Reliability was assessed by calculating Cronbach’s alpha for the 9-item PACT-M 1 and 8-item PACT-M 2 and exploratory factor analysis was performed to evaluate dimensionality of the scales. Principal components analysis was chosen using pair-wise deletion. Both PACT-M 1 and PACT-M 2 showed high internal consistency and good internal reliability values and conveyed unidimensional scale characteristics with high reliability scores; above 0.8. Conclusions The PACT-M has shown evidence to suggest that it is a reliable measure to capture patients’ perception of the quality of discharge arrangements and also on patients’ ability to manage their care at home one month post discharge. PACT-M 1 is a marker of patient experience of transition and PACT-M 2 of coping at home.