The challenges of caring for children who require complex medical care at home: 'The go between for everyone is the parent and as the parent that's an awful lot of responsibility'.

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.

Improving communication at handover and transfer reduces retained swabs in maternity services.

OBJECTIVE: To reduce the incidence of retained vaginal swabs and near misses. STUDY DESIGN: A review of previous retained swab incidents and near misses in a large maternity unit identified handovers and transfers as a key point of vulnerability. Interventions were introduced to improve communication at handover from the delivery suite to theatre and from theatre to the high dependency unit. Process data was collected to monitor compliance. The outcome measures were the incidence of retained swab never events and the incidence of near misses. Chi-squared analysis was used to test the significance of the results. RESULTS: For transfers from delivery suite to theatre, verbal handover significantly increased from 28.8% to 75.6% (p<0.0001), and written handover significantly increased from 4.4% to 62.9% (p<0.0001). There were 291 transfers to theatre post-intervention: in 88 (30.2%) of these transfers a vaginal swab was already in situ. In 70/88 (79.5%) of cases the presence of the swab was communicated to theatre staff in three ways (verbally, written and transfer of opened swab packets) according to the new policy. In the post-intervention period there were 56 women transferred from theatre to the high-dependency unit with a vaginal pack in situ: 52 (92.9%) of these women had a sticker in place serving as a constant reminder of the presence of the vaginal pack to staff. Following a baseline of four near misses in two months, there has been only one near miss in the 15 months since the interventions were implemented, (33.3% vs. 1.1%, p<0.0001). There have been no retained swab incidents since the project commenced. CONCLUSIONS: Simple interventions to improve communication at handover and transfer can reduce the incidence of retained vaginal swabs and near misses. Further work is needed to raise the profile of swab counting in maternity settings: swab counting needs to be the responsibility of all disciplines, not just the responsibility of theatre staff.

Response Inconsistency of Patient-Reported Symptoms as a Predictor of Discrepancy Between Patient and Clinician-Reported Depression Severity.

The aim of this study was to assess the extent to which discrepancy between self-reported and clinician-rated severity of depression are due to inconsistent self-reports. Response inconsistency threatens the validity of the test score. We used data from a large sample of outpatients ( N = 5,959) who completed the self-report Beck Depression Inventory-II (BDI-II) and the clinician-rated Montgomery-Åsberg Depression Rating Scale (MADRS). We used item response theory based person-fit analysis to quantify the inconsistency of the self-report item scores. Inconsistency was weakly positively related to patient-clinician discrepancy (i.e., higher BDI-II scores relative to MADRS scores). The mediating effect of response inconsistency in the relationship between discrepancy and demographic (e.g., ethnic origin) and clinical variables (e.g., cognitive problems) was negligible. The small direct and mediating effects of response inconsistency suggest that inaccurate patient self-reports are not a major cause of patient-clinician discrepancy in outpatient samples. Future research should investigate the role of clinician biases in explaining clinician-patient discrepancy.