Does the Child Health Computing System adequately identify children with cerebral palsy?

Background This paper assesses the usefulness of the Child Health Computing System as a source of information about children with cerebral palsy.

Methods A comparative survey of information held on the Child Health Computing System (CHCS) and the Northern Ireland Cerebral Palsy Register (NICPR) in one Health and Social Services Board in Northern Ireland was carried out. The sample comprised children with cerebral palsy aged 5–9 years.

Results Of the 135 cases recorded on the NICPR, 47 per cent were not found on the CHCS; the majority of these children had no computer record of any medical diagnosis. Of the 82 cases recorded on the CHCS, 10(12 per cent) were not found on the NICPR; five of these cases (6 per cent) were found on follow–up not to have CP.

Conclusions Unless improvements are made in case ascertainment, case validation and recording activities, the evidence suggests that the CHCS will not be able to provide the same quality of information for needs assessment and surveillance of very low birthweight infants in relation to cerebral palsy as is provided by a specialist case register.

Holding eternity in an hour: A practical exploration of the arts in the health care of older people with dementia

This project involved creative artists working with older people with dementia and staff from two Belfast Health and Social Care Trust supported housing centres in a mixed programme of dance, painting, music and drama which culminated in an open workshop with relatives and friends of the tenants. The study steered away from traditional medical models of art/music/dance therapy where the participant is perceived as a ‘patient’ in favour of identifying the participant as a ‘student’ who avails of a life-long learning experience. A key premise was that access to the arts is a human right, especially in the context of advancing age and cognitive impairment. . According to one the tenants of Mullan Mews, the project served to ‘awaken - or reawaken - folk with dementia to the endless vista of possibility already in their lives if they will only look for it’. A phenomenographic analysis of video data generated by the project emphasises the importance of the individual experiences of participants in the programme. The evidence from these storylines gained strength from the development of a documentary-style film text that has proved successful in capturing and translating the live experience of the project participants into a supportive text that goes beyond the written word.

Investigating the efficiency of fitting Coxian phase-type distributions to health care data

Coxian phase-type distributions are becoming a popular means of representing survival times within a health care environment. They are favoured as they show a distribution as a system of phases and can allow for an easy visual representation of the rate of flow of patients through a system. Difficulties arise, however, in determining the parameter estimates of the Coxian phase-type distribution. This paper examines ways of making the fitting of the Coxian phase-type distribution less cumbersome by outlining different software packages and algorithms available to perform the fit and assessing their capabilities through a number of performance measures. The performance measures rate each of the methods and help in identifying the more efficient. Conclusions drawn from these performance measures suggest SAS to be the most robust package. It has a high rate of convergence in each of the four example model fits considered, short computational times, detailed output, convergence criteria options, along with a succinct ability to switch between different algorithms.

Moral distress experienced by health care professionals who provide home-based palliative care

Health care providers regularly encounter situations of moral conflict and distress in their practice. Moral distress may result in unfavorable outcomes for both health care providers and those in their care. The purpose of this study was to examine the experience of moral distress from a broad range of health care occupations that provide home-based palliative care as the initial step of addressing the issue. A critical incident approach was used in qualitative interviews to elicit the experiences on moral distress from 18 health care providers drawn from five home visiting organizations in south central Ontario, Canada. Most participants described at least two critical incidents in their interview generating a total of 47 critical incidents. Analyses of the critical incidents revealed 11 issues that triggered moral distress which clustered into three themes, (a) the role of informal caregivers, b) challenging clinical situations and (c) service delivery issues. The findings suggest that the training and practice environments for health care providers need to be designed to recognize the moral challenges related to day-to-day practice.