No second chance: the experiences of junior neonatal nurses in providing end-of-life care for babies and families in the NNU

Background

An infant’s death is acutely stressful for parents and professionals. Little is known about junior nurses’ experiences providing end-of-life care in Neonatal Units (NNU).

Objectives

To better understand junior nurses’ experiences providing end-of-life care in NNU, the study explored the challenges and opportunities inherent in their practice relating to providing such care to babies and their families.

Methods

Neonatal nurses (n=12) with less than 3 years’ experience who were undergoing a neonatal education programme participated. Two focus groups were convened each with 6 nurses. The Ethics Committee at the relevant University approved the study. Nominal Group Technique (NGT) was used in the focus groups to build consensus around the challenges faced by junior nurses, alongside suggested developments in improving future care provision. Primary analysis involved successive rounds of ranking and decision making whilst secondary analysis involved thematic analysis.

Results

The study identified the pressures these nurses felt in having only one chance to ‘get it right’ for the infants and their families. They perceived the need for further ‘education and training’ highlighting that improved education provision would include both additional courses and internal training sessions. Greater ‘support’ from mentors themselves more experienced in this aspect of care within the NNU was identified as important in addressing issues around confidence building and skill development.

Conclusions

The results highlight junior nurses’ need for specific education and mentorship around end-of-life care for babies. This presentation will outline the implications for practice, education and further research.

An overview of waste crime, its characteristics, and the vulnerability of the EU waste sector

While waste is increasingly viewed as a resource to be globally traded, increased regulatory control on waste across Europe has created the conditions where waste crime now operates alongside a legitimate waste sector. Waste crime,is an environmental crime and a form of white-collar crime, which exploits the physical characteristics of waste, the complexity of the collection and downstream infrastructure, and the market opportunities for profit. This paper highlights some of the factors which make the waste sector vulnerable to waste crime. These factors include new legislation and its weak regulatory enforcement, the economics of waste treatment, where legal and safe treatment of waste can be more expensive than illegal operations, the complexity of the waste sector and the different actors who can have some involvement, directly or indirectly, in the movement of illegal wastes, and finally that waste can be hidden or disguised and creates an opportunity for illegal businesses to operate alongside legitimate waste operators. The study also considers waste crime from the perspective of particular waste streams that are often associated with illegal shipment or through illegal treatment and disposal. For each, the nature of the crime which occurs is shown to differ, but for each, vulnerabilities to waste crime are evident. The paper also describes some approaches which can be adopted by regulators and those involved in developing new legislation for identifying where opportunities for waste crime occurs and how to prevent it.

PAlliative Care in chronic Kidney diSease: the PACKS study—quality of life, decision making, costs and impact on carers in people managed without dialysis

BACKGROUND: The number of patients with advanced chronic kidney disease opting for conservative management rather than dialysis is unknown but likely to be growing as increasingly frail patients with advanced renal disease present to renal services. Conservative kidney management includes ongoing medical input and support from a multidisciplinary team. There is limited evidence concerning patient and carer experience of this choice. This study will explore quality of life, symptoms, cognition, frailty, performance decision making, costs and impact on carers in people with advanced chronic kidney disease managed without dialysis and is funded by the National Institute of Health Research in the UK.

METHODS: In this prospective, multicentre, longitudinal study, patients will be recruited in the UK, by renal research nurses, once they have made the decision not to embark on dialysis. Carers will be asked to 'opt-in' with consent from patients. The approach includes longitudinal quantitative surveys of quality of life, symptoms, decision making and costs for patients and quality of life and costs for carers, with questionnaires administered quarterly over 12 months. Additionally, the decision making process will be explored via qualitative interviews with renal physicians/clinical nurse specialists.

DISCUSSION: The study is designed to capture patient and carer profiles when conservative kidney management is implemented, and understand trajectories of care-receiving and care-giving with the aim of optimising palliative care for this population. It will explore the interactions that lead to clinical care decisions and the impact of these decisions on informal carers with the intention of improving clinical outcomes for patients and the experiences of care givers.

Response shift in the assessment of quality of life among people attending cardiac rehabilitation

Objectives: To examine whether any response shift in quality of life assessment over the course of a cardiac rehabilitation programme could be explained by changes in individuals’ internal standards (recalibration), values (reprioritization) and/or conceptualization of quality of life and the extent to which any response shift could be explained by health locus of control, optimism and coping strategy. Design: Longitudinal survey design. Methods: The SEIQoL-DW was administered at the beginning and end of a cardiac rehabilitation programme. At the end of the programme, the SEIQoL-DW then-test was also administered to measure response shift. A total of 57 participants completed these measures and other measures to assess health locus of control, optimism and coping. Results: Response shift effects were observed in this population mainly due to recalibration. When response shift was incorporated into the analysis of QoL a larger treatment effect was observed. Active coping as a mechanism in the response shift model was found to have a significant positive correlation with response shift. Conclusion: This study showed that response shift occurs during cardiac rehabilitation. The occurrence of response shift in QoL ratings over time for this population could have implications for the estimation of the effectiveness of the intervention.

Lung stereotactic body radiation therapy (SBRT) delivered over 4 or 11days: A comparison of acute toxicity and quality of life.

Abstract
PURPOSE:
The optimal duration over which lung SBRT should be delivered is unknown. We conducted a randomized pilot study in patients treated with four fractions of lung SBRT delivered over 4 or over 11days.
METHODS:
Patients with a peripheral solitary lung tumor (NSCLC or pulmonary metastasis) ?5cm were eligible. For NSCLC lung tumors ?3cm, a dose of 48Gy in 4 fractions was used, otherwise 52Gy in 4 fractions was delivered. Patients were randomized to receive treatment over 4 consecutive days or over 11days. The primary end-point was acute grade ?2 toxicity. Secondary end-points included quality of life (QOL) assessed using the EORTC QLQ-C30 and QLQ-LC13 questionnaires.
RESULTS:
Fifty four patients were enrolled. More patients in the 11day group had respiratory symptoms at baseline. 55.6% patients treated over 4days and 33.3% of patients treated over 11days experienced acute grade ?2 toxicity (p=0.085). Dyspnea, fatigue and coughing domains were worse in the 11day group at baseline. At 1 and 4months, more patients in the 4day group experienced a clinically meaningful worsening in the dyspnea QOL domain compared to the 11day group (44.5% vs 15.4%, p=0.02; 38.5% vs 12.0%, p=0.03, respectively). However, raw QOL scores were not different at these time-points between treatment groups.
CONCLUSIONS:
Grade 2 or higher acute toxicity was more common in the 4day group, approaching statistical significance. More patients treated on 4 consecutive days reported a clinically meaningful increase in dyspnea, although interpretation of these results is challenging due to baseline imbalance between treatment groups. Larger studies are required to validate these results.

Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis

Objective: To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients’ homes.Design: Pooled analysis of a retrospective cohort study.Setting: Ontario, Canada.Participants: 3109 patients who received care from specialist palliative care teams in 2009-11 (exposed) matched by propensity score to 3109 patients who received usual care (unexposed).Intervention: The palliative care teams studied served different geographies and varied in team composition and size but had the same core team members and role: a core group of palliative care physicians, nurses, and family physicians who provide integrated palliative care to patients in their homes. The teams’ role was to manage symptoms, provide education and care, coordinate services, and be available without interruption regardless of time or day.Main outcome measures: Patients (a) being in hospital in the last two weeks of life; (b) having an emergency department visit in the last two weeks of life; or (c) dying in hospital.Results: In both exposed and unexposed groups, about 80% had cancer and 78% received end of life homecare services for the same average duration. Across all palliative care teams, 970 (31.2%) of the exposed group were in hospital and 896 (28.9%) had an emergency department visit in the last two weeks of life respectively, compared with 1219 (39.3%) and 1070 (34.5%) of the unexposed group (P<0.001). The pooled relative risks of being in hospital and having an emergency department visit in late life comparing exposed versus unexposed were 0.68 (95% confidence interval 0.61 to 0.76) and 0.77 (0.69 to 0.86) respectively. Fewer exposed than unexposed patients died in hospital (503 (16.2%) v 887 (28.6%), P<0.001), and the pooled relative risk of dying in hospital was 0.46 (0.40 to 0.52).Conclusions: Community based specialist palliative care teams, despite variation in team composition and geographies, were effective at reducing acute care use and hospital deaths at the end of life.

A well-to-wheel analysis of electric vehicles in the all-island Single Electricity Market

The European Union has set a target for 10% renewable energy in transport by 2020 to be met using biofuels and electric vehicles. In the case of biofuels, the biofuel must achieve greenhouse gas savings of 35% relative to the fossil fuel replaced. For biofuels, greenhouse gas savings can be calculated using life cycle analysis or the European Union default values. In contrast, all electricity used in transport is considered to be the same, regardless of the source or the type of electric vehicle. However, the choice of the electric vehicle and electricity source will have a major impact on the greenhouse gas saving. In this paper the initial findings of a well-to-wheel analysis of electric vehicle deployment in Northern Ireland are presented. The key finding indicates that electric vehicles require least amount of energy per mile on a well-to-wheel basis, consume the fewest resources, even accommodating inefficient fuel production, in comparison to standard internal combustion engine and hybrid vehicles.

The validity of the MacNew Quality of Life Questionnaire in heart disease.

Background A previous review suggested that the MacNew Quality of Life Questionnaire was the most appropriate disease-specific measure of health-related quality of life among people with ischaemic heart disease. However, there is ambiguity about the allocation of items to the three factors underlying the MacNew and the factor structure has not been confirmed previously among the people in the UK. Methods The MacNew Questionnaire and the SF-36 were administered to 117 newly admitted patients to a tertiary referral centre in Northern Ireland. All patients had been diagnosed with ischaemic heart disease. Results A confirmatory factor analysis was conducted on the factor structure of the MacNew and the model was found to be an inadequate fit of the data. A quantitative and qualitative analysis of the items suggested that a five factor solution was more appropriate and this was validated by confirmatory factor analysis. This new structure also displayed strong evidence of concurrent validity when compared to the SF-36. Conclusion We recommend that researchers should submit scores obtained from items on the MacNew to secondary analyses after being grouped according to the factor structure proposed in this paper, in order to explore further the most appropriate grouping of items.

How well do elderly people complete individualised quality of life measures: an exploratory study.

This research note describes and discusses a study which investigated the feasibility of using an individualised approach to measure the quality of life (QoL) of a sample of older people who were in receipt of an early hospital discharge service. Most participants (86%) were able to identify areas of their lives which were important to them, rate their level of functioning on each of these areas and rank their life areas in order of importance. However, 39% were unable to quantify the relative importance of each area of life. Indeed, the majority (57%) of participants who were over 75 years old could not complete this “weighting” or evaluative stage. The results suggest that the phenomenological approach to measuring QoL may be employed successfully with older people but that the “weighting” system used by existing individualised QoL measures needs to be refined, especially when assessing people over 75.

Measuring the health-related quality of life of people with ischaemic heart disease.

Objectives—To inform researchers and clinicians about the most appropriate generic and disease specific measures of health related quality of life for use among people with ischaemic heart disease. Methods—MEDLINE and BIDS were searched for research papers which contained a report of at least one of the three most common generic instruments or at least one of the five disease specific instruments used with ischaemic heart disease patients. Evidence for the validity, reliability, and sensitivity of these instruments was critically appraised. Results—Of the three generic measures—the Nottingham health profile, sickness impact profile, and short form 36 (SF-36)—the SF-36 appears to offer the most reliable, valid, and sensitive assessment of quality of life. However, a few of the SF-36 subscales lack a sufficient degree of sensitivity to detect change in a patient’s clinical condition. According to the best available evidence, the quality of life after myocardial infarction questionnaire should be preferred to the Seattle angina questionnaire, the quality of life index cardiac version, the angina pectoris quality of life questionnaire, and the summary index. Overall, research on disease specific measures is sparse compared to the number of studies which have investigated generic measures. Conclusions—An assessment of the quality of life of people with ischaemic heart disease should comprise a disease specific measure in addition to a generic measure. The SF-36 and the quality of life after myocardial infarction questionnaire (version 2) are the most appropriate currently available generic and disease specific measures of health related quality of life, respectively. Further research into the measurement of health related quality of life of people with ischaemic heart disease is required in order to address the problems (such as lack of sensitivity to detect change) identified by the review.

Selecting a measure of health-related quality of life.

Quality of life is becoming recognized increasingly as an important outcome measure which needs to be considered by social workers. However, there does not appear to be a clear consensus about the definition of quality of life. In addition, social workers are likely to experience difficulties choosing and applying an appropriate instrument with which to measure quality of life because of the many available instruments purporting to assess quality of life. This paper discusses the definition of health-related quality of life and explains the main measurement properties of an instrument that must be appraised when considering whether or not an instrument is appropriate. The paper will assist social workers to make an informed choice about measures of health-related quality of life.