The experiences of palliative care health service provision for people with non-malignant respiratory disease and their caregivers: an all-Ireland study

Aim: To explore the perception of palliative care provision for people with non-malignant respiratory disease from the perspective of bereaved caregivers.

Background: It is recognized that the majority of patients diagnosed with a malignant disease will have access to palliative care provision. However, it is less clear if the same standards of palliative care are available to those with non-malignant respiratory disease in Northern Ireland and the Republic of Ireland.

Design: A qualitative study based on broad interpretivism.

Methods: This research is a PhD study funded by the Department of Education and Learning in Northern Ireland (awarded February 2011). Data collection will consist of two stages; interviews with 20 bereaved caregivers of people who have died 3–18 months previously with a diagnosis of non-malignant respiratory disease and four focus groups with healthcare professionals involved in the care of this client group. This study will be carried out at four healthcare sites across the Island of Ireland. The data will be analysed using thematic content analysis. Research Ethics committee approval was obtained (March 2012).

Discussion: This research will explore the experiences of patients with Chronic Obstructive Pulmonary Disease, Interstitial Lung Disease and Bronchiectasis and their caregivers from the perspective of the bereaved caregiver. The outcomes of this study will provide a critical first step in the development of more responsive palliative care for this client group and have important implications for future practice and policy in the palliative care provided to this client group.

Healthcare professionals’ response to cachexia in advanced cancer: A qualitative study

Purpose/Objectives: To explore healthcare professionals' experience, understanding, and perception of the needs of patients with cachexia in advanced cancer.

Research Approach: A qualitative approach based on symbolic interactionism.

Setting: A regional cancer center in a large teaching hospital in the United Kingdom.

Participants: 34 healthcare professionals who had experience providing care to patients with cachexia in advanced cancer.

Methodologic Approach: Data collection consisted of two phases: focus group and semistructured interviews. Interviews were digitally recorded and transcribed verbatim for analysis. This article reports on findings from the second phase of data collection.

Findings: Analysis revealed that professional approaches to cachexia were influenced by three overarching and interthinking themes: knowledge, culture, and resources. Healthcare professionals commonly recognized the impact of the syndrome; however, for nonpalliative healthcare professionals, a culture of avoidance and an overreliance on the biomedical model of care had considerable influence on the management of cachexia in patients with advanced cancer.

Conclusions: Cachexia management in patients with advanced cancer can be difficult and is directed by a variable combination of the influence of knowledge, culture of the clinical area, and available resources. Distinct differences exist in the management of cachexia among palliative and nonpalliative care professionals.

Interpretation: This study presented a multiprofessional perspective on the management of cachexia in patients with advanced cancer and revealed that cachexia is a complex and challenging syndrome that needs to be addressed from a holistic model of care.

Knowledge Translation: Cachexia management in patients with advanced cancer is complex and challenging and is directed by a combination of variables. An overreliance on the biomedical model of health and illness occurs in the management of cachexia in patients with advanced cancer. Cachexia needs to be addressed from a holistic model of care to reflect the multidimensional needs of patients and their families.

Electric currents and lens regeneration in the rat

We studied the process of lens regeneration in the rat following an extracapsular lens extraction preserving the anterior lens capsule and anterior lens epithelium. We assessed clinically the clarity of the newly regenerated lens, evaluated changes in the lens electrical currents following surgery and during the regeneration process and correlated these changes with findings on light microscopy. Protein analysis of the regenerated lens was also undertaken. Experiments were performed in 41 Sprague-Dawley rats, sacrificed at 0, 2, 4 and 8 weeks postoperatively. Our results showed that complete lens regeneration occurred 8 weeks postoperatively only if the anterior epithelium was preserved and the lens capsule was closed surgically. Lens electrical currents, altered following surgery, recovered in parallel with the process of regeneration of the lens. The newly regenerated lens was optically clear and biochemical analysis revealed a pattern of protein expression resembling that observed during lens development. In conclusion, complete lens regeneration occurs in the rat and it is possible that lens electrical signals, together with other cues, may play an important role in this process. © 2009 Elsevier Ltd.

Why the size structure of marine communities can require decades to recover from fishing

A dynamic food-web model of more than 1000 species was used to quantify the recovery trajectory of marine community size-structure under different hypothetical fishing regimes, using the Northeast Atlantic as an example. Size-structure was summarised by four indicators: the Large Fish Indicator (LFI), the Large Species Indicator (LSI), the biomass-weighted mean maximum length of fish species (EMBED Equation.3) and the biomass-weighted mean maturation length of fish species (EMBED Equation.3). Time-series of these indicators recorded recovery following release from fishing with various size-selectivities, intensities and durations. In model simulations, fishing-induced trophic cascades were observed to distort fish community size-structure, but these did not have a large influence on recovery level or duration as measured by the four indicators. However, simulations showed that local extinctions of large fish species increased in number with both fishing intensity and duration, and could strongly limit the recovery level. Recovery of fish community size-structure to near equilibrium frequently took multiple decades in simulations; these long transient periods suggest that management interventions for size-structure recovery may require much longer than previously thought. Our results demonstrate the need for community-level modelling to set realistic targets for management of community size-structure.

Reviewing child deaths - Learning from the American experience

Current systems for investigating child deaths in England, Wales and Northern Ireland have come under intense scrutiny in recent years and questions have been raised about the accuracy of child death investigations and resulting statistics. Research has highlighted the ways in which multidisciplinary input can contribute to investigative and review processes, a perspective which is further supported by recent UK policy developments. The experience of creating multidisciplinary child death review teams (CDRTs) in America highlights the potential benefits the introduction of a similar system might have. These benefits include improved multi-agency working and communication, more effective identification of suspicious cases, a decrease in inadequate death certification and a broader and more in-depth understanding of the causes of child deaths through the systematic collection and analysis of data. While a lack of funding, regional coordination and evaluation limit the impact of American CDRTs, the positive aspects of this process make it worthwhile, and timely, to consider how such a model might fit within our own context. Current policy developments such as the Home Office review of coroner services, the Children Bill and related Department for Education and Skills (DfES) work on developing screening groups demonstrate that strides have been made in respect of introducing a multidisciplinary process. Similarly, the development of local protocols for the investigation and/or review of child deaths in England, Wales and Northern Ireland highlights an increased focus on multidisciplinary processes. However, key issues from the American experience, such as the remit of CDRTs/screening panels, the need for national coordination and the importance of rigorous evaluation, can inform the development of a similar process in the UK. Copyright ©2005 John Wiley & Sons, Ltd.

A ten year retrospective audit of clinical psychology referrals within a paediatric CF team

Objective: This retrospective audit was undertaken to explore the nature of referrals made by the paediatric CF team to the Clinical Psychologist over a period of 10 years. The aim of the audit was to identify patterns or trends related to difficulties referred by the team.
Methods: A database consisting of all referrals received over a ten year period from 2001-2010 was created. A coding template was then created by KR and AC, which allowed for the categorisation of referrals into three main themes: Mood disturbance; CF related events; and non-CF related events. The same coding template was used to categorise referrals to the adult CF service. Descriptive statistics were used to interpret the data.
Results: Over the ten year period, 106 young people with CF were referred to psychology, representing 266 referrals. On average, a referral was made every two weeks. The most common reason for referral was for CF related events (i.e. adherence, living everyday life with CF). Referrals were found to increase with age. Both genders were equally likely to be referred, with females being re-referred most frequently, indicating increased psychological morbidity. The majority of referrals (79%) were repeat referrals, indicating that psychology input is focused upon a small number of young people but over a period of time. In a typical year (09-10), only 16% of all young people with CF were able to access psychology services. Conclusion: This audit identified patterns related to inequality of access, gender differences, and the identification of common concerns across age groups. The audit also highlighted areas where early intervention and training efforts could be targeted.

New challenges faced by carers during their child's hospital admission under segregation

Introduction
This paper presents the results of a qualitative study of CF family carers at the Belfast Paediatric CF Centre. The aim of this study was to describe the carer experience of their child’s admission to hospital under segregated care arrangements, and to highlight the meaning of segregation and cross infection from the carer perspective.

Method
Carers of children with CF who were admitted for two week IV antibiotic treatment during the study period were eligible to participate in this qualitative study. A consecutive series of eligible carers were approached in order of admission and within the time constraints of KR who was present two days each week. Recruitment of carers ended when no new themes emerged. Ten carers, 9 mothers and 1 couple, were interviewed about their experiences (mean age of child: 11.8 years; range: 1-17 years). Interpretative Phenomenological Analysis (IPA) was used to analyse and interpret the interview data.

Results and discussion
Balancing demands and dilemmas was the main contextual theme or experience of being a carer of a child with CF, and particularly so during admission to hospital. Many decisions were required every day that resulted in ‘double binds’ comprising uncertainty and stress. Three secondary themes captured the essence of carers’ experiences specifically related to segregation: managing risk and uncertainty; the burden of admission; and getting through each day. These themes will be described with examples illustrating the challenges faced by carers during their child’s hospitalisation, and the impact of segregation upon carers.

The effects of new topical treatments on management of glaucoma in Scotland:An examination of ophthalmological health care

Background: The management of glaucoma has been changed in the past decade by the introduction of new drugs. The impact of these changes on clinical care of patients was examined by examining operation and prescribing rates for glaucoma in four geographical areas of Scotland for the years 1994 to 1999. Methods: A retrospective analysis of national health statistics: primary care prescribing data, hospital derived operation rates, consultant numbers, optometrist numbers, and eye test data, expressed by estimated population at risk of glaucoma. The outcome measures were prescribing volume and cost for glaucoma medications, and operation rates, corrected for population estimated to be at risk of glaucoma (PEG), for trabeculectomy, for Scotland as a whole, and for four geographical "regions" (north east, south east, central, and south west Scotland). Results: Prescribed items per 1000 population estimated to have glaucoma (PEG) increased by 24.9% between 1994 and 1999. This was above the general increase in prescribing in Scotland (17.8%). This increase varied in the four health regions evaluated (14.3% to 31.9%). Prescribing of topical ß blockers increased little (6.4%), but there was a large increase in the use of new products (topical prostaglandins, carbonic anhydrase inhibitors, and a agonists), at the expense of miotics (47.7% fall), and older sympathomimetics. This change in prescribing pattern was accompanied by a 61.5% increase in cost (range 42.2% to 73.4% in the four regions). New drugs accounted for more than half of total glaucoma expenditure in 1999. Operation rates (corrected for PEG) fell by 45.9% (range 43.1 to 58.6%) between 1994 and 1999. Other indicators suggested increased activity in ophthalmic areas (for example, cataract operations, eye tests, numbers of optometrists and ophthalmic surgeons all increased). Within north east Scotland operation rates decreased and prescribing increased less than in other regions, both from lowest regional baseline in 1994. Conclusions: The introduction of new drug classes has had dramatic effects on the prescribing of glaucoma treatments. There has been a decline in older treatments and an increase in new agents, which has been associated with a large reduction in operation rates for glaucoma in Scotland over 6 years. Comparison of prescribing and operation data indicates regional differences in healthcare delivery for glaucoma.

A review of glaucoma treatment in Scotland 1994-2004

Objective: This study evaluated the changing trends in glaucoma management in Scotland between 1994 and 2004. Methods: A retrospective analysis of national health statistics in Scotland from 1994 to 2004. The Scottish morbidity record was used to collect information on all episodes of trabeculectomy. Data on number of prescriptions were gathered for individual drugs and also for groups of active ingredient. The population likely to have glaucoma (PLG) was calculated from estimates of prevalence in individuals aged 40 years and older, based on published epidemiological studies. The outcome measures were trabeculectomy rates, corrected for population likely to be at risk of glaucoma (PLG), and prescribing volume and cost for glaucoma medications. Results: Trabeculectomy rates have fallen by 67% from 46 per 1000 PLG in 1994 to 15.4 per 1000 PLG in 2004. Over the same time period, the population likely to be at risk of glaucoma (PLG) increased by 16.6%. The cost of prescribing has increased by 122% over 11 years compared with an increase in number of items per 1000 PLG by 27.5%. In 1994, ß-blockers accounted for 65.2% of prescribed drugs but by 2004 this had dropped to 33%. Since their introduction, the prescribing of prostaglandin analogues has increased rapidly and in 2004, they accounted for 39.4% of prescribed drugs. Conclusion: The increasing useof prostaglandin analogues has led to an increase in prescribing rates and a rapid increase in cost. At the same time, prescribing of ß-blockers has declined and trabeculectomy rates have fallen.

A literature review of end-stage renal disease and cachexia:Understanding experience to inform evidence-based healthcare

Introduction: Cachexia is a major cause of morbidity and mortality in people who have end-stage renal disease (ESRD). The majority of research into cachexia in ESRD has focused on the biological aspects of the syndrome and potential treatment modalities. While this research is necessary, it predominately focuses on the physical impact of cachexia in ESRD. The multi-dimensional psychosocial ramifications of this syndrome have been highlighted in other end-stage illness trajectories, but have not been systematically explored in persons who have ESRD. Aim: This paper discusses why this research is necessary, alongside further studies to help define the pathophysiology of this syndrome. Conclusion: The rich insightful data gained from understanding the patients' illness experience will positively contribute to the limited knowledge base available and inform future holistic patient-centred care delivery which recognises and responds to not only the biological but also the psychosocial impact of cachexia. © 2013 European Dialysis and Transplant Nurses Association/European Renal Care Association.

Population enumeration and assessing conservation status in a widespread amphibian: A case study of Rana temporaria in Ireland

Global amphibian declines are a major element of the current biodiversity crisis. Monitoring changes in the distribution and abundance of target species is a basic component in conservation decision making and requires robust and repeatable sampling. For EU member states, surveillance of designated species, including the common frog Rana temporaria, is a formal requirement of the 'EC Habitats & Species Directive'. We deployed established methods for estimating frog population density at local water bodies and extrapolated these to the national and ecoregion scale. Spawn occurred at 49.4% of water bodies and 70.1% of independent 500-m survey squares. Using spawn mat area, we estimated the number of adult breeding females and subsequently the total population assuming a sex ratio of 1:1. A negative binomial model suggested that mean frog density was 23.5 frogsha [95% confidence interval (CI) 14.9-44.0] equating to 196M frogs (95%CI 124M-367M) throughout Ireland. A total of 86% of frogs bred in drainage ditches, which were a notably common feature of the landscape. The recorded distribution of the species did not change significantly between the last Article 17 reporting period (1993-2006) and the current period (2007-2011) throughout the Republic of Ireland. Recording effort was markedly lower in Northern Ireland, which led to an apparent decline in the recorded distribution. We highlight the need to coordinate biological surveys between adjacent political jurisdictions that share a common ecoregion to avoid apparent disparities in the quality of distributional information. Power analysis suggested that a reduced sample of 40-50 survey squares is sufficient to detect a 30% decline (consistent with the International Union for Conservation of Nature Category of 'Vulnerable') at 80% power providing guidance for minimizing future survey effort. Our results provin assessments for R. temporaria and other clump-spawning amphibians. 2013 The Zoological Society of London.