Implementing a resuscitation policy for patients at the end of life in an acute hospital setting: qualitative study

Objective : To explore attitudes and experiences of doctors and nurses regarding cardiopulmonary resuscitation for patients with end stage illness in an acute hospital. Design : Qualitative study; thematic analysis of two audio-taped focus groups and four semi-structured interviews. Setting : Acute district hospital, Northern Ireland. Participants : Seven nurses and nine doctors; varying nationality, gender and years of professional experience; involved in cardiopulmonary resuscitation decision-making. Results : Participants reported different interpretations of resuscitation policy and of what do not attempt to resuscitate (DNAR) decisions meant in relation to practical care for patients. This confusion in translating policy into practice contributed to communication difficulties in initiating, documenting and implementing cardiopulmonary resuscitation decisions. Participants were aware of how clinical conditions could change and reported uncertainty in determining end stage illness; they expressed fears of potential consequences of DNAR decisions for patients' care. The more disease-centred approach of doctors to patients' management, compared to nurses' more patient-centred approach, contributed to inter-professional conflict within teams. Doctors identified training needs in applying resuscitation policy and ethical principles in `real life' and nurses identified a need for ongoing professional support, which was perceived as being less available to junior doctors. Personal relationships between staff and patients, cultural reluctance to address sensitive issues and local community expectations of relatives being involved in decisions added to policy implementation difficulties. Conclusions : The findings indicate a need for ongoing staff support and training in applying resuscitation policy to decisions for patients with end stage illness in an acute hospital. They support suggestions that reviews of local resuscitation policy and of national guidelines should be undertaken with openness and honesty regarding the goals, opportunities and difficulties involved in trying to deliver good end of life care in local settings. Palliative Medicine 2007; 21 : 305—312 Key Words: do not attempt resuscitation (DNAR) • end stage illness • inter-professional • policy • resuscitation decisions

‘Ghosts in the Head and Ghost Towns in the Field: Ethnography and the Experience of Presence and Absence’

This article is about an anthropologist coming to terms with the field and fieldwork. In 1995, I left – was evacuated from – my fieldsite as a volcanic eruption started just as my period of fieldwork drew to a close. These eruptions dramatically and instantaneously altered life on the island of Montserrat, a British colony in the Caribbean. While Montserrat the land, and Montserratians the people, migrated and moved on with their lives, Montserrat and Montserratians were preserved in my mind and in my anthropological writings as from “back home.” Revisiting Montserrat several years into the volcano crisis, I drove through the villages and roads leading to the former capital of the island, where I had worked from. My route to this modern-day Pompeii threw up a stark contrast between absence and presence, the imagined past and the experienced present. This is understood, in part, by examining the literary work of two other travelers through Montserrat, Henry Coleridge and Pete McCarthy, both of whom have a very different experience of the place and the people.

‘Care just changes your life’: Factors impacting on the mental health of children and young people in care in Northern Ireland.

This paper represents one element of a research project carried out into the mental health needs of children and young people with experiences of care in Northern Ireland. Focusing exclusively on qualitative data collected from 51 young people in care and aftercare, it discusses in the first instance how the challenges and difficulties faced by young people can manifest themselves in feelings and behaviours that may exemplify poor mental well-being. In doing so it provides an understanding of mental health in the context of these young people’s lives. Through offering a more detailed account of some of the specific issues that put these young people at increased risk, it highlights areas for further work and consideration as a means of protecting them against these risks. These include: dealing with experiences prior to care; easing and ‘‘normalising’’ the experience of living in care; and enhancing ‘‘safety nets’’ after care. A key objective of the research is to inform policy and practice through the accounts of children and young people. It is argued that more work needs to be done to find creative ways of enhancing the day-to-day experiences of young people while in care and when leaving care.

The immediate Life support course: implementation into an undergraduate nursing programme

This paper outlines how the immediate life support (ILS) course was incorporated into an undergraduate-nursing curriculum in a university in Northern Ireland. It also reports on how the students perceived the impact of this course on their clinical practice. The aim was to develop the student’s ability to recognise the acutely ill patient and to determine the relevance of this to clinical practice. Prior to this the ILS course was only available to qualified nurses and this paper reports on the first time students were provided with an ILS course in an undergraduate setting. The ILS course was delivered to 89 third year nursing students (Adult Branch) and comprised one full teaching day per week over two weeks. Recognised Advanced Life Support (ALS) instructors, in keeping with the United Kingdom Resuscitation Council guidelines, taught the students. Participants completed a 17 item questionnaire which comprised an open-ended section for student comment. Questionnaire data was analysed descriptively using SSPSS version 15.0. Open-ended responses from the questionnaire data was analysed by content and thematic analysis. Results Student feedback reported that the ILS course helped them understand what constituted the acutely ill patient and the role of the nurse in managing a deteriorating situation. Students also reported that they valued the experience as highlighting gaps in their knowledge Conclusion. The inclusion of the ILS course provides students with necessary skills to assess and manage the deteriorating patient. In addition the data from this study suggest the ILS course should be delivered in an inter-professional setting – i.e taught jointly with medical students. References: Department of Health & Quality Assurance Agency (2006). Department of Health Phase 2 benchmarking project – final report. Gloucester: Department of Health, London and Quality Assurance Agency for Higher Education

Families with multiple problems: Some challenges in identifying and providing services to those experiencing adversities across the life course

Summary A concern amongst policy makers to identify high cost and low productivity populations has created a new interest in identifying those who experience adversities across the life-course. This paper outlines the development of conceptual understandings of families whose children experience multiple adversities and links this with later poor outcomes in adult life and examines some of the research challenges in establishing such linkages. Findings It is argued that current thinking with regard to these issues reflects historical domains within which services to children and to adults are located. The challenge to domain thinking is both horizontal and vertical. Policy being required to address the horizontal axis by co-ordinating planned approaches to multiple needs across services. And policy being necessary to address the vertical cleavage between children’s and adult services in ways which join up services across the life path; conceptually and practically acknowledging the links between child and adult experiences. Application Such policy developments will inevitably require social work to develop alternative paradigms for understanding the needs of children and adults and designing services to effectively meet these.

To what extent do children with cerebral palsy participate in everyday life situations?

The aims of the study are to describe participation of children with cerebral palsy in everyday life situations, to investigate the relationship between participation (primary outcome variable) with child and parent characteristics (independent variables) and to compare the frequency of participation (secondary outcome variable) of children with cerebral palsy with children without disabilities. A cross-sectional survey of parents of children with cerebral palsy in Northern Ireland was undertaken in families’ homes using standard questionnaires. Children with cerebral palsy born between 31/8/1991 and 1/4/1997 were identified from a case register of people with the condition. A total of 102 parents opted in (51% response rate). Questionnaires included the Life Habits Questionnaire (Life-H) to measure difficulties in participation and The Frequency of Participation Questionnaire (FPQ), to measure frequency of participation with comparative data for children without disability. Overall, children with cerebral palsy participated less often than their non-disabled peers across a number of lifestyle and cultural pursuits. Among the 102 children with cerebral palsy, participation in ‘relationships’ was the least disrupted area of everyday life and aspects of ‘school’, ‘personal care’ and ‘mobility’ were the most disrupted. Children with cerebral palsy and severe co-impairments were significantly less likely to experience higher levels of participation in most areas of everyday life when compared to children with cerebral palsy and no severe co-impairments. Child physical and psychological well-being did not influence participation although higher parenting stress was significantly related to lower child participation in ‘community activities’. Participation is an important health outcome for children with cerebral palsy and should be incorporated in routine clinical practice. Professionals have a role to play both at the level of addressing individual child and family needs as well as influencing legislation and policy to ensure improved access to services and local communities.

The experience of individuals with renal failure participating in home haemodialysis: An interpretative phenomenological analysis.

This study explored the experience of individuals with renal failure undertaking home haemodialysis (HHD). Semi-structured interviews were conducted with six participants who were active HHD users in a UK region. Participants’ accounts were transcribed verbatim and analysed using an interpretative phenomenological approach. Three main themes were identified: (1) embracing treatment and lifestyle freedom and flexibility; (2) re-establishing a sense of self and preferred self-identity; and (3) integrating aspects of active engagement and aspects of supported, life-sustaining dependence. A ‘good fit’ between the HHD user (an independent, self-determined health participant) and the healthcare provision (personalized, enabling) is proposed.

Work-life Conflict and Social Inequality in Western Europe

Recent debates on time-use suggest that there is an inverse relationship between time poverty and income poverty (Aguiar and Hurst in Q J Econ C(3):969-1006, 2007), with Hammermesh and Lee (Rev Econ Stat 89(2):374-383, 2007) suggesting much time poverty is 'yuppie kvetch' or 'complaining'. Gershuny (Soc Res Int Q Soc Sci 72(2):287-314, 2005) argues that busyness is the 'badge of honour': being busy is now a positive, privileged position and it is high status people who work long hours and feel busy. Is this also true of work-life conflict? This paper explores the relationship between work-life tension and social inequality, as measured by social class, drawing on evidence from the European Social Survey. To what extent is work-life conflict a problem of the (comparatively) rich and privileged professional/managerial classes, and is this true across European countries? The countries selected offer a range of institutional and policy configurations to maximise variation. Using regression modelling of an index of subjective work-life conflict, we find that in all the countries under study, work-life conflict is higher among professionals than non-professionals. Part of this is explained by the fact that professionals work longer hours and experience more work pressure than other social classes, though the effect remains even after accounting for these factors. While levels of work-life conflict vary across the countries studied, country variation in class differences is modest. We consider other explanations of why professionals report higher work-life conflict and the implications of our findings for debates on social inequality.

Acquired deafness: A multi-dimensional experience

The aim of this study was to investigate the subjective experience of acquired deafness using quantitative (questionnaire) and qualitative (interview) methods. This paper presents findings from the questionnaire data. Eighty-seven people (of whom 38 had acquired a profound loss) participated in the study. The questionnaire contained items designed to examine both audiological and non-audiological aspects of deafened people's experiences. It also sought to measure the extent to which those aspects affect their quality of life. The questionnaire included three variables (i.e. reported frequency and impact of depression, and overall effect of deafness on one's life) as broad indicators of adjustment. Seventy-three respondents (including all but one of the profound group) completed the questionnaire. Factor analysis of the questionnaire data identified six major themes (with variance >10%) underlying the personal experience of acquired deafness. Three themes-communicative deprivation, restriction, and malinteraction by hearing people-dealt with observable aspects of respondents' experience. Multiple regression found that these factor themes associated with biomedical variables. The remaining three themes dealt with less tangible aspects of the deafness experience. These themes-feelings of distress in interaction, feelings of abandonment and benefit from positive experiences-did not associate with biomedical variables. Finally, multiple regression indicates that respondents' factor scores predict the impact of deafness at least as strongly as their audiological and social characteristics.

Quality of life and healthcare utilisation in cystic fibrosis:A multicentre UK study

The aim of our study was to discover the health status and healthcare utilisation associated with pulmonary exacerbations in cystic fibrosis (CF) and chronic Pseudomonas aeruginosa infection.

Patients with CF from five UK CF centres attended two visits, 8–12 weeks apart. They were classified at visit 1 as being in one of the three health states: no current pulmonary exacerbation; “mild” (no hospitalisation) pulmonary exacerbation; and “severe” (hospitalisation) pulmonary exacerbation. All patients completed the Cystic Fibrosis Questionnaire-Revised (CFQ-R) and EuroQol (EQ-5D) and a clinical form, and forced expiratory volume in 1 s (FEV1) was measured at visits 1 and 2. Annual healthcare utilisation data were collected.

94 patients of mean±sd age 28.5±8.2 yrs and FEV1 58.7±26.8% were recruited. 60 patients had no pulmonary exacerbation, 15 had a mild and 19 had a severe pulmonary exacerbation at visit 1. EQ-5D and CFQ-R data showed that the worse the exacerbation, the poorer the health-related quality of life (HRQoL). There were strong relationships between the CFQ-R and EQ-5D domain scores. The mean rate of pulmonary exacerbations per patient per year was 3.6 (1.5 in hospital and 2.2 at home). The mean length of stay per hospital pulmonary exacerbation was 9 days.

As exacerbation status worsens, patients experience worse HRQoL. There is a significant healthcare burden associated with treatment of pulmonary exacerbation and long-term prophylaxis.

Quality of life in men receiving radiotherapy and neo-adjuvant androgen deprivation for prostate cancer:Results from a prospective longitudinal study

Aim. To report a study measuring the quality of life and side effects in men receiving radiotherapy and hormone ablation for prostate cancer up to 1year after treatment. Background. Prostate cancer incidence is increasing with the result that more men are living longer with the disease and the side effects of treatment. It is important to know the effects this has on their quality of life. Design. Survey. Method. Between September 2006-September 2007, all men who were about to undergo radical conformal radiotherapy ± neo-adjuvant androgen deprivation for localized prostate cancer were invited to participate in the study; 149 men were recruited. They completed the European Organization on Research and Treatment of Cancer quality of life questionnaire C-30 and Prostate Cancer module PR25 at four time-points. Results. At 4-6weeks after radiotherapy, participants experienced the biggest relative decline in global quality of life, social, physical, and role functioning and an increase in treatment side effects. At 6months postradiotherapy the majority of men experienced an improvement in their side effects. However, a minority of men were experiencing severe side effects of radiotherapy at 1year post-treatment. Single men and men who had a low quality of life prior to radiotherapy, reported a lower quality of life at 1year after treatment in comparison to married men. Conclusion. Men with prostate cancer suffer limitations due to the symptoms they experience and disruption to their quality of life. It is essential that nurses develop and deliver follow-up care which is flexible and appropriate to the individual needs of these men. © 2012 Blackwell Publishing Ltd.

Long-term flavor recognition in humans with prenatal garlic experience

The human fetus learns about its chemosensory environment and this influences its behavior at birth and during the nursing period. This study examined whether prenatal experience could influence behavior much later in life. The dietary preference of two groups of children (8- to 9-years old) was examined. Mothers of one group had consumed garlic during pregnancy, mothers of the control group had not. Children received two tests, 1 month apart, of a meal containing two portions of potato gratin, one flavored with garlic. The total amount of potato, and the percentage of garlic flavored potato, eaten was calculated and examined separately by ANOVA for factors of prenatal exposure, the child's sex, and trial. Children prenatally exposed to garlic ate significantly more garlic flavored potato and a significantly greater overall amount of potato on trial 2, compared to controls. The results demonstrate prenatal experience may affect behavior well into childhood. © 2012 Wiley Periodicals, Inc.

ME and Julie:a study in narrative of illness experience and therapy in a Myalgic Encephalomyelitis sufferer

This article uses what Atkinson and Walmsley (1997) refer to as an ‘autobiographical account’ to explore the themes and relationships between narrative, illness experience and therapy in a Myalgic Encephalomyelitis (ME) sufferer. Julie is a chronic ME sufferer, having lived with ME for the past 12 years. Her life-story over those years, as she presents it, casts our attention to the intrinsically personal nature of her ‘illness experience’ and to her distinctively artistic therapeutic responses to her condition. Julie’s autobiographical narrative reveals how ME has penetrated both her body and her sense of self, her limbs as well as her dreams; as though it were a parasite feeding off her fight to regain health. In terms of narrative, Julie’s ME illness progresses from past to present, but never to the future which lies beyond contemplation. Despite this denial of the future, Julie does think of ME as a liminal phase which is to be coped through. As both spatial object and temporal event, Julie conceptualises her ME variously, dealing with it on a day-to-day basis, increasingly turning to landscape painting as a form of escapism which parallels her former physical outward bound activities. This personal therapy, so this article concludes, constitutes both narrative performance and narrative text (as canvas), both of which can only cautiously be independently interpreted by the (inter)viewer.

Constrained adoptive parenthood and family transition: Adopters' experience of unplanned birth family contact in adolescence

Adoption policy in the UK emphasizes its role in providing secure, permanent relationships to children in care who are unable to live with their birth families. Adoptive parents are crucial in providing this life-long, stable experience of family for these vulnerable children. This paper explores the experience of adoptive parenthood in the context of changes to adoptive kinship relationships brought about by new, unplanned contact with birth family during their child's middle adolescence. This contact was initiated via informal social networks and/or social media, with older birth siblings instrumental in negotiating renewed relationships. The contact precipitated a transition in adoptive family life resulting in emotional challenges and changes in parent/child relationships, which were experienced as additional to the normative transitions expected during adolescence. Parental concern as a dominant theme was founded in the child and birth sibling's stage of adolescence, coupled with constraints on adoptive parenthood imposed by the use of social media, by perceived professional attitudes and by parental social cognitions about the importance of birth ties. Adoptive parents' accounts are interpreted with reference to family life-cycle theory and implications are suggested for professional support of adoptive kinship relationships.

Assessing family members' satisfaction with information sharing and communication during Hospital care at the end of life

Context: Despite the fact that most deaths occur in hospital, problems remain with how patients and families experience care at the end of life when a death occurs in a hospital. Objectives: (1) assess family member satisfaction with information sharing and communication, and (2) examine how satisfaction with information sharing and communication is associated with patient factors. Methods: Using a cross-sectional survey, data were collected from family members of adult patients who died in an acute care organization. Correlation and factor analysis were conducted, and internal consistency assessed using Cronbach's alpha. Linear regression was performed to determine the relationship among patient variables and satisfaction on the Information Sharing and Communication (ISC) scale. Results: There were 529 questionnaires available for analysis. Following correlation analysis and the dropping of redundant and conceptually irrelevant items, seven items remained for factor analysis. One factor was identified, described as information sharing and communication, that explained 76.3% of the variance. The questionnaire demonstrated good content and reliability (Cronbach's alpha 0.96). Overall, family members were satisfied with information sharing and communication (mean total satisfaction score 3.9, SD 1.1). The ISC total score was significantly associated with patient gender, the number of days in hospital before death, and the hospital program where the patient died. Conclusions: The ISC scale demonstrated good content validity and reliability. The ISC scale offers acute care organizations a means to assess the quality of information sharing and communication that transpires in care at the end of life. © Copyright 2013, Mary Ann Liebert, Inc.