No / Ambulance service demand is increasing in the United Kingdom. A common speculative view makes a link between this rise in demand, deprivation, and certain medical conditions. This study explored factors infl uencing English ambulance service demand in two areas of differing socioeconomic status. Adopting a causal comparative design, the study compared the numbers of life-threatening calls that Yorkshire Ambulance Service receives and serves in two geographical areas within the Hull and East Riding area. The area of lower socioeconomic status generated signifi cantly more life-threatening calls than the area of higher socioeconomic status; these calls often supported younger patients (mean age 59 years versus 71 years) for breathing diffi culties (29% versus 14.5%) more commonly. Tackling inequality will require a whole-systems approach, effective leadership, and recognition of the benefi ts of understanding difference. A key relationship will entail engaging with seldom heard communities.

The purpose of this study was to increase awareness and understanding of parental caregivers’ current support needs in order to provide direction in the development of a theory-based hope intervention. The intervention is intended to improve psychosocial and bereavement support for parental caregivers of children with life limiting (LLI) or life threatening illnesses (LTI). The number of parents who have children living with a LLI/LTI is increasing. The impact of these illnesses on parents is significant as they travel alongside their child and experience emotional, physical, and spiritual upheaval. Current empirical research reveals that this journey challenges parents’ understanding of life, faith, and certainty in the future. Many studies demonstrated that parents’ needs are not consistently met and parents often reported the need for psychosocial support. Hope has been found to be an important psychosocial concept for parents and has been shown to provide support when facing difficult circumstances. For this reason, the concept of hope provided the conceptual framework for this research. In order to develop a theory-based psychosocial hope intervention for parental caregivers, a large scale privately funded project that included a metasynthesis of current research, a Delphi survey, and focus groups was conducted. All three components of this project were developed by a research team of two doctorate nurse researchers, one pediatric palliative care specialist, one pediatric oncologist, one community member, and a graduate student. The study presented here is based on the Delphi survey only and serves as the graduate student’s master of nursing thesis. A Delphi survey consisting of three rounds of questions and controlled feedback to experts was employed. Sixty-eight experts were recruited including parental caregivers who have children diagnosed with LLIs or LTIs and those who care for them such as community members, nurses, social workers, and physicians. Based on Bally et al.’s (2013) grounded theory of Keeping Hope Possible, the survey focused on four subprocesses that were identified as essential for parental hope. Experts suggested strategies or activities for each subprocess. Answers were summarized and ranked in order of highest to lowest according to feasibility and effectiveness. The final round revealed a consensus and eight major themes emerged: organize basic needs; connect with others; prioritize self-care; obtain meaningful information; take things day by day; advocate for parental participation; manifest positivity; and celebrate milestones. The survey took place via email to allow easy access to experts and parents globally. This study identified needs of parents of children with LLIs or LTIs in order to develop a theory-based psychosocial hope intervention. Results have the potential to provide direction for a newly developing pediatric palliative care program in Western Canada.

The overarching aim of this thesis was to describe how family members experienced everyday life with life-threatening illness close to death, with focus on self-image and identity. The thesis comprises four papers, each with a specific aim to illuminate various aspects of the phenomenon under study. The study population consisted of 29 participants; ten family caregivers and five families, including five patients with life threatening illness and their family members. Data were based on retrospective single interviews (paper I), prospective individual, couple and group interviews with the families over six to eighteen month (papers II-III). Interpretive description approach (papers I, II, IV), narrative method (paper III) and secondary analysis (paper IV) were used to analyze data. The findings show how living close to death influences everyday life at home, at several levels (papers I-IV). From the perspective of the dying person, narrations of daily situations was described by four themes related to identity and everyday life; inside and outside of me, searching for togetherness, my place in space and my death and my time. The changing body, pain, fatigue, decreased physical capacity and changed appearance, appeared to influence the dying person’s need for altered knowledge and community, and as a result the patterns of interaction within the families changed. The strive for knowledge and community took place at home, an arena for identity work and the conscious search for meaning, knowledge and community; it was limited by time and inevitable death (paper III). For the family member, life close to death can mean sharing life with a changing person in a changing relationship (paper II). It may mean that everyday life needs to be modified in order for it to work (papers I-IV). New patterns of dependence and an asymmetrical relationship affect all involved (papers III-IV). Daily life close to death is about finding the space to promote the individual self-image, me-ness, at the same time as finding new ways of being a family; we-ness (paper II). Regardless of being the ill person or not, the family members we interviewed had to face impending death, which challenged earlier ways of living together (papers I-IV). From the perspective of the relatives, the everyday life of caring for the dying family member was characterized by challenged ideals, stretched limits and interdependency (paper I). Situations that challenged the caregivers’ self-image were connected to intimacy, decreasing personal space and experiences such as “forbidden thoughts”. The findings suggest that the bodily changes were of importance for the self-image, and that the former approach to the own body was important in the process of experiencing the body. The person living close to death was in transition to something new; being dead in the near future. One way of handling the struggles of everyday life was to seek togetherness, strive to find other persons with similar experiences while sharing thoughts and feelings. Togetherness was sought within the family, in the health care system and on the internet; a sense of togetherness was also sought with those who had already died. The other family members were also in transition as the future meant living on without the ill family member and changing their status to for example being a widow or being motherless. Identity work close to death denotes creating an access ramp into something new; a transition into the unknown. From a clinical perspective, this study emphasizes the significance of creating a climate that allows caregivers to express thoughts and feelings.

This thesis deals with first aid knowledge among the general public. The theoretical part focuses on the basic aspects of first aid. The practical part is a survey of the results of the research, which are then evaluated and commented upon in the discussion. The research group consisted of people of working age. To obtain the data used quantitative research, carried out by polling, through a questionnaire. Based on its evaluation were confirmed or refuted in advance the hypothesis. These hypotheses were statistically verified. Research suggests that the level of knowledge of the general public is not sufficient.

Orientadores: Emílio Carlos Elias Baracat, André Moreno Morcillo / Dissertação (mestrado) - Universidade Estadual de Campinas, Faculdade de Ciências Médicas / Made available in DSpace on 2018-08-19T05:38:31Z (GMT). No. of bitstreams: 1 Romaneli_MarianaTresoldidasNeves_M.pdf: 5685752 bytes, checksum: bb58b36a9e0f1344d34b1120bc8b2e0b (MD5) Previous issue date: 2011 / Resumo: Introdução: Os ALTEs (eventos com aparente risco de morte) são episódios súbitos de alteração da coloração da pele (cianose ou palidez), da freqüência respiratória (apnéia) e do tônus muscular (hipotonia), e podem ser a primeira manifestação de inúmeras doenças congênitas ou adquiridas. Embora a história natural dos ALTEs seja benigna, existe risco de mortalidade subseqüente. Objetivos: Avaliar as características clínicas, epidemiológicas e os fatores associados ao óbito de lactentes atendidos na Unidade de Emergência Referenciada (UER) Pediátrica do Hospital de Clínicas (HC) da Universidade Estadual de Campinas (UNICAMP) com história de ALTE. Casuística e Métodos: Estudo transversal retrospectivo descritivo e analítico. Foram incluídos lactentes menores de 12 meses que apresentaram evento súbito de cianose, palidez, hipotonia e/ou apnéia e que foram atendidos na UER Pediátrica. Os dados foram coletados a partir dos Boletins de Atendimento de Urgência (BAUs), através de uma ficha previamente elaborada. Os dados obtidos foram processados com o software SPSS, versão 16.0, utilizando-se o teste de Mann-Whitney para comparação das idades. Para avaliar a associação do óbito com as variáveis independentes, determinou-se os valores de odds ratio bruto por regressão logística. Foram selecionadas para inclusão no modelo logístico multivariado não condicional aquelas que apresentavam associação na análise bivariada. Adotou-se o nível de significância de 5%. Resultados e Conclusão: O ALTE foi mais freqüente na faixa etária entre 9 e 15 semanas de vida, afetando igualmente ambos os gêneros. A manifestação mais comum de ALTE foi cianose, acompanhada ou não de outros sinais e sintomas. Os eventos únicos e de curta duração foram mais freqüentes, a maioria com melhora espontânea. Metade dos pacientes permaneceu internada por mais de 72 horas, em observação clínica e investigação etiológica do evento. O diagnóstico da doença que provocou o ALTE não foi esclarecido em 35,2% dos lactentes. Os demais foram elucidados e a maioria relacionada a doenças do trato respiratório. Durante a internação, a mortalidade dos lactentes com ALTE foi de 7,6%. O maior risco de óbito esteve presente na faixa etária acima dos 6 meses e quando os episódios não tiveram resolução rápida e espontânea, principalmente quando ocorreram como primeira manifestação de doenças do sistema cardiocirculatório / Abstract: Introduction: ALTEs (apparent life-threatening events) are sudden episodes of color change (paleness or cyanosis), apnea and marked change in the muscle tone (limpness), which may be the first sign of an underlying disease (congenital or acquired). Although the ALTE?s natural course is usually benign, there is a risk of subsequent death. Objectives: The aim of this study was to evaluate clinical and epidemiological characteristics, as well as the risk factors associated with mortality of infants who had presented an ALTE and were taken to the Emergency Pediatric Unit from the Clinical Hospital of the State University of Campinas (HC UNICAMP). Casuistic and Methods: Retrospective, transversal, descriptive and analytical study, There were included every infant younger than 12 months old, who had been taken to the Emergency Pediatric Unit after experienced a sudden episode of cyanosis, paleness, limpness and/or apnea. The data was collected from the Emergency care bulletin of each infant, using a previously elaborated card. The data obtained was processed with the software SPSS 16.0. To compare the ages, Mann-Whitney test was used. To evaluate the association among death with the independent variables, logistic regression was used to establish the odds ratio. The multivariate analysis included those variables with positive association in the bivariate analysis. The significance value used was 5%. Results and Conclusion: ALTE occurred more frequently around the ages of 9 and 15 weeks, achieving equally male and female infants. The most common sign observed during the event was cyanosis, with or without other signs and symptoms. The isolated events, with short duration were more frequent, mostly with spontaneous recovery. About 50% of the infants were hospitalized for more than 72 hours in observation and investigation of the underlying disease that caused the ALTE. The diagnosis couldn?t be established in 35.2% of the patients, and in the others, respiratory diseases were the most frequent ones. During the hospitalized investigation, 7.6% of the infants died. The risk factors associated with subsequent mortality were the age greater than 6 months and episodes with slow recovery, especially if the underlying disease affected the cardio-circulatory system / Mestrado / Pediatria / Mestre em Ciências

The thesis focuses on posttraumatic growth in adolescents and young adults. The subject of the research is finding and tracking reactions and changes that emerge after a specific stimulus - an existentially experienced trauma, where at the core is realizing the threat of life and afterwards thinking about one's own death. The theoretical part deals with psychological and philosophical sources of current concepts of post-traumatic growth. These sources support our assumption that for the specific course of post-traumatic reactions and changes the subject category or objective severity of events is not relevant. It is the respondents own perception of a life threat. We also deal with a particular PTG model by Tedeschi and Calhoun, whose concept of changes after a major life event was chosen as the starting point for our research and whose PTGI questionnaire is used in the quantitative part. In the empirical part we chose mixed research design. First, a quantitative part of the research was carried out, involving 407 respondents aged 17-25. The aim of this part was to determine the rate of post-traumatic growth and to demonstrate that perceived life threats occur among respondents across all event categories. The personal perception of a life threat will result into a higher score achieved in both...

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<p>Nydebuterad svår sjukdom kan ta tid att ta till sig och patienten kan till en början känna sorg och oro. En av flera sådana sjukdomar är Reumatoid artrit (RA) där vården på senare år insett vikten av tidiga insatser för att sjukdomen ska kunna bromsas upp. Ofta får nyinsjuknade patienter, oavsett vilken sjukdomsgrupp de tillhör, mycket information på kort tid och ska därefter klara av att ta sina mediciner och sköta sin hälsa själva hemma. När mycket information ges vid ett och samma tillfälle kan det vara svårt att minnas och uppfatta allt. Syftet med studien är att beskriva hur patienterna upplever informationen i ett tidigt och akut skede när de drabbas av kronisk eller livshotande sjukdom. En litteraturstudie har gjorts av elva kvalitativa artiklar som granskats och analyserats med hjälp av Evans (2003) modell för innehållsanalys. Tre teman och ett subtema utkristalliserades genom analysen: Tema 1: <em>Avsaknad av dialog </em>med subtema; <em>Inte förmögen att ta emot information, </em>upplevelse av opersonlig och generell information som var svår att identifiera sig med och krisreaktioner blockerade förmågan att ta in det som sades. Tema 2: <em>Vetskap ger trygghet, </em>upplevelser av att informationen gav styrka, kontroll och trygghet. Tema 3: <em>Avsaknad av stöd</em>, upplevelser av att behovet av emotionellt stöd inte tillgodosågs och informationen efterlämnade en känsla av isolering och ensamhet.</p> / <p>Diagnosis of a serious disease can be difficult to accept and patients can initially experience sadness and concern. One such disease is Rheumatoid Arthritis (RA) and recent evidence has proven the importance of early treatment in slowing down its progress. Newly diagnosed patients, despite which group they fall into, are often given a large amount of information in a short time and are expected to take medication and look after their own wellbeing at home. When lots of information is passed on at once it can be very difficult to understand and remember. The aim of this study is to describe how patients experience information in an early and acute stage when they are diagnosed with a life-threatening or chronic disease. A literature study was made of eleven qualitative articles which were explored and analysed using Evans (2003) model for content analysis. Three themes and a sub-theme crystallized through this analysis: Theme 1: <em>Missing dialog</em>, sub-theme: <em>Non-ability to absorb information</em>, experience of impersonal and generalized information which was difficult to identify with and crisis-reactions which blocked the ability to absorb the information. Theme 2: <em>Knowledge is comfort</em>, the feeling that information gave strength, control and comfort. Theme 3: <em>Lack of Support</em>, the requirement for emotional support was not fulfilled and the information left a feeling of isolation and loneliness.</p>

Nydebuterad svår sjukdom kan ta tid att ta till sig och patienten kan till en början känna sorg och oro. En av flera sådana sjukdomar är Reumatoid artrit (RA) där vården på senare år insett vikten av tidiga insatser för att sjukdomen ska kunna bromsas upp. Ofta får nyinsjuknade patienter, oavsett vilken sjukdomsgrupp de tillhör, mycket information på kort tid och ska därefter klara av att ta sina mediciner och sköta sin hälsa själva hemma. När mycket information ges vid ett och samma tillfälle kan det vara svårt att minnas och uppfatta allt. Syftet med studien är att beskriva hur patienterna upplever informationen i ett tidigt och akut skede när de drabbas av kronisk eller livshotande sjukdom. En litteraturstudie har gjorts av elva kvalitativa artiklar som granskats och analyserats med hjälp av Evans (2003) modell för innehållsanalys. Tre teman och ett subtema utkristalliserades genom analysen: Tema 1: Avsaknad av dialog med subtema; Inte förmögen att ta emot information, upplevelse av opersonlig och generell information som var svår att identifiera sig med och krisreaktioner blockerade förmågan att ta in det som sades. Tema 2: Vetskap ger trygghet, upplevelser av att informationen gav styrka, kontroll och trygghet. Tema 3: Avsaknad av stöd, upplevelser av att behovet av emotionellt stöd inte tillgodosågs och informationen efterlämnade en känsla av isolering och ensamhet. / Diagnosis of a serious disease can be difficult to accept and patients can initially experience sadness and concern. One such disease is Rheumatoid Arthritis (RA) and recent evidence has proven the importance of early treatment in slowing down its progress. Newly diagnosed patients, despite which group they fall into, are often given a large amount of information in a short time and are expected to take medication and look after their own wellbeing at home. When lots of information is passed on at once it can be very difficult to understand and remember. The aim of this study is to describe how patients experience information in an early and acute stage when they are diagnosed with a life-threatening or chronic disease. A literature study was made of eleven qualitative articles which were explored and analysed using Evans (2003) model for content analysis. Three themes and a sub-theme crystallized through this analysis: Theme 1: Missing dialog, sub-theme: Non-ability to absorb information, experience of impersonal and generalized information which was difficult to identify with and crisis-reactions which blocked the ability to absorb the information. Theme 2: Knowledge is comfort, the feeling that information gave strength, control and comfort. Theme 3: Lack of Support, the requirement for emotional support was not fulfilled and the information left a feeling of isolation and loneliness.

Background: We aimed to increase the knowledge regarding the familial arrhythmogenic disorder Long QT Syndrome (LQTS) and its recessive variant Jervell and Lange-Nielsen Syndrome (JLNS) in Sweden, including prevalences and clinical phenotypes. A specific focus was directed towards two KCNQ1 mutations –p.Y111C and p.R518X- commonly identified in Swedish LQTS index cases. Methods: Cases and families with LQTS (p.Y111C or p.R518X) and JLNS were recruited via regional clinical practices, national referrals to the Clinical Genetics laboratory, Umeå University Hospital, and a national inventory. Molecular genetics methods were used for case ascertainment. Clinical data was obtained via medical records, a questionnaire, and/or an interview. Electrocardiograms were manually assessed. In p.R518X heterozygotes intra-familial phenotypic variability (QTc and cardiac events) was assessed by analysis of sequence variants (modifier genes). The origins of the mutations p.Y111C and p.R518X were investigated using genealogical and haplotype analysis (microsatellite markers). In families sharing a common haplotype mutation age and associated prevalence was analyzed using ESTIAGE and DMLE computer software. Results: We identified p.Y111C (170 mutation-carriers) and p.R518X (101 mutation-carriers) as two major causes of LQTS/JLNS in Sweden. LQTS phenotype was revealed to be relatively benign in p.Y111C and p.R518X (annual incidence of life-threatening cardiac events, before therapy 0.05% and 0.04%, respectively). Gender-specific effects of genetic modifiers on phenotypic expression were seen. A founder origin, approximately 600-700 years ago in two northern river valleys was established for p.Y111C and p.R518X, and a high prevalence of LQTS founder descendants suggested. A minimum JLNS prevalence of 1:200 000 in preadolescent Swedish children was revealed. JLNS phenotype was mainly severe, with a cumulative incidence of life-threatening cardiac events of 53% (annual incidence rate before therapy 5%) and four sudden deaths. Possible founder effects regarding four KCNQ1 mutations; p.Y111C (8%), p.R518X (50%), c.572_576del (17%) and p.Q530X (8%) together explained 83% of the JLNS mutation-spectrum in Sweden, consisting of 8 KCNQ1 mutations. Conclusion: The high prevalence of p.Y111C- and p.R518X-related LQTS as well as JLNS revealed in Sweden could be explained by the combination of mild clinical phenotypes in heterozygotes and strong founder effects present during the population development of northern Sweden. Increased knowledge regarding the occurrence of LQTS and JLNS as well as mutation- and/or genotype-specific data constitute prerequisites for possible improvement of patient management.