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BACKGROUND: When a child is afflicted by a life-threatening disease, it places a huge burden on the family. AIM: To gain a deeper understanding of parents' experiences of psycho-social support in a group activity for families with children and adolescents suffering from cancer. METHOD: Data were collected by means of focus group interviews with 10 parents from eight families with children treated for cancer during the period 2011-2017. The interviews were transcribed and analysed in accordance with qualitative content analysis. RESULTS: An overarching theme"Togetherness in loneliness" emerged, highlighting the importance of sharing experiences, based on the main categories: "a clearing house" and "a meeting place". A clearing house was described as a place for sharing experiences on equal terms and a short cut to care contacts. A meeting place was depicted as a temporary home, a place for recuperation, but that sharing also had a cost. DISCUSSION: The results revealed that the parents of children suffering from cancer experienced the group activity for such families as an important support during the treatment period. The group served as an arena for mutual support and exchange of experiences, but it was also an easy way for the participants to access psychosocial support at an early stage of the cancer treatment. There was a risk that the participants would be unable to cope with sharing the anxiety and setbacks experienced by others, something that might be difficult to foresee when joining the group.
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Solidão , Neoplasias , Adaptação Psicológica , Adolescente , Criança , Família , Humanos , Pais/psicologia , Pesquisa Qualitativa , Apoio SocialRESUMO
BACKGROUND: The vast availability of and demand for evidence in modern primary healthcare force clinical decisions to be made based on condensed evidence in the form of policies and guidelines. Primary healthcare managers play a key role in implementing these governing documents. Thus, the aim of this article is to investigate the use and availability of evidence-based practice resources from the perspective of first-line primary healthcare managers. METHODS: The study is based on a national survey of primary healthcare managers, consisting of 186 respondents, recruited nationally from Sweden. The data was analysed using empirically constructed concepts and validated using factor analysis. A chi-square test was utilized to determine the statistical significance of comparisons. Associations between variables were calculated using Spearman's correlation coefficients. All tests were two-sided, and the significance level was set to 0.05. RESULTS: A majority (97 %) of managers stated that guidelines and policy documents impacted primary healthcare; 84 % of managers observed a direct effect on daily practices. Most of the managers (70 %) stated that some adaptation was needed when new evidence was introduced. The managers emphasized the importance of keeping themselves updated and open to new information about work routines (96 %). CONCLUSIONS: The study illustrates a nearly unanimous response about the influence of clinical evidence on daily practice. The emphasis on the importance of all staff members keeping their professional knowledge up to date is viewed as a direct result of this effect on daily practice. An information-dense organization such as a primary healthcare organization would have much to gain from increased cooperation with regional information resources such as clinical libraries.
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Prática Clínica Baseada em Evidências , Atenção Primária à Saúde , Humanos , SuéciaRESUMO
Built on the important functions daily routines serve families and child health, this study aimed to explore parents' descriptions of mealtimes and food-related challenges when living with a child using a gastrostomy feeding tube. The study was informed by ecocultural theory and based on in-depth interviews combined with stimulated recall. The interviews of 10 parents were inductively analyzed by means of qualitative content analysis. Four main categories comprised the parents' descriptions: "One situation, different functions," "On the child's terms," "Doing something to me," and "An unpredictable pattern," with one overarching theme. The analyses showed that the parents strived to establish mealtimes in line with their cultural context, although they struggled to reach a point of satisfaction. The study highlights the importance of health care professionals to address the medical aspects of caring for a child with a G-tube, but also the potential psychological and social consequences for ordinary family life.
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Nutrição Enteral , Gastrostomia , Criança , Família , Humanos , Refeições , PaisRESUMO
PURPOSE: To explore children's experiences of mealtimes when living with a gastrostomy tube. DESIGN AND METHODS: The study used a qualitative descriptive design framed within ecocultural theory. Seven children, three girls and four boys, aged 6-12 years with long-term health conditions and a gastrostomy tube participated in individual interviews. The interviews were qualitatively analysed by means of systematic text condensation. RESULTS: Four main categories comprised the findings of the children's mealtimes experiences: "Stable in form, open to variation," "An individual, and a shared activity," "An object that needs to be dealt with" and "A part of me." A complex picture emerged, where the children experienced nutrition, whether through the gastrostomy tube or orally, as necessary for a healthy body, although this did not suffice to make the mealtime experience positive. CONCLUSIONS: Regardless of the children's amount of oral intake, everyday mealtimes were valued as opportunities for social interaction and experienced as a predictable, routine activity no different from the mealtimes of other families. The accounts illustrated that in many situations the children knew precisely what they needed and did not need, what they liked and disliked and why. PRACTICE IMPLICATIONS: Healthcare professionals should take children's knowledge into consideration to a greater extent when planning follow-up and intervention. The study illuminates that children can take an active part in their healthcare when offered flexible and carefully designed communication material, even in the presence of communicative and/or intellectual disability.
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Gastrostomia , Refeições , Criança , Feminino , Pessoal de Saúde , Humanos , Masculino , Pesquisa QualitativaRESUMO
Objective: To explore lived experiences of patients communicating with and receiving information from primary health care.Design: Qualitative study analysing transcribed interviews by descriptive content analysis.Setting: Recruitment and interviews took place in southern Sweden in three primary care centres where privacy and undisturbed interview environments was ensured.Subjects: 17 primary care patient informants, 9 men and 8 women aged 31 - 84 years with varying educational levels from primary school to post graduates.Main outcome measures: Thematic categories and subcategories reporting the lived experience of the patients.Results: The analysis yielded three categories and identified as a main theme a feeling of unpredictability based on the emotional aspects of feeling lost and vulnerable when trying to access primary care. The category" Need for easy access" illustrated emotional aspects of importance to patients when contacting primary health care." Need for individual adaptation" described the need to individually adapt health related information." Information exchange" comprised experiences of information evaluation and understanding new information.Conclusions: Patients generally trusted the information received, but experienced a lack of communication, which evoked feelings of unpredictability and abandonment. Experiences of limited access to primary health care and the need for varying degrees of adaptation on the part of the individual were factors of concern for how patients experienced the care.Key PointsSmooth communication and understandable information are fundamental for quality primary health care. This qualitative interview study identified the following key points from analysing the views of 17 patients:⢠Patients indicated a feeling of unpredictability due to lack of access to and communication with health professionals.⢠Patients sometimes reported an inability to understand information conveyed by health professionals.⢠Being able to form relationships with health professionals was crucial for patients' trust and understanding.
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Letramento em Saúde , Pessoal de Saúde/psicologia , Relações Profissional-Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Comunicação , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Atenção Primária à Saúde , Qualidade da Assistência à Saúde , SuéciaRESUMO
Patients who undergo a surgical intervention require information in the preoperative phase. Few qualitative studies are available that illuminate the importance of preoperative information for patients' experiences of postoperative pain management. The aim of this study was to examine patients' perceptions of preoperative information about pain treatment as well as its importance for the way pain was managed in the postoperative phase. A descriptive, qualitative study using individual interviews was performed. Content analysis was employed to analyze individual interviews with 18 patients who had undergone total hip or knee joint plastic surgery. Every second participant received verbal information on pain treatment in the standard way at the preoperative discussion, whereas the others were also provided with written information. The interviews took place in a public hospital, on the second or third postoperative day, between September and November 2010. The study revealed that a combination of written and verbal information on pain relief was perceived as valuable by the patients. Four main categories were identified: The form of information; the content of the information; the patients' experience of postoperative pain relief, and factors that influenced the patients' experience of pain relief. The theme "Participation" emerged from the latent content. Preoperative information on pain relief facilitated increased patient participation. Health care professionals often aim to ensure that patients participate in the care, but the latter sometimes lack the desire, strength, or ability to become involved.
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Artroplastia de Quadril , Artroplastia do Joelho , Comunicação , Manejo da Dor/enfermagem , Dor Pós-Operatória , Educação de Pacientes como Assunto/métodos , Participação do Paciente , Cuidados Pré-Operatórios/enfermagem , Idoso , Idoso de 80 Anos ou mais , Recursos Audiovisuais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
BACKGROUND: Primary care depends upon a good information flow across professional and structural boundaries to provide the best care for patients. Previous research has mainly focused on Evidence-Based Practice (EBP) within specific professions. Mapping of pan-professional experiences of and attitudes to EBP in publicly funded clinical practice is necessary to deepen the understanding of EBP and its implementation. Thus, this study aimed to investigate healthcare professionals' experiences of and attitudes towards working in accordance with EBP in primary care. METHODS: The study used a convergent mixed methods design divided into two strands: a quantitative enquiry tool (Evidence-Based Practice Attitude Scale, EBPAS) and a set of qualitative interviews analysed by means of qualitative content analysis. Both strands included all primary care employees with patient interaction in the studied county (n = 625), including doctors, nurses, physiotherapists, psychologists and assistant nurses. Out of the original 625 healthcare professionals, 191 finished the first strand and 8 volunteered for the second strand (2 nurses, 2 physiotherapists, 1 psychiatrist and 3 doctors). RESULTS: The EBPAS value of 2.8 (max 4) indicated a generally positive attitude towards EBP amongst the population, which was also evident in the interviews. However, there were additional experiences of not having the ability or resources to engage in EBP. This was illustrated by the theme that emerged from the qualitative content analysis: "The dilemma of the split between theory and reality". Due to the organisational and managerial focus on efficiency rather than quality of care, there were few or no incentives for promoting individual educational or research development. CONCLUSIONS: Although the general attitude towards EBP is positive, experiences of practising it differ. There is a need to increase knowledge of EBP concepts, requirements and implementation in the clinical setting. The absence of opportunities to do research and collegial debate about new ways of finding and implementing research-based evidence results might influence the quality of care.
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Fisioterapeutas , Médicos , Humanos , Prática Clínica Baseada em Evidências/métodos , Atitude do Pessoal de Saúde , Atenção Primária à SaúdeRESUMO
AIM: To explore health-care professionals' documentation of patient wellbeing in the first five months after open heart surgery. BACKGROUND: Open heart surgery (coronary artery bypass grafting or heart valve replacement) is an intervention aimed at relief of symptoms and increased wellbeing. It is a complex procedure with deep experiences encompassing physiological, psychological and social aspects. Health-care professionals' documentation of expressions of decreased wellbeing related to open heart surgery is an important basis for decisions and for the understanding of patients' overall health situation. METHOD: Eighty medical records were examined by means of qualitative and quantitative methods in order to explore documentation of patient wellbeing at four points in time. The analysis was performed by content analysis and descriptive statistics. RESULTS: Documentation of physical wellbeing was dominant on all occasions, while psychological wellbeing was moderately well documented and social aspects of wellbeing were rarely documented. CONCLUSION: The medical records did not adequately reflect the complexity of undergoing open heart surgery. Hence the holistic approach was not confirmed in health-care professionals' documentation. IMPLICATIONS FOR NURSING MANAGEMENT: Managers need to support and work for a patient-centred approach in cardiac care, resulting in patient documentation that reflects patient wellbeing as a whole.
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Procedimentos Cirúrgicos Cardíacos , Documentação , Prontuários Médicos/normas , Adulto , Idoso , Ponte de Artéria Coronária , Feminino , Doenças das Valvas Cardíacas/cirurgia , Humanos , Masculino , Pessoa de Meia-Idade , Período Pós-OperatórioRESUMO
Background: The Primary care manager plays a vital role in promoting a research culture in the healthcare center. The position involves both the implementation of organizational directives and patient care. The research culture and use of evidence influence each individual healthcare professional and ultimately the quality of patient care. Purpose: To describe primary healthcare managers' understanding of evidence-based practice in the Swedish primary healthcare context and their ability to influence its implementation. Methodology: Qualitative content analysis of data collected in individual interviews. Results: In general, managers expressed a positive view toward the use of evidence in daily practice. However, they were sometimes hesitant about fully implementing evidence-based results. This was mostly attributed to the struggle of balancing finances and allocating sufficient time for staff to keep up with and engage in evidence-based practice. Conclusion: The organizational culture impacts the mind-set of all co-workers including managers. Those managers influenced by traditions and norms may fall into the trap of devaluing the benefit of research and evidence. The inherent feeling of being alone and without guidance in some matters related to evidence-based practice inevitably leads to inconsistency and ambiguity. The use of clinical pathways that constitute one form of evidence has become a substitute for proper, careful, individual investigation, implementation, and evaluation of each patient case. This means that managers experience moral and physical stress when trying to meet organizational, staff, and patient demands. Practice Implication: Awareness of managers' influence and experience of working according to evidence-based practice is valuable to gain an insight into how Swedish primary healthcare functions at local level. Illuminating and discussing evidence-based practice is an assurance of quality that contributes to many aspects of the overall safety of care.
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AIM: The aim of this study was to explore how health care professionals perceive the well-being of patients and relatives following open-heart surgery. BACKGROUND: Open-heart surgery is an extraordinary life event associated with hope and fear among both patients and relatives, thus they require attention from health care professionals. Patients' short stay in hospital after surgery and the workload of health care professionals increase the risk that reduced well-being will be overlooked. Health care professionals need to become familiar with the signs of reduced well-being. DESIGN: The study has an observational design and was performed using a qualitative method. METHOD: Health care professionals working with patients who have undergone open-heart surgery participated in focus group discussions. The data were analysed by means of content analysis. RESULTS: Two categories emerged: signs of vulnerability and signs of insecurity. The latent meaning of the study was interpreted as awareness of an exposed position. CONCLUSION: The health care professionals were aware of patients' and relatives' exposed position following open-heart surgery. Reduced well-being was communicated by bodily and emotional signs, which were captured using direct communication or intuition. RELEVANCE TO CLINICAL PRACTICE: Developing the ability to recognise signs of reduced well-being is important for minimising the negative influences associated with open-heart surgery for patients and relatives. Increased awareness that both anger and avoidance can mask depression is important. Patients and their relatives, particularly younger ones, should be observed to ensure early detection of a life crisis provoked by the heart disease. Furthermore, staff should invite patients and their partners to talk about sexuality. Changes aimed at increasing patients' and relatives' well-being would be facilitated by interdisciplinary teamwork, 'reflection groups' for a greater exchange of knowledge and the implementation of a patient/family perspective. The latter would lead to greater interest in the relatives' situation and position in cardiac care.
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Procedimentos Cirúrgicos Cardíacos , Família/psicologia , Pacientes/psicologia , Satisfação Pessoal , Atitude do Pessoal de Saúde , Feminino , Grupos Focais , Humanos , Masculino , Qualidade de VidaRESUMO
Background: Everyday routines play a vital role in child functioning and development. This study explored health professionals' documentation of everyday life and health care during the first year following gastrostomy tube placement in children and the content of intervention goals.Methods: The medical records of 39 children (median age 38 months, min-max: 15-192) in one region of Sweden were analysed. A content analysis approach was used with an inductive qualitative analysis supplemented by a deductive, quantitative analysis of documented intervention goals following the ICF-CY.Results: One overall theme, "Seeking a balance", captured the view of life with a gastrostomy and the health care provided. Two categories, "Striving for physical health" and "Depicting everyday life" with seven sub-categories, captured the key aspects of the documentation. Twenty-one children (54%) had intervention goals related to the gastrostomy, and these goals primarily focused on the ICF-CY component "Body functions".Conclusions: To some extent the medical records reflected different dimensions of everyday life, but the intervention goals clearly focused on bodily aspects. Understanding how health care for children using a gastrostomy is documented and planned by applying an ecocultural framework adds a valuable perspective and can contribute to family-centred interventions for children using a gastrostomy.Implications for RehabilitationThere is a need for increased awareness in healthcare professionals for a more consistent and holistic healthcare approach in the management of children with gastrostomy tube feeding.This study suggests that an expanded focus on children's participation in everyday mealtimes and in the healthcare follow-up of gastrostomy tube feeding is important in enhancing the intervention outcome.Multidisciplinary teams with a shared bio-psycho-social understanding of health would contribute to a situation in which the everyday lives of households adapt to living with gastrostomy.Routine care for children with gastrostomy should follow a checklist combining crucial physiological aspects of gastrostomy tube feeding with seemingly mundane family functions in order to achieve a successful gastrostomy tube feeding intervention.
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Gastrostomia , Prontuários Médicos , Criança , Pré-Escolar , Atenção à Saúde , Documentação , Humanos , SuéciaRESUMO
INTRODUCTION: Ventricular arrhythmias are uncommon after coronary artery bypass grafting (CABG), but the incidence and mortality are high in certain subsets of patients during the early recovery after surgery. Elevated temporal lability of myocardial repolarization has been associated with sudden cardiac death. The aim of the current study was to explore temporal variability of myocardial repolarization during both early and longtime follow-up after CABG. METHODS AND RESULTS: Patients (n = 61) who had undergone CABG and healthy subjects (HS, n = 33) were examined. Electrocardiogram and beat-to-beat blood pressure were recorded at 5 weeks and 5 months after surgery. The QT variability index (QTVI) was calculated as the log ratio between the temporal variabilities of the QT and RR intervals. The QTVI and QT variances were elevated by 40% and 44%, whereas RR variances were reduced by 40% among patients 5 weeks after CABG compared to HS (-0.90 +/- 0.59, 29 +/- 30, and 1223 +/- 1895 ms(2) vs -1.50 +/- 0.29, 15 +/- 16, and 2200 +/- 2877 ms(2) for HS; P < .01 for all). The QTVI and QT variances decreased by 38% and 31% between 5 weeks and 5 months after CABG, whereas the RR variances increased by 51% (P < .01 for all). The QTVI values remained elevated among patients compared to HS at 5 months after CABG (P < .01), whereas QT and RR variances did not differ. CONCLUSION: Elevated temporal lability of myocardial repolarization prevails particularly during the early recovery phase after CABG and may reflect increased susceptibility to ventricular arrhythmia.
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Ponte de Artéria Coronária/efeitos adversos , Doença da Artéria Coronariana/complicações , Doença da Artéria Coronariana/cirurgia , Eletrocardiografia/métodos , Fibrilação Ventricular/diagnóstico , Fibrilação Ventricular/etiologia , Adulto , Idoso , Doença da Artéria Coronariana/diagnóstico , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Studies on long-term feeding and eating outcomes in children requiring gastrostomy tube feeding (GT) are scarce. The aim of this study was to describe children with developmental or acquired disorders receiving GT and to compare longitudinal eating and feeding outcomes. A secondary aim was to explore healthcare provision related to eating and feeding. METHODS: This retrospective cohort study reviewed medical records of children in 1 administrative region of Sweden with GT placement between 2005 and 2012. Patient demographics, primary diagnoses, age at GT placement, and professional healthcare contacts prior to and after GT placement were recorded and compared. Feeding and eating outcomes were assessed 4 years after GT placement. RESULTS: The medical records of 51 children, 28 boys and 23 girls, were analyzed and grouped according to "acquired" (n = 13) or "developmental" (n = 38) primary diagnoses. At 4 years after GT placement, 67% were still using GT. Only 6 of 37 (16%) children with developmental disorders transferred to eating all orally, as opposed to 10 of 11 (91%) children with acquired disorders. Children with developmental disorders were younger at the time of GT placement and displayed a longer duration of GT activity when compared with children with acquired disorders. CONCLUSIONS: This study demonstrates a clear difference between children with developmental or acquired disorders in duration of GT activity and age at GT placement. The study further shows that healthcare provided to children with GT is in some cases multidisciplinary, but primarily focuses on feeding rather than eating.
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Transtornos de Deglutição/terapia , Atenção à Saúde , Deficiências do Desenvolvimento/terapia , Ingestão de Alimentos , Nutrição Enteral , Comportamento Alimentar , Transtornos de Alimentação na Infância/terapia , Criança , Pré-Escolar , Traumatismos Craniocerebrais/complicações , Transtornos de Deglutição/etiologia , Nutrição Enteral/métodos , Feminino , Gastrostomia , Pessoal de Saúde , Humanos , Lactente , Intubação Gastrointestinal , Estudos Longitudinais , Masculino , Neoplasias/complicações , Equipe de Assistência ao Paciente , Estudos RetrospectivosRESUMO
Although uncommon, the incidence of ventricular arrhythmia is high in certain subsets of patients after coronary artery bypass grafting. Arterial baroreflex dysfunction has been linked to increased risk of ventricular arrhythmia and sudden cardiac death. The aim of the current study was to explore arterial baroreflex function during the early recovery phase and up to five months after surgery. Electrocardiogram and beat-to-beat blood pressures were registered in patients (n=92) undergoing coronary artery bypass grafting five weeks and five months after surgery. Healthy subjects (n=31) were examined for comparison. The arterial baroreflex sensitivity and the baroreflex effectiveness index were calculated. The baroreflex sensitivity and the baroreflex effectiveness index were reduced by 36% and 64%, respectively (P<0.01 for both) in patients five weeks after coronary artery bypass grafting compared to healthy subjects (HS). Values increased during follow-up but the baroreflex effectiveness index remained reduced by 55% in patients compared to HS five months after cardiac surgery (P<0.01). Arterial baroreflex dysfunction prevails both early and long-term after coronary artery bypass grafting. Reduced modulation of cardiac parasympathetic nervous activity could contribute to the increased risk of ventricular arrhythmia observed during the early recovery phase after cardiac surgery.
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Artérias/fisiopatologia , Barorreflexo , Ponte de Artéria Coronária/efeitos adversos , Taquicardia Ventricular/etiologia , Adulto , Idoso , Pressão Sanguínea , Estudos de Casos e Controles , Eletrocardiografia , Feminino , Frequência Cardíaca , Humanos , Masculino , Pessoa de Meia-Idade , Sistema Nervoso Parassimpático/fisiopatologia , Recuperação de Função Fisiológica , Taquicardia Ventricular/fisiopatologia , Fatores de Tempo , Resultado do TratamentoRESUMO
BACKGROUND: Depression is a common cause of decreased well-being after open heart surgery (OHS) and a risk factor for new cardiac events. Little is known about the long-term prevalence of depressive symptoms after OHS or their effect on well-being. The aim of this study was to explore the presence of depressed mood in patients during the recovery phase after open heart surgery as well as depressed mood and well-being 3 years later. METHOD: Eighty consecutively included patients completed a questionnaire about depressed mood at 5 weeks, 5 months and 3 years after OHS. A telephone interview took place after receipt of the third questionnaire to explore their well-being. Quantitative and qualitative data were analysed separately and thereafter together. RESULT: Depressed mood occurred in 52% of the patients during recovery or 3 years after OHS. The qualitative content analysis produced the theme of transition, which was based on three categories. CONCLUSION: Depressed mood was reported by the majority of patients during recovery after OHS and had a long-term effect on their well-being. OHS constituted a transition for all patients, but those with depressed mood had difficulty finishing the transition process and reorientating life.
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Atitude Frente a Saúde , Procedimentos Cirúrgicos Cardíacos/efeitos adversos , Depressão/etiologia , Qualidade de Vida , Adulto , Idoso , Análise de Variância , Procedimentos Cirúrgicos Cardíacos/psicologia , Estudos de Casos e Controles , Depressão/epidemiologia , Depressão/psicologia , Feminino , Nível de Saúde , Inquéritos Epidemiológicos , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Pesquisa Metodológica em Enfermagem , Prevalência , Pesquisa Qualitativa , Qualidade de Vida/psicologia , Fatores de Risco , Índice de Gravidade de Doença , Estatísticas não Paramétricas , Suécia/epidemiologiaRESUMO
BACKGROUND: Open heart surgery often implies a threat to life and is associated with fear and anxiety. It is also a strong encroachment on body and integrity and adjusting life afterwards could be difficult. Despite improvements in treatment the patients' reactions appear to be unchanged. Introducing a lifeworld perspective would supply a different kind of knowledge based upon the patients' own experiences coloured by their linguistic usage and bodily expressions. AIM: The aim of this study was to describe patients' experiences of open heart surgery in a lifeworld perspective. METHOD: Fourteen patients treated with coronary artery bypass surgery and/or heart valve operation were in-depth interviewed in 2003. The phenomenological method was used for the interviews as well as for the analysis. The informants reflected on their experiences of the illness, meetings with health care, family relations and wishes for the future. FINDINGS: The essence of the phenomenon was fragility. Fragility was understood through the following categories: distance, uncertainty, vulnerability, reliance and gratitude. CONCLUSIONS: Patients want to be treated as unique individuals. They ask for more dialogues with the staff. Awareness of their supposed lifelong fragility implies that health care staff acquires an open and holistic approach.