| 1. |
- Brännström, Margareta, 1957-
(författare)
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Ett liv i berg och dalbana : innebörder av att leva med svår kronisk hjärtsvikt i palliativ avancerad hemsjukvård utifrån patienters, närståendes och sjuksköterskors berättelser
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall purpose of this thesis is to illuminate meanings of living with severe chronic heart failure (CHF) in palliative advanced home care (PAHC) as disclosed through patients’, close relatives’ and nurses’ narratives. This thesis comprises four papers that illuminate the phenomenon from various perspectives and with different focus. In paper I four patients with severe CHF in PAHC were interviewed. In paper II three of their close relatives were interviewed. In paper III one man and his wife in PAHC were interviewed at 3-5 month intervals over a 4.5-years period. In paper IV 11 nurses in PAHC were interviewed. In all papers narrative interviews were conducted and the text was interpreted using a phenomenological-hermeneutic method. The result shows that meanings of living with severe CHF in PAHC is to be ‘knocking on death’s door’ yet surviving. This means never knowing what to expect of tomorrow as one suffers from a complex array of unpredictable, interwoven symptoms. The course of the illness forces sufferer to ride a symbolical ‘roller coaster’, an ongoing oscillation between ‘ups and downs’. Being offered a safety belt in the ‘roller coaster’ by the PAHC team means feelings of safety (I). Meanings of being a close relative of a person with severe CHF in PAHC is to be following the life- threatening ups and downs that the ill person goes through. It is like being a fellow passenger on the ‘roller coaster’ ride that is their loved one’s disease, with burdensome responsibility for easing the ‘downs’ and supporting the ‘ups’. This means being on primary call, always on standby to mediate security and pleasure. In the deepest downs it is also to call for the back-up call i.e. the PAHC team (II). Meanings of living the ‘ups and downs’ over time is being captive in a roller-coaster ride, side by side, with the ‘ups and downs’ caused by the illness. Living close to death is inescapable when recurrent periods of deepest ‘downs’ force one to face that one’s life together is coming to an end. The relationship between the spouses is severely tested but seems to withstand the strain and meaning is found in togetherness in life. Sharing the safety belt on the ‘roller coaster’, offered by the PAHC team, evokes feelings of security. However, the safety belt is adjusted to the man with severe CHF leaving the wife partly without comfort and at times uncertain, especially in the deepest ‘downs’ (III). Meanings of being a palliative nurse for patients with severe CHF in PAHC is being firmly rooted and guided by the values of palliative culture. Being a facilitator for the patient with CHF to live his/her everydaylife in the best way possible is difficult, challenging but overall positive. The nurses get into a tight corner when palliative culture values clash and do not correspond to nurses’ interpretation of what is good for the patient with severe CHF. There is a limit to nurses’ pliability to patients’ and close relatives’ will, as they are strongly convinced that resuscitation is not an option. Nurses have already made up their mind about that they do not perform heart- lung resuscitation (IV). The comprehensive understanding is that meanings of living with severe CHF in PAHC is being captive in a ‘roller-coaster’ life with varying periods between unpredictable improvement and deterioration of the body, for the rest of life. Living with the unpredictable, deteriorated body means to oscillate between enduring the suffering in ‘downs’ and enjoying life in ‘ups’ (I-III). Living with death so close over and over again i.e. being in a limit situation evokes feelings of uncertainty (I-IV) and confidence (I-III). Being positive dependent on PAHC facilitates a life as normal as possible in togetherness at home (I-IV). The comprehensive understanding of the four papers (I-IV) are discussed in the light of a theoretical framework from the German psychiatrist and philosopher Karl Jaspers thoughts about limit situation, the Danish philosopher K.E Lögstrup thoughts about the ethical demand, palliative theories and relevant empirical studies.
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| 2. |
- Elmqvist, Carina, 1964-
(författare)
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Akut omhändertagande : i mötet mellan patienter, närstående och olika professioner på skadeplats och på akutmottagning
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: To describe and develop understanding of the patient’s first encounter with the involved persons at the scene of an accident and at the emergency department; with a special focus on describing the meaning of emergency care of patients in these caring contexts. Method: The thesis uses a reflective lifeworld research (RLR) approach founded on phenomenological philosophy. The purpose with this approach is to describe the essential meaning and the variations of a phenomenon. Interviews with a lifeworld perspective were used for data collection and analyzed according to the RLR approach for searching for the essence of the phenomenon. The four essences in the studies (I-IV) establish a general structure for the phenomenon.Findings: Emergency care is characterized by an organisation, whose goal and resources are focused on life-saving, and that encounters a human being with needs of emergency care as well as existential support. The responsibility in emergency care means an intertwining of doing and being. The one who is in charge takes responsibility for performing or “doing” medical actions, and by “being” close and present in the situation the patient can at the same time feel an existential support. The responsibility for the injured or ill body is handed over to a chain of persons with more and more specialized competence and resources. This hand-over entails a relief for all involved but fails in one link in the chain, namely to explicitly hand back the responsibility to the patient. When the patient’s condition allows the distance to be larger the responsibility pales and the existential support decreases. A gap between doing and being arises where the patient is left to regain control and independence. The intertwining of doing and being, which appears as soon as the one in charge is close and present to the patient, facilitates the hand-over to the patient who in a natural way is able to receive the responsibility with possibilities to be able to conclude the encounter.Conclusions: A new understanding of emergency care appears which entails more than just life support measures. Emergency care includes different ways of communication in order to hand over the responsibility and complete the care chain back to the patient in a safe way. The results highlight the importance of empowering patients with a confirming, communicative contact throughout the whole caring process in order for them to retain their identity. There are also implications for educating students and personnel in inter-professional communication and work. In order to assist the intertwining between doing and being there are needs for the development of supportive structures for inter-professional reflection, which in turn would improve the interaction between patients and professionals in their encounter.
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| 3. |
- Eriksson, Kerstin
(författare)
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Postoperative pain assessment and impact of pain on early physical recovery, from the patients' perspective
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Pain is a common postoperative experience. Guidelines recommend performing regular pain assessments, which include self-rated pain and additional communication to capture patients' experiences. During hospitalisation, pain intensity is found to be a vital factor influencing other aspects of an early physical recovery, and is consequently an important item in questionnaires for recovery. These tools consist of extensive questionnaires which are difficult to use in everyday clinical work. A simplified method of monitoring postoperative recovery would benefit both patients and healthcare professionals.Aim: The overall aim of this thesis was twofold: (A) to determine the ability of extending the use of pain ratings to reflect and predict early physical postoperative recovery and (B) to describe patients’ perspectives on pain assessments.Methods: The studies were carried out at one (I), three (IV) and four hospitals (II, III) involving general surgical and orthopaedic inpatients. Two quantitative methods were used based on data from questionnaires and medical records. They consisted of one cross-sectional study (I) and one study with repeated measures (IV). An association was sought between pain intensity and postoperative recovery on days 1 and 2 (I, IV), and prehospital data (IV). Two qualitative methods were used involving a phenomenographic (III) approach and Critical Incident Technique (IV), where semi-structured interviews were performed postoperatively and analysed inductively in accordance with the approach.Results: An association was found between moderate/severe average pain intensity compiled from monitoring records and impact on early physical postoperative recovery on day 1 (I). Retrospective average pain intensity at rest and during activity reflected impact on recovery on postoperative day 1 (IV). Severe pain intensity at rest and during activity on postoperative day 1 predicted impact on physical recovery items on day 2 (IV). The use of the Numeric Rating Scale (NRS 0-10) was considered to facilitate communication about pain, but to involve difficulties of interpretation and place demand on healthcare professionals and care routines (II). Patients’ descriptions of their experiences when in need of describing pain indicated two main areas: patients’ resources when needing to describe pain and ward resources for performing pain assessments (III). Descriptions of their actions when they were in pain indicated two main areas: patients used active strategies when needing to describe pain or patients used passive strategies when needing to describe pain (III).Conclusions: This thesis contributes to knowledge about the possibility of using patients' self-rated average pain intensity to reflect early physical postoperative recovery on day 1 and to predict recovery on the following day. The pain scale gave patients and healthcare professionals a shared vocabulary, which facilitated communication. Furthermore, dialogue during pain assessments was described as critical in ascertaining whether pain intensity had an impact on different aspects of physical recovery. Environmental factors such as the attitude of healthcare professionals, workload and staffing influenced how pain assessments were performed.
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| 4. |
- Gimbler Berglund, Ingalill
(författare)
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Developing guidelines in nursing care of children with Autism Spectrum Disorder in high technology health care settings
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction. The high technology environment such as a radiology and anaesthesia department in a typical health care setting can many times be a frightening environment for children. Children with neurodevelopmental disorders, such as Autism Spectrum Disorder (ASD), have problems with communication and social interaction. They are dependent on routines and can have higher sensitivity to sensory stimuli than other children. These children are one group who constitutes special challenges in reducing anxiety and creating participation in a high technology environment. This can make them prone to frightening encounters in health care settings if not cared for with special consideration.Aim: The overall aim of this thesis was to audit and enhance the care of children in a high technology environment in the health care system with a focus on children with Autism Spectrum Disorder.Methods: A descriptive design was used with both qualitative and quantitative methods. In Study I, 32 nurse anaesthetists were interviewed to explore the actions and experiences of caring for children in a high technology environment using a qualitative method, known as the Critical Incident Technique (CIT). In the two following studies (Study II, III) a cross-sectional design was used and two national surveys were performed to obtain knowledge on the status in Sweden regarding the care of children with ASD in high technology environments. Sixty-eight anaesthesia departments, 38 paediatric departments and 86 radiology departments responded to the survey. Descriptive statistic was used for the answers apart from the comments part of the questionnaire where qualitative content analysis was used. Due to the limited existence of guidelines in these environments, the creation ofevidence-based guidelines was performed in Study IV, using a Delphi method. The Delphi study was based on information gleaned from the previous studies and from the literature, and 21 experts identified in Study II and III were the expert panel developing the guidelines.Result: Nurses identified children with special needs such as children with ASD as a vulnerable group in a high technology environment (Study I). Seven departments in the anaesthesia context had guidelines for caring for children with ASD in the perioperative context. In the other departments, the care of children with ASD was dependent on the knowledge of the nurse presently working there (Study II). None of the radiology departments in Sweden had guidelines on how to care for children with ASD going through a radiographic examination without anaesthesia (Study III). As a result of Study I, II and III, the need for structured guidelines for caring for children with ASD in a high technology context was identified and a set of guidelines and a checklist was created. The guidelines relate to the organisational structure for the care of children with deficits in social interaction, communication, sensory sensitivity and dependence on routines. The checklist relates to gleaning information about the specific child to be able to give person-centred care based on the specific characteristic of the child (Study IV).Conclusion: Nurses working in a high technology environment in health care have diverse experiences of preventing anxiety in children with ASD coming for a challenging procedure. There are a limited number of evidence-based guidelines to decrease anxiety and to create participation in this group ofchildren. Evidence-based guidelines were created as a tool for enhancing person-centred care in a high technology environment for this group of children. The fact that several problems are assembled under one disorder makes ASD a useful condition to have as a basis for formulating national guidelines. Guidelines that cater for the care of children with ASD in a high technology environment using a person-centred approach may also extend to the care for children with other neurodevelopmental disorders that exhibit some of the same problems as children with ASD.
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| 5. |
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| 6. |
- Wikström, Lotta
(författare)
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The clinical utility of patients’ self-rated postoperative pain after major surgery – the perspective of healthcare professionals'
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The Numeric Rating Scale (NRS) is suitable in postoperative settings, yet, the implementation has shown varying results. This has raised issues about the pain scales contribution to the identifying and understanding of pain. The aim of this thesis was to describe the clinical utility of patients’ self-rated postoperative pain after major surgery from a healthcare professional perspective.The aim of study I and II was to describe healthcare professionals’ perceptions of the use of pain scales, and to through considering critical incidents describe care experiences and actions taken by healthcare professionals’ when assessing pain. Participants in study I (N=25) and II (N=24) were enrolled- registered nurses and physicians with clinical experiences of pain scales. The aims of study III and IV were to determine the clinical applicability of NRS mode- and maximum- measures, and the NRS mode- and median measures at rest and during activity based on patients self-rated pain. The aim in study IV was additionally to determine the number of NRS ratings needed for the calculation of these measures. The number of surgical and orthopedic patients who completed study III were: n=157 and study IV: n=479.Study I and II confirmed earlier findings of patients’ self-reported pain scores as a facilitator in the understanding of their postoperative pain. Organizational routines, documentation devices, clinical competence, continuity in care, collaborative actions, time, and individual routines were healthcare related factors affecting the use of pain scales (I, II). Patient-related facilitating factors were patients’ ability and willingness to communicate pain, while disability and unwillingness to communicate or inconsistency in verbal communication with observed behaviors were barriers (II). Time and multidimensional communication approaches could bridge these barriers (I, II).Study III and IV showed acceptable reliability for the mode, median and maximum measures. Rank correlations for individual median scores, based on four ratings, versus patients’ retrospective self-rated average pain, were moderate and strengthened with increased numbers of ratings. The Svensson method showed an individual variation within the expected outcome and a significant systematic group change towards a higher level of reported retrospective pain. The calculated pain measures, particularly concerning pain at rest, generally were lower than patients’ recall of pain.The findings described beneficial effects of patient self-reported pain, however present healthcare did not fully support the utilization of pain scales. Because of the simple measurement characteristics, the use of daily NRS average pain measures, patients’ pain can be followed until resolved. The measures could additionally become important patient reported outcome measures and thus constitute new motivators to increase the utilization of pain scales.
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| 7. |
- Åkerman, Eva, 1961-
(författare)
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Assessment and tools for follow-up of patients' recovery after Intensive Care
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of this thesis was to describe and explore the use and content of ICU-diaries and to develop and psychometrically test a questionnaire to detect physical and psychosocial problems for ICU patients in their recovery process. Methods: This thesis is based on four studies. Study I had an explorative descriptive design with a quantitative and qualitative approach. Data were collected by telephone interviews with staff at Swedish ICUs (n = 65) which kept ICU-diaries. One question “what was the purpose of keeping ICU-diaries” was analysed with latent content analysis, and the other data were analysed with descriptive and comparative statistics. Study II had an explorative descriptive cohort design with a concurrent mixed method approach. The sample in study II was a part of the sample in study IV in which 421 former ICU patients responded to a new developed questionnaire 3-set 4P two months after discharge from ICU. Patients from this sample who have had an ICU-diary (n = 115) responded to a questionnaire six months after discharge from ICU. Fifteen patients were interviewed about the content and usefulness of the ICU-diary. Data were analysed with descriptive statistics, descriptively by content and interviews with manifest content analysis and then combined at the interpretive level to seek convergence, as enable by the mixed method approach. Study III had a methodological design. In this study, the questionnaire 3-set 4P was developed and psychometrically tested in a pilot setting. In study IV, the questionnaire was further developed and tested based on psychometric evaluation of the 3-set 4P. In study III the questionnaire was responded by 39 patients and in study IV by 421 patients. Data in study III and IV were analysed with descriptive statistics and psychometrical tests. Results: The main purpose for keeping ICU-diaries was to provide a tool in the recovery by helping the patient remember and give time back. Keeping ICU-diaries was common although there was a difference in practice and patient recruitment among different hospitals (study I). An ICU-diary with content and photos in a chronological order describing the whole picture of critical illness and ICU stay could be a tool for the patient to construct a coherent individual story. The ICU-diary could be one piece to give a deeper understanding and meaning in the personal story and to give a realistic expectation of the recovery process. Absence of guidelines for keeping ICU-diaries could affect the possibility for the ICU-diary to be a helpful tool during the recovery process (study II). In study III, the 3-set 4P was developed to be used for identifying and evaluating former ICU patients’ physical, psychosocial problems and outcome during follow-up. The psychometrical tests showed acceptable validity and internal consistency reliability. The stability reliability was acceptable in two of three sets. The psychometrical tests of the further modified version of 3-set 4P in study IV showed good construct validity and internal consistency but it needs some modification before it can be used in clinical practice (study IV). Conclusion: Recovery can be a difficult process where different tools can be useful. Today there is no evidence about tools to use during follow-up. To promote high quality of the follow-up there is a need for evidence-based guidelines. The ICU-diary is one tool but this thesis shows that guidelines for keeping ICU-diaries have to be developed to meet the patients’ wishes in order for the ICU-diary to become a useful tool during the process to recovery. The 3-set 4P can after some modification be used at the follow-up clinic to identify the individual patient’s problems and create an individual program for recovery.
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| 8. |
- Almerud, Sofia, 1969-
(författare)
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Vigilance & Invisibility : Care in technologically intense environments
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This thesis focuses on the relationship between technology and caring in technologically intense environments. The overall aim was to uncover the meaning of care in those environments as experienced by patients and caregivers. Moreover, the study aimed at finding a deeper understanding for the almost total dominance of technology in care in intensive care. The thesis includes three empirical studies and one theoretical, philosophical study. The research was guided by a phenomenological and lifeworld theoretical approach. Research data consist of quantitative parameters and qualitative interviews with caregivers and patients. Data was analysed and synthesised with aim of seeking meaning through openness, sensitivity and a reflective attitude. The goal was to reach the general structure of the phenomenon and its meaning constituents. The result shows that an intensive care unit is a cognitive and emotionally complex environment where caregivers are juggling a precarious handful of cards. Despite being constantly monitored and observed, intensive care patients express that they feel invisible. The patient and the apparatus easily meld into a unit, one item to be regulated and read. From the patients’ perspective, caregivers demonstrate keen vigilance over technological devices and measured parameters, but pay scant attention to their stories and experiences. Technology, with its exciting captive lure and challenging character, seduces the caregivers and lulls them into a fictive sense of security and safety. Technical tasks take precedence or have more urgency than caring behaviour. A malaise settles on caregivers as they strive for garnering the security that technology promises. Yet simultaneously, insecurity creeps in as they read the patient’s biological data. Technical tasks take precedence over and seemingly are more urgent than showing care. Listening, inspiring trust, and promoting confidence no longer have high priority. Trying to communicate ‘through’ technology is so complex, that it is a difficult challenge to keep in perspective what or who is the focus; ‘seeing’ or caring. Technology should be like a catalyst; do its ‘thing’ and withdraw ‘unnoticed’. This thesis has contributed in gaining deeper knowledge about care in technologically intense environments and the impact of technology. The main contribution is that caregivers need to be aware that the roar of technology silences the subtle attempts of the critically ill or injured person to give voice to his or her needs. In conclusion, the challenges for caregivers are to distinguish when to heighten the importance of the objective and measurable dimensions provided by technology and when to reduce their importance. In order to magnify the patients’ lived experiences. It is a question of balancing state-of-the-art technology with integrative and comprehensive care, of harmonizing the demands of subjectivity with objective signs.
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| 9. |
- Arvidsson, Susann
(författare)
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Health promoting factors in people with chronic musculoskeletal pain or with rheumatic diseases: a descriptive and interventional study
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of this thesis with a salutogenic approach was to describe health promoting factors in people with chronic musculoskeletal pain and in people with rheumatic diseases, and to evaluate the effects of an intervention study with a self-care promoting PBL-program for people with rheumatic diseases having chronic musculoskeletal pain, sleep disturbances and/or fatigue. Methods: This thesis is comprised of four samples: a randomly selected sample from a Swedish general population (study I) and three different samples containing people with rheumatic diseases registered at a hospital for rheumatic diseases in the southwest of Sweden (studies II, III and IV). Study I had a longitudinal cohort design with an eight-year follow-up in a general population. There were 1109 participants without chronic pain and 700 participants with chronic musculoskeletal pain. Study II had a longitudinal cohort design with participants with rheumatic diseases (n=185) 12 months after rehabilitation at a hospital for rheumatic diseases. Study III had a descriptive qualitative design with a phenomenological approach based on a reflective life-world perspective. Twelve participants were interviewed about their experiences about health-promoting self-care. Study IV had a randomised controlled design with post-test six months after the one-year self-care promoting problem-based learning (PBL) program for people with rheumatic diseases. The participants were randomly assigned to the experimental group, 54 participants, or to the control group, 148 participants. Data in studies I, II and IV were analysed with statistics. In study III a Husserlian phenomenological approach based on a reflective life-world perspective was used in the data collection and analysis. Results: Study I: Although participants without chronic musculoskeletal pain reported better health-related quality of life (HRQL) than participants with chronic musculoskeletal pain, similar health factors were found to promote a better HRQL in the eight-year follow-up. The most important factors were feeling rested after sleep and having good sleep structure. Study II: The most important factors promoting better outcome in HRQL 12 months after rehabilitation in participants with rheumatic diseases were having a strong sense of coherence (SOC), feeling rested after sleep, having work capacity, and having good sleep structure. Study III: The meaning of health-promoting self-care as experienced by people with rheumatic diseases was that self-care takes place against a background of continual hope and belief to be able to influence health in positive ways. Self-care was a way of life and implied being ready to understand and respond to signals from the body. Three interrelated constituents elucidated the experiences: dialogue, power struggle and choice. Study IV: At the six month follow-up the participants in the experimental group had stronger empowerment after participation in the self-care promoting PBL-program compared with the control group which only got standard care for people with rheumatic diseases. There were no differences in HRQL, self-care ability, SOC, pain, quality of sleep or fatigue between the experimental group and the control group. The participants in the experimental group also stated that they had implemented lifestyle changes which they had not done without the PBL-program. Conclusion: The results of this thesis provide a valuable and useful insight in health promoting factors in people with chronic musculoskeletal pain and in people with rheumatic diseases, but also in that people with rheumatic diseases have benefit from taking part in patient education with a self-care promoting PBL-program. These results contribute to evidence supporting the introduction of a more salutogenic approach in rheumatology care and research.
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| 10. |
- Bergsten, Ulrika, 1966-
(författare)
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Patients' and healthcare providers' experiences of the cause, management and interaction in the care of rheumatoid arthritis
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of this thesis was to explore and describe patients’ and healthcare providers’ experiences of the causes, management and interaction in the care of rheumatoid arthritis (RA). Method: The thesis is based on four studies. Studies I and II contain data from an epidemiologic project involving patients who were recently diagnosed with RA. The patients answered an open-ended question about their conception of the cause of their RA (Study I). Qualitative data from 38 patients were analysed using the phenomenographic approach in order to identify variation in conceptions. The results of Study I formed the basis for categorizing the conceptions of 785 patients in the search for patterns of background factors (Study II). Study III aimed to explore how patients experienced their management of RA in everyday life. Data were collected by interviews with 16 patients and analysed according to Grounded Theory (GT). In study IV, the aim was to explore healthcare providers’ experiences of their interaction with patients’ management of RA. Data were collected by interviews with 18 providers representing different professions and analysed using GT. Findings: Patients’ conceptions of the cause of their RA revealed new aspects from the patient perspective that can complement pathogenetic models. Two descriptive categories emerged: consequences beyond personal control and overloaded circumstances, which included six categories of conceptions (Study I). The most common conceptions of the cause of RA were unexpected effects of events followed by work and family-related stress (Study II). Background factors that influenced the conceptions of the cause were age, sex and educational level. Patient management of RA involved using personal resources together with grasping for support from others in their striving for a good life. When linking these aspects together, four ways of management emerged: mastering, struggling, relying and being resigned (Study III). Healthcare providers’ experiences of their interaction with patients’ management shed light upon the important issue of delivering knowledge and advice. The providers’ attitudes constituted one cornerstone and patients’ responses the other. The providers reported that the interaction led to different outcomes: completed delivery, adjusted delivery and failed delivery. Conclusions: The findings contribute new knowledge from both patients’ and healthcare providers’ perspectives, which could be used to develop a more person-centred approach in rheumatology care. Person-centred care involves taking patients’ beliefs and values into account in addition to creating a trusting relationship between patient and provider. A successful person-centred approach requires an organisation that supports the person-centred framework.
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