To Örebro University

OBJECTIVE: To assess if activities of daily living (ADL), coping and quality of life could be improved in adults with muscular dystrophy through a comprehensive rehabilitation programme. DESIGN: Quasi-experimental, controlled clinical study comparing patients with similar age and disease aspects. SETTING: Two different counties in Sweden, being either study or control setting. SUBJECTS: The study group comprised 37 adults (21 women, 16 men; mean age 50 years), while the control group comprised 39 people (25 women, 14 men; mean age 46 years). INTERVENTIONS: Four rehabilitation sessions tailored to different medical, physical and psychosocial needs of the patients, comprising a total of 10 days over a period of 18 months. MAIN MEASURES: ADL, the Mental Adjustment to Cancer Scale measuring coping strategies, the Sickness Impact Profile measuring health-related quality of life, the Hospital Anxiety and Depression Scale, and the Psychosocial Well-being Questionnaire. RESULTS: No significant differences were found between groups with regard to the outcome measures. There was increased dependence on others in ADL after 18 months in both groups, but it was more pronounced in the control group. Furthermore, a clear trend was observed in the data with regard to coping patterns, the control group using more coping strategies such as 'Helplessness/hopelessness' (P= 0.057), 'Anxious preoccupation' (P = 0.085) and 'Fatalistic' (P= 0.073) when being compared to the study group. CONCLUSIONS: No apparent effects on ADL were found from the rehabilitation programme, although there was a tendency of reduction of maladaptive coping patterns in the study group. This initial study may provide the rationale and basis for a randomized controlled trial.

Few researchers have described postoperative recovery from a broad, overall perspective. In this article the authors describe a study focusing on patient and staff experiences of postoperative recovery using a qualitative descriptive design to obtain a description of the phenomenon. They performed 10 individual interviews with patients who had undergone abdominal or gynecological surgery and 7 group interviews with registered nurses working on surgical and gynecological wards and in primary care centers, surgeons from surgical and gynecological departments, and in-patients from a gynecological ward. The authors analyzed data using qualitative content analysis. Postoperative recovery is described as a Dynamic Process in an Endeavour to Continue With Everyday Life. This theme was further highlighted by the categories Experiences of the core of recovery and Experiences of factors influencing recovery. Knowledge from this study will help caregivers support patients during their recovery from surgery.

Aim. This papaer presents a concept analysis of the phenomeneon postoperative recovery.

Background. Each year, millions of patients throughout the world undergo surgical procedures. Although postoperative recovery is commonly used as an outcome of surgery, it is difficult to identify a standard definition.

Method. Walker and Avant's concept analysis approach was used. Literature retrieved from MEDLINE and CINAHL databases for english language papers published from 1982 to 2005 was used for the analysis.

Findings. The theoretical definition developed points out that postoperative recovery is an energy-requiring process of returning to normality and wholeness. It is defined by comparative standards, achieved by regaining control over physical, psychological, social and habitual functions, and results in a return to preoperative level of independence/dependence in activities of daily living and optimum level of psychological well-being.

Conclusion. The concept of postoperative recovery lacks clarity, both in its meaning in relation to postoperative recovery to healthcare professionals in their care for surgical patients, and in the understanding of what researchers in this area really intend to investigate. The theoretical definition we have developed may be useful but needs to be further explored.

Few researchers have described postoperative recovery from a broad, overall perspective. In this article the authors describe a study focusing on patient and staff experiences of postoperative recovery using a qualitative descriptive design to obtain a description of the phenomenon. They performed 10 individual interviews with patients who had undergone abdominal or gynecological surgery and 7 group interviews with registered nurses working on surgical and gynecological wards and in primary care centers, surgeons from surgical and gynecological departments, and in-patients from a gynecological ward. The authors analyzed data using qualitative content analysis. Postoperative recovery is described as a Dynamic Process in an Endeavour to Continue With Everyday Life. This theme was further highlighted by the categories Experiences of the core of recovery and Experiences of factors influencing recovery. Knowledge from this study will help caregivers support patients during their recovery from surgery.

Aims and objectives. In this study we describe the development of a short, easy-to-use questionnaire to measure postoperative recovery and evaluate its content validity and intra-patient reliability.   The questionnaire is designed to evaluate the progress of postoperative recovery and the long-term follow-up of possible effects of interventions during recovery.

Method. The study involved four steps. 1) A conceptualisation and item definitions were based on a theoretical framework and a description of patients' postoperative recovery from the perspective of patients, registered nurses and surgeons. 2) Content validity of items was tested through expert judgements. 3) A test run of the questionnaire was performed to confirm its feasibility and workload requirement. 4) The stability of the questionnaire was evaluated through intra-patient reliability assessment.

Results. As a result of the operationalisation process of the concept postoperative recovery, five dimensions (physical symptoms, physical functions, psychological, social, activity) and 19 items were identified. Each item was formulated as a statement in the questionnaire. Content validity was judged to be high. After the pre-test of the questionnaire a revision with refinements in the layout was made. The vast majority of items showed a high level of intra-patient reliability.

Conclusion. Based on a theoretical framework and empirical data, we developed a short and easy-to-use tentative questionnaire to measure patient-reported postoperative recovery. Initial support for content validity was established. The vast majority of items showed a high level of test-retest reliability.

Background. The previously developed Postoperative Recovery Profile (PRP) questionnaire is intended for self-assessment of general recovery after surgery. The aim of this study was to further evaluate the questionnaire regarding the construct validity and ability to discriminate recovery profiles between groups. Furthermore, the item variables of greatest importance during the progress of recovery were investigated.

Methods. Postoperative recovery was assessed during the period from discharge to 12 months after lower abdominal- and orthopedic surgery. Construct validity was evaluated by comparing the assessments from the PRP-questionnaire and a global recovery scale. Recovery profiles of the diagnose groups were displayed by the cumulative proportion recovered participants over time. The importance of item variables was investigated by ranking ordering.

Results. A total of 158 patients were included. The result showed that 7.6 % of all possible pairs were disordered when comparing the assessments from the PRP questionnaire and the global recovery scale. Twelve months after discharge 51 % participants in the abdominal group were fully recovered, as compared with the 73%, in the orthopedic group (95% CI: 6 % to 40 %). The item variable pain appeared as top five at eight measurement occasions of eight possible in both the abdominal and the orthopedic groups. The importance of the items was emphasized.

Conclusions. The PRP questionnaire allows for evaluation of the progress of postoperative recovery, and can be useful to assess patient-reported recovery after surgical treatment. Knowledge about recovery profiles can assist clinicians in determining the critical time points for measuring change.

OBJECTIVE:

To investigate the prevalence of urinary incontinence in a representative population in Sweden, and to assess to what extent the condition affects daily life and to what degree those afflicted desire treatment.

MATERIAL AND METHODS:

In a population-based study, a postal questionnaire comprising 12 questions on urinary incontinence was sent to a representative sample of 15 360 randomly selected residents (aged 18-79 years) of Orebro County, Sweden. This was a supplement to a comprehensive survey of public health and general living conditions.

RESULTS:

The response rate was 64.5%. The prevalence of urinary incontinence was 19% when defined as "any leakage" and 7% when defined as "at least once a week". Women were more afflicted than men, and the proportion of people with urinary incontinence increased markedly with increasing age. Most considered their problems to be minor, having little impact on daily life, which was reflected by the fact that only 18% of those with urinary incontinence desired treatment. About 17% of those with urinary incontinence reported severe problems that interfered with daily life. Of respondents with severe problems, 42% did not want treatment.

CONCLUSION:

According to this population-based study, urinary incontinence is not a major problem for most people in the community. Although a considerable proportion of the population report urinary incontinence, the majority experience minor problems and only 18% desire treatment. For a limited group of people, urinary incontinence is a severe problem. It is important that healthcare resources are optimized to identify and meet the needs of those who are most afflicted.

OBJECTIVE: To investigate why persons with urinary incontinence (UI) refrain from seeking care and treatment.

MATERIAL AND METHODS: A population-based study was undertaken in which a public health survey and a specific UI questionnaire were sent to 15 360 randomly selected residents (age 18-79 years) of Orebro County, Sweden. For all persons reporting UI, the expressed wish for treatment or no treatment was analyzed in relation to relevant variables from both inquiry forms using binary logistic regression analysis.

RESULTS: The response rate was 64.5%. UI was reported by 2194 persons, 1724 of whom comprised the study population. A statistically significant association was found between the degree of UI and a desire for treatment. Persons who did not experience daily leakage and those who did not perceive the leakage as troublesome or having an affect on their daily life mostly stated that they did not desire treatment. Socioeconomic or other health-related factors were not associated with desiring or not desiring treatment for UI.

CONCLUSIONS: Our results show that it is the perceived severity of UI that determines whether afflicted persons desire treatment or not. Other factors, relating to seeking healthcare in general, were not found to be of importance. Interventions to identify those in need of treatment for UI should primarily be directed towards those with severe symptoms.

OBJECTIVE: The aim of this study was to describe general characteristics of patients with stroke who have a tendency to fall and to determine whether certain test instruments can identify fallers. METHODS: Patients treated in a stroke unit during a 12-month period were included. At inclusion assessments were made with Berg Balance Scale Berg Balance Scale, Stops Walking When Talking, Timed Up & Go (TUG) and diffTUG. At follow-up 6 or 12 months later, patients who had fallen were identified. RESULTS: During the time from discharge to follow-up on 159 patients, 68 patients fell and 91 did not. Fallers fell more often during their initial hospital stay, used sedatives more often and were more visually impaired, compared with non-fallers. The Berg Balance Scale, Stops Walking When Talking and TUG results differed between fallers and non-fallers. The combined results of Berg Balance Scale and Stops Walking When Talking increased the possibility of identifying fallers. CONCLUSION: Berg Balance Scale, Stops Walking When Talking and TUG can be used to evaluate which patients have a tendency to fall in order to carry out preventive measures. Berg Balance Scale can be used in all patients. Stops Walking When Talking can give additional information if the patient is able to walk. TUG is a possible choice, but fewer patients can perform it.

Objectives – Head injury is an important health problem all over the world. Previous studies have shown that peripheral hearing impairment (HI) is a common sequel of closed head injury (CHI), but in most cases it will subside within the first posttraumatic months. However, in some cases, the HI persists and in other cases there can even be progress. The objective of the present study was to analyse long-term audiologic and cognitive consequences of CHI.

There were four main issues:

1. To study the presence and progress of sensorineural hearing loss (SNHL) after CHI and whether prediction of progress is possible. Autoimmunity as a possible cause of progress is also investigated, and the question of sympathetic cochleolabyrinthitis is discussed.

2. To study the presence of central auditory processing disorders (CAPD) after CHI; the question of a King-Kopetzky syndrome should be discussed.

3. To study the presence of cognitive impairments.

4. To evaluate self-assessed hearing, cognition and quality of life from a long-term perspective.

Material and methods – During a period of 14 years, around 2000 patients with head injuries were admitted to the emergency ward at Lindesberg County Hospital and Örebro Medical Centre Hospital. Six hundred subjects suffered from skull fracture and/or brain contusion and diagnosis was established using a computed tomography scan (CT). The degree of initial brain injury was estimated using the Swedish Reaction Level Scale (RLS). Sixty-six subjects were investigated with pure tone audiometry in close proximity to the trauma, and this gave an opportunity to study the issue of progress. The investigation took place two to 14 years after trauma, and the results were compared to matched control groups. A battery of different audiological methods was used to investigate peripheral and central auditory function, and a specially designed acoustic environmental room was also utilized. Cognition was investigated using a computer-based test-battery, text information process system (TIPS). Self-assessed hearing, cognition and quality of life were explored using different questionnaires.

Results – A high percentage of peripheral and central auditory impairments and also cognitive shortcomings were demonstrated. Progress of SNHL was a common finding, and fracture, high age at trauma and large initial hearing loss predicted progress. Antibody-mediated autoimmunity as a mechanism behind posttraumatic progress of SNHL or clear evidence for sympathetic cochleolabyrinthitis could not be demonstrated. Binaural auditory deficits could be demonstrated when tested in a realistic acoustic environment. Tinnitus, vertigo and memory shortcomings proved to be common sequelae, even in a long-term perspective

Cognitive shortcomings were found in several of these well-rehabilitated subjects.

On a group level, there was a good correlation between self-assessments and audiometric results, even if some individuals had a tendency to over- or underestimate their abilities.

Conclusion – Auditory and cognitive long-term sequelae of CHI are a common finding even in well-rehabilitated and socially well-functioning subjects, as are vertigo and tinnitus. Vertigo and tinnitus are also common sequelae after CHI, therefore a basic audiovestibular investigation after CHI is recommended, at least in selected cases.

Early awareness of the risk for hearing and cognitive sequelae after CHI could lead to measurements taken to prevent tension-related symptoms.

Early detection of HI offers an opportunity to try immunosuppressive treatment in cases with a large initial SNHL.

Sensorineural hearing impairment is a common sequel to closed head injury (CHI). In most cases, the impairment subsides within the first post‐traumatic year; in some cases the impairment is permanent and in other cases there will be progress. In most cases the reason for progress is unknown. Substantial research has been carried out to ascertain the aetiology of sudden sensorineural hearing loss (SNHL) and Menière's disease. A number of studies have demonstrated the presence of antibodies against HSP 70 antigen in patients' sera. In accordance with this finding, autoimmunity as an aetiological factor for progressive SNHL has been proposed. There are reports indicating that trauma is a possible mechanism for eliciting an autoimmune response, and the aim of the present study is to study this mechanism. The question of sympathetic cochleolabyrinthitis is highlighted. Sera from 35 subjects with a history of closed head injury three to 13 years prior to the investigation were obtained for Western blot immunoassay in an attempt to identify HSP 70 antibodies. Twenty‐seven of the subjects demonstrated progress of a sensorineural hearing impairment after CHI. Two of 35, both with progress of a SNHL, demonstrated presence of anti‐HSP 70 antibodies. Therefore, a significant role of an HSP 70 related autoimmune mechanism for SNHL progress post CHI could not be confirmed in the present study. Nevertheless, the possible role of autoantibodies in individual cases cannot be ruled out, neither can the presence of other transitory autoimmune reactions after CHI. No conclusive evidence of sympathetic cochleolabyrinthitis was found.

Objectives-To evaluate the prevalence of progression of closed head injury (CHI)-induced hearing impairment, defined as greater than or equal to 15 dB HL deterioration at 1 or more frequencies, and to identify risk factors in patient history and initial status that could predict progression.

Material and Methods-A total of 600 patients with major CHI were admitted to 2 Swedish medical centres during a 14-year period. The type of injury was established by means of CT and the severity of head injury was measured using the Swedish Reaction Level Scale (RLS). In 62 of these patients, pure-tone audiometry was performed soon after the injury. Forty-three patients agreed to participate in the present investigation, which was carried out 2-13 years after the injury. Each participant was evaluated using pure-tone audiometry and an itemized anamnesis was obtained.

Results-There was a higher prevalence of hearing impairments in the study group compared to a control group. Thirty-two subjects (74%) showed a progression of greater than or equal to 15 dB, which was significantly greater than the spontaneous progression in the control group. Age and temporal bone fracture were risk factors for progression but not brain contusion only or RLS. There was an association between early pure-tone average (PTA) and progression as well as regression, i.e. the poorer the initial PTA the greater the progression as well as regression, indicating increased instability in the auditory system. Examination of patient histories did not reveal any single risk factors for progression. A serendipitous finding was a higher prevalence of reported memory shortcomings among those with post-traumatic tinnitus.

Conclusion-Especially for those with fracture of the temporal bone the present results stress the importance of audiometric evaluation and follow-up, from both rehabilitation and medicolegal perspectives

During a period of 5 years, a total of 47 patients, 16-60 years of age, with major closed head injury (CHI) were admitted to 2 Swedish medical centres. Seven to 11 years after injury, 25 of them (mean age 40.8 years; range 25-59 years) were evaluated using peripheral and central auditory tests, and most of them also completed 2 questionnaires concerning self-assessed hearing ability and quality of life. Twenty-two patients did not participate in the long-term follow-up tests: 15 were excluded for medical reasons and 4 did not wish to participate; an additional 2 were impossible to trace and 1 had died. As many as 68% of patients (17/25) demonstrated abnormalities on 1 or more of the audiometric tests, 14 on pure-tone audiometry (p < 0.02) and/or central audiometric tests (3 on central tests only and 2 on pure-tone audiometry only). Four out of six patients with available early post-traumatic audiograms showed a significant progressive deterioration. As a group, their assessments of hearing ability and quality of life were equal to or better than those of the controls. These results may indicate that a higher priority should be given to obtaining an early audiologic evaluation of every CHI patient than is the rule today. The impact of post-traumatic progress and central lesions on social hearing at an advanced age is highlighted.

The purpose of the present study was to examine possible signs of long-term cognitive and/or central auditory sequelae seven to eleven years after a closed head injury (CHI) of sufficient severity to cause scull fracture and/or brain contusion. Another purpose was that this investigation should be carried out in a group of recovered trauma victims with, to the individual, no known or minimal sequelae. A computer-based set of five cognitive tests and three central auditory tests were used in a group of formerly brain-injured patients who considered themselves as well recovered. Most of the participants did not report any signs of cognitive or auditory impairment. Tests of working memory capacity, verbal information processing speed, phonological processing and verbal inference-making ability were used. Auditory brain response (ABR), distorted speech audiometry (interrupted speech), and phase audiometry were used to test central auditory function. The initial severity of brain damage, i.e. status when the patient arrived at the emergency ward, was estimated with Swedish Reaction Level Scale (RLS). Cognitive shortcomings after CHI were demonstrated in a high percentage (59%, 13/22) of the cases seven to eleven years after the injury. Central auditory processing disorders (APD) were also demonstrated in a fairly high percentage (58%, 11/19) of the subjects. None of the correlations between RLS and the results on cognitive and central auditory tests reached statistical significance. However, there was a correlation between cognitive performance and the results on the central auditory tests used in this investigation. Eighty percent (8/10) of those participants with pathologies on ABR and/or phase audiometry and/or IS also failed on one or more of the cognitive tasks, compared to 44% (4/9) among those with no signs of APD. It is possible, many years after CHI, to observe cognitive shortcomings and APD in a relatively high percentage of CHI cases that are subjectively considered to be fairly well recovered. The cognitive tasks used in the study have proved to be a sensitive method to discover cognitive impairments. Long-term cognitive sequelae and APD could not be predicted from RLS scores.

Objective: The aim of the study is to investigate the manner in which women who choose not to participate in a population-based cervical cancer screening program (PCCSP) reason about their decision.

Method: All women between 23 and 60 years of age, residing in Stockholm county council receive an invitation from the regional Oncological Center (OC) to attend PCCSP at regular intervals. Women who actively contacted OC to report that they do not wish to participate in PCCSP were the subjects for the study. Data was collected through unstructured telephone interviews with 11 women and fax messages from 86 women. Data analysis is inspired by interpretive description.

Results: Preliminary analysis indicates that two salient themes are related to the division of responsibility for health maintenance between the individual and society, as well as the manner in which women described being able to 'know' one's own body. Descriptions include not wanting to know if one has cancer, previous negative experiences in relation to screening that led to feeling self-exposed and insulted, beliefs that a healthy lifestyle could protect one from cancer and a standpoint that the screening program represents undesired societal control of private issues. A relationship with one's own gynaecologist was described as important and as one reason for not attending PCCSE Reasoning was also influenced by conceptualizations of sexuality.

Conclusion: Cervical cancer screening can be viewed as a relatively simple routine check-up, but for the individual woman it may also involve a sensitive situation, with both the risk of a life-threatening sickness and an intimate physical examination. In order to improve PCCSP, it is important to highlight different perspectives on screening, and perspectives from women who have chosen not to attend are essential.

The overall aim of this thesis was to elucidate haw persona with muscular dystrophy (MD) and their next of kin experience and describe their daily lives over the last ten years. MD is a group of inherited disorders characterised by muscular weakness caused by muscle wasting. Both qualitative and quantitative methods were used. Forty-isx individuals with MD and 36 next of kin were interviewed (Studies I, III, IV). Both groups completed the questionnaire Subjective Quality of Life (SQoL), (Study V). Persons with MD also completed the questionnaires Sickness Impact Profile and Self-report ADL (Study II). The interviews were subjected to qualitative content analysis. The persons with MD described the change from being independent to being an individual in need of assistive devices and/or personal support to manage activities of every day life (StudyI). Besides muscular weakness persons with MD have hte strain it means to have a hereditary disease, which also affects the family (Study III). The deterioration during a decennium was primarily with regard to ambulation. The number of persons walking without assistive devices has decreased from 40 to 23 and that of those working has almost been halved, from 21 to 11 (Study II). Next of kin have a special vulnerability in form of an emotional and practical lonliness in addition to actual and anticipatory losses. The relationship was described as related to obligation and/or love. To have an orientation towards tasks (obligation) was linked to a feeling of being weighed down by demands, while having an orientation towards relationship (love) was linked to a feeling of quality in life (Study IV). The persons with MD scored lower on most items in the SQoL than the next of kin (Study V). Patients without a partner scored lower on QoL as a whole than those with a partner. Those with an early onset of disease scored lower on personal economy. Next of kin who gave daily help assessed their relationships to friends lower than those who gave weekly help (Study V). This thesis provides knowledge of the trajectory with MD over time on the basis of a ten-year follow up. It also broadens the knowledge of how the hereditary aspect is experienced both by those with MD and their next of kin. How the next of kin of adult persons with MD experience their situation is an issue that has been overlooked in previous research.

Purpose: The aim of the study was to elucidate experiences of living with muscular dystrophy in terms of consequences for activity over 10 years. Methods: The study population was identified in a prevalence study in a county of Sweden. Forty-six persons of this cohort with MD were interviewed. A qualitative research approach was chosen. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) was used for categorization. Results: Nearly all the subjects experienced a deterioration of physical capacity. Most obvious were the restrictions on mobility and increased fatigue and feebleness. The persons described psychosocial consequences of the muscular dystrophy as well as stigma when the disability had become more obvious. In spite of reported distress several persons experienced better psychological adaptation over time. The image of the future was often dark but several focus on today and avoid thoughts about the future. ICF showed some limitation with regard to temporal aspects, emotions and the subjective perspective. Conclusions: The knowledge of the trajectory with MD is important in order to offer the best possible treatment and support. Repeated assessment by ICF can serve as a valuable source of such knowledge, and a development of the classification would increase its usefulness in future analysis of functioning and disability.

This qualitative study describes conceptions and experiences of the hereditary aspect of muscular dystrophy (MD) from both the patients' and the next of kin's perspective. Different diagnoses of MD are included: dystrophia myotonica, myopathia distalis tarda hereditaria, Becker MD, facioscapulohumeral MD, limb-girdle MD, Emery-Dreifuss and undetermined proximal MD (Duchenne MD is not included). Interviews were conducted with 46 persons with MD and 36 next of kin. The interviews were subjected to inductive content analysis. Only two in each group did not spontaneously mention anything related to the fact that MD is disease with dominant or recessive inheritance. It was found that heredity has a prominent place in the thoughts and feelings of the family. These thoughts were classified as Becoming aware of MD and its hereditary nature, looking into the pedigree, acquiring an understanding of MD, thoughts about genetic testing, interpreting the risk, whether to have children or not, feelings related to the future, and feelings of responsibility and guilt. Families with MD need medical information and the opportunity for genetic testing as well as support and counseling in coming to terms with living with a hereditary disease, whether or not that includes a decision to take a test.

The aims of this study were to investigate quality of life (QoL) among adult patients with muscular dystrophy (n=46) and their next of kin (n=36) and to investigate the influence of disease-related and demographic factors on QoL. The questionnaire 'Subjective estimation of quality of life' was used. The results show that patients had lower QoL than their next of kin regarding having no work or meaningful occupation, energy, self-assuredness, self-acceptance and emotional experiences. Age of onset of disease had an impact on QoL. The need for a ventilator had an influence only on assessment of energy. Patients without a partner assessed lower than those who had a partner. In the case of a person who is young and single the onset of muscular dystrophy reduces the likelihood of having a partner or children and affects personal economy negatively. Assessment of relationship to friends was lower among next of kin who provided daily help than among those who provided help once a week. There is a need for recurrent rehabilitation during life-long disabilities and a need to give particular support to those with early onset of disease, those who are single and those who are childless. It is also important to include the patient's close relations when giving rehabilitation.

OBJECTIVE: To describe changes of function in terms of sickness impact over 10 years in adult patients with different types of muscular dystrophy. DESIGN: Patients with muscular dystrophy answered the Sickness Impact Profile and Self-report ADL questionnaires in 1991 and 2001. SETTING: The study population was identified in a comprehensive prevalence study in the county of Orebro, Sweden. SUBJECTS: The study group comprised 44 people grouped according to whether they had myotonic dystrophy or muscular dystrophy with proximal or distal muscles affected. MAIN MEASURES: Comparison was made between assessments of sickness impact in terms of function at the two time points. RESULTS: Most obvious deterioration over time was in activities of daily living that require finger and arm strength. Ambulation was significantly decreased in myotonic dystrophy and proximal muscular dystrophy. Those walking without assistive devices decreased from 91% to 52%, and the number with a disability pension increased from 36 to 55%. There was a relatively small influence with regard to psychosocial dysfunction assessed by the Sickness Impact Profile. CONCLUSIONS: This longitudinal study shows the deteriorating functions reported by patients with muscular dystrophy. This knowledge could be used to formulate new interventions in order to offer appropriate support and treatment to this patient group.

OBJECTIVES - Hearing impairment (HI) can be due to genetic or environmental factors, e.g. noise. More than 50% of HI cases are thougt to be hereditary. HI can affect social participation in different ways. How serious these problems becomes depends on several factors, for example, the type of social environment the person lives in. The objective of the present study was to point out the importance of studying HI and deafness in a broad perspective, from the molecular - biological level to the psychological - social level and to evaluate how interactions of factors at several levels form the consequences, in a long-term perspective, to witch HI and deafness can lead. MATERIAL AND METHODS - Three different study populations have been used to study the four levels in this study: Papers I - III; 1200 noise-exposed workers (molecular and biological levels), Paper IV; 50 persons with HI since early childhood, with or without a family history of HI (FHHI)(biological, psychological and social level), and in Paper V; 600 persons with early onset of deafness in two counties with differently strong Deaf communities (psychological and social level). RESULTS - The molecular genetic studies (Papers I – III) showed that the combination of smoking and having a mutation in the protective antioxidant system revealed an additional risk for noise induced hearing loss. In Paper IV, only small differences was found between subjects with and without a FHHI. The results in Paper V indicated that differences in the social environment, in terms of the strength of the Deaf community, influence family factors such as marriages, divorces and the number of children born. CONCLUSIONS - Analysing complex issues such as HI and deafness from a medical audiological perspective requires a multi- level approach at several levels. The results indicate that interactions of factors at all four levels form the consequences, in a long-term perspective, to wich HI and deafness can lead. Furthermore, this multi-level approach - here called a clinical audiological approach - is essential when using the ICF framework in audiological rehabilitation/habilitation.

Although it seems that genetic factors can influence individual susceptibility to noise, still very little is known about the genes or the mechanisms involved. The connexin 26 (Cx26) (GJB2) gene is of particular interest to study in relation to noise, since the gene encodes the gap junction protein Cx26. Noise has a metabolic and mechanical effect on the inner ear and may, therefore, interfere with gap junction channels. In order to investigate whether abnormally high susceptibility to noise induced hearing loss (NIHL) in humans is associated with the common 35delG mutation in the Cx26 gene, 1200 noise‐exposed workers were investigated in Sweden. Using a selection procedure based on audiometric analysis, noise exposure data and questionnaires, noise‐exposed workers were divided into two categories: noise susceptible and noise resistant. There was a correspondence in noise susceptibility between this noise‐exposed population and the international reference ISO Standard 1999. Blood samples were drawn from 245 highly selected male subjects (103 noise susceptible, 112 noise resistant and 30 randomized cases), and genomic DNA was analysed with respect to the Cx26 35delG mutation. The incidence of 35delG carriers among this cohort was determined by multiplex, allele‐specific PCR. Two of the 245 subjects (0.8% ‐ [95% confidence interval 0.1–2.9]) were found to be heterozygous carriers of the 35delG mutation, while the remaining 243 subjects were all non‐carriers. Both the heterozygous carriers were found in the noise susceptible group. Statistical evaluation of the results demonstrated no significant difference in carrier incidence between the noise susceptible and noise resistant individuals in our Swedish noise‐exposed population. In conclusion, there was no support for a major role of Cx26 35delG mutation in explaining the variability in noise susceptibility in this Swedish population.

Deafness affects many social interactions. The impact of deafness depends on several factors, e.g., the type of social environment in terms of the particular Deaf community a person lives in. The authors recorded the birthrate and the proportions of married and divorced people among deaf people in two Swedish counties: Narke, which had a strong Deaf community, and Varmland, whose Deaf community was weak. In both counties, the authors found that deafness was associated with low marriage rates and low birthrates. Further, in Narke, 99% of the people in the sample were married to another deaf person; only 10% were in Varmland. In Narke, the divorce rate among deaf people was about the same as that of the reference population (i.e., the county's marriage-age population). In Varmland, deaf people had a relatively low divorce rate. The findings are discussed from medical and social perspectives.

The aim of this study was to investigate the decision process and to analyse the mechanisms involved in the transition from upper secondary education to post-secondary education or the labour market. Sixteen students with sensorioneural hearing loss were selected. Among these eight of the students continued to university and eight did not. Twenty-five per cent of the students were women and the average age was 28 years. The investigation was conducted about 5 years after graduation from the upper secondary school. Both quantitative and qualitative methods were used. The results showed that none of the students came from a family where any or both of the parents had a university or comparable education. The differences in choice between the two groups cannot be explained in terms of social inheritance. Our study indicates that given normal intellectual capacity the level of the hearing loss seems to have no predictive value regarding future educational performance and academic career. The conclusion is that it is of great importance that a hearing impaired pupil with normal intellectual capacity is encouraged and guided to choose an upper secondary educational programme which is orientated towards post-secondary education (instead of a narrow vocational programme). Additional to their hearing impairment and related educational problems, hard of hearing students have much more difficulty than normal hearing peers in coping with changes in intentions and goals regarding their educational career during their upper secondary education.

According to Swedish laws and regulations, registered nurses are required to document nursing care in the patient's record. In this exploratory study, nurses were asked to describe how they made their nursing records. The nursing process model was used as a framework. The findings show that a system for admission assessment was fairly common, regarding objectives and a nursing care plan together with a nursing discharge note; more than half of the wards studied recorded these aspects at least occasionally. Nursing diagnoses were seldom recorded in practice. The results reveal serious limitations and deficiencies in the practice of nursing documentation and the implementation of current laws and regulations. This underlines the importance of emphasizing nursing knowledge and nursing documentation in nursing training and practice.

Purpose: To evaluate completeness, granularity, multiple axial content, and clinical utility of the beta version of the ICNP in the context of standardized nursing care planning in a clinical setting.

Methods: An 35-bed acute care ward for infectious diseases at a Swedish university hospital was selected for clinical testing. A convenience sample of 56 patient records with data on nutrition and skin care was analyzed and mapped to the ICNP.

Findings: Using the ICNP terminology, 59%-62% of the record content describing nursing phenomena and 30%-44% of the nursing interventions in the areas of nutrition and skin care could be expressed satisfactorily. For about a quarter of the content describing nursing phenomena and interventions, no corresponding ICNP term was found.

Conclusions: The ICNP needs to be further developed to allow representation of the entire range of nursing care. Terms need to be developed to express patient participation and preferences, normal conditions, qualitative dimensions and characteristics, nonhuman focus, and duration.

Practice implications: The practical usefulness of the ICNP needs further testing before conclusions about its clinical benefits can be determined.

A review of 106 nursing records from 12 wards was conducted to categorize and quantify the content of the documentation and to consider the comprehensiveness of the recording for individual nursing problems. Audit instruments, based on a model for nursing documentation were developed and applied. The results show that admission assessment was missing in slightly less than half of all records, two-thirds had no nursing care plan and about one-third had no documentation on nursing outcome. About 90% of the records had no nursing diagnosis, no objective or no nursing discharge note. Notes on nursing status and nursing interventions were most common. Only one-third of the nursing problems identified had recording that gave information about the progress of the patient's problem. The analyses performed give information on the quality of nursing records which may be used to evaluate the quality of nursing care.

Four key concepts for good nursing care and a list of key words for nursing documentation in patient records were established and to some extent tried in clinical practice in Sweden. The method consisted of the following steps: extensive literature review, review of nursing records, development of a list of key words on two levels, a first level corresponding to the nursing process, and a second level consisting of subdivisions for possible use in practice, use and assessment in clinical practice by nurses and students, expert panel judgement and refinement of the key words including an examination of semantic accuracy of the Swedish key words by an expert in Nordic languages. The proposed key words are presented both in English and Swedish and explanations, comments and references are given. The version of key words presented here is subject to further testing for possible modifications.

Purpose: To describe the main problems, needs, risks, and nursing diagnoses and to examine the descriptions of some common and serious patient problems in nursing home records.

Methods: A retrospective audit of a stratified, random sample (N = 12O) of patient records from eight nursing homes in six Swedish municipalities.

Findings: Results showed major deficiencies in nursing documentation in the patient records. Only one record contained a comprehensive description of one patient problem that corresponded to the requirements of Swedish laws and regulations. No record was found that contained a systematic and comprehensive assessment of any of the selected problems based on established criteria or the use of an assessment instrument.

Conclusions: Nursing documentation in patient records does not reflect the use of systematic assessment and research-based instruments for determining patient care needs. Nurses need skills in assessment in the care of the elderly to be able to set priorities in care and deliver adequate care.

The purpose of this study was to describe the effects on the contents and comprehensiveness of the nursing-care documentation in the patient records at nursing homes following an educational intervention. A review was made of records (n = 120) from nursing homes in six Swedish municipalities, allocated to a study group and a reference group. All the nursing home nurses in three municipalities received education concerning the nursing process and how to document according to the VIPS model. A retrospective audit of all nursing notes in the records from the nursing homes was made before and after the intervention. Improvements were found in the contents of the records in the study group. The number of notes on nursing history more than doubled. The occurrence of the recording of nursing diagnoses, goals and discharge notes increased. No corresponding changes were observed in the reference group. In the study group, an increase in the number of acceptable notes with contents on nursing history, status, nursing diagnosis, planned and implemented interventions, and nursing discharge notes was found. This increase was significant. The comprehensiveness in the documentation of single nursing problems was only slightly improved in the study group. No record met the requirements of the national regulations on nursing documentation or followed the nursing process thoroughly.

Data from patient records will increasingly be used for care planning, quality assessment, research, health planning and allocation of resources. Knowledge about the accuracy of such secondary data, however, is limited and only a few studies have been conducted on the accuracy of nursing recording. The aim of this study was to analyse the concordance between the nursing documentation in nursing homes and descriptions of some specific problems of nurses and patients. Comparisons were made between wards where nurses had received training in structured recording based on the nursing process (study group) and wards where no intervention had taken place (reference group). Data were collected from the patient records of randomly selected nursing home residents (n=85). The methods used were audits of patient records and structured interviews with residents and nurses. The study revealed considerable deficiencies in the accuracy of the patient records when the records were compared with the reports from nurses and residents. The overall agreement between the interview data from nurses and from the patient records was low. Concordance was better in the study group as compared with the reference group in which the recorded data were structured only following chronological order. The study unequivocally demonstrates that there are major limitations in using records as a data source for the evaluation, planning and development of care.

Background: Older patients with chronic heart failure constitute a large group within community home care that is at high risk for re-hospitalization. However, hospital readmission can be prevented if early signs of deterioration are recognized and proper interventions applied.

Aims and objectives: The aim of the study was to audit nursing care for older chronic heart failure patients within the Swedish community health care system.

Design: The study adopted a retrospective descriptive design.

Methods: In a Swedish urban municipality nursing documentation from 161 records on patients diagnosed with chronic heart failure was collected retrospectively from community nursing home care units. Patient records were reviewed for characteristics of nursing care and assessed for comprehensiveness in recording.

Results: The main results showed that medical care of patients with chronic heart failure was poorly recorded, making it possible only to follow fragments of the care process. The nursing notes showed poor adherence to current clinical guidelines. Only 12% of the records contained notes on patients' body weight and only 4% noted patients' knowledge about chronic heart failure. When interventions did occur, they largely consisted of drug administration.

Conclusions: The findings revealed flaws in the recording of specific assessment and interventions as well as poor adherence to current international clinical guidelines.

Relevance to clinical practice: Supportive guidelines available at the point of care are needed to enhance proper community-based home health care for older patients with chronic heart failure.

The objective of this paper is twofold: (a) to explore different approaches in reviewing records based on a literature review of studies of audits of patient records and (b) to apply these approaches on a sample of records to illuminate consequences of their application. The method used was a literature review of papers on recording of nursing care (n = 56). Based on our findings, an audit of a stratified sample of records (n = 298) from Swedish community health care and nursing homes was performed, applying the different approaches for auditing previously described in the literature. The review showed that audits of patient records were performed using four different approaches with varying aims. The focus of the four approaches can be described as formal structure, process comprehensiveness, knowledge-based and concordance with actual care. The results of this study suggest that audits of patient records should not be solely limited to encompass the formal structure of recording. To avoid a superficial picture or a false sense of high quality and to obtain a more complete and reliable portrait of the quality of recording, we suggest the process comprehensiveness approach in combination with a critical review of the knowledge base for the assessment, diagnosis and interventions of patient records.

The VIPS model for the documentation of nursing care in patient records was scientifically developed and published in 1991, with the aim of supporting the systematic documentation of nursing care and promoting individualized care. As the model seemed to be accepted and used in many parts of Sweden, a study was conducted in order to gather further information on the validity of the model, to describe the clinical and educational experience of its use and to refine it. Experience of the use of the model was gathered from a review of the scientific papers and other reports on it, from questionnaires addressed to nurses (n = 514), from comments by key informants, and from interviews with faculty members at all the nursing schools in the country. The findings showed that an intense process of change and development was occurring regarding nursing documentation. However, there were limitations in the use of the entire nursing process, especially in the specification of patient problems and the formulation of nursing diagnoses and nursing interventions. The keywords (Swedish spelling) of the VIPS model had good content validity in different areas of nursing care. The findings also indicated the need for further elaboration and revision of some of the keywords. A revised version of the VIPS model based on these findings is presented.

Aims: To evaluate the feasibility of a nurse-monitored, outpatient-care program for elderly patients previously hospitalized with chronic heart failure.

Methods and results: Patients with chronic heart failure hospitalized in the medical wards were screened to find those eligible for a randomized study to compare the effect of a nurse-monitored, outpatient-care programme aiming at symptom management, with conventional care. The inclusion criteria were patients classified in New York Heart Association classes III-IV, age 65 years, and eligibility for an outpatient follow-up programme. The total in-hospital population of patients discharged with a heart-failure diagnosis was surveyed. Eighty-nine per cent of all the hospitalized patients (n=1541) were 65 years old. Of these, 69% (n=1058) were treated in the medical wards which were screened. The study criteria were met by 158 patients (15%). No visits to the nurse occurred in 23 cases among the 79 patients randomized to the structured-care group (29%), mainly on account of death or fatigue. The numbers of hospitalizations and hospital days did not differ between the structured-care and the usual-care groups.

Conclusions: Given the selection criteria and the outline of the interventions, the outpatient, nurse-monitored, symptom-management programme was not feasible for the majority of these elderly patients with moderate-to-severe, chronic heart failure, mainly because of the small proportion of eligible patients and the high drop-out rate. Management of these patients would have to be more adjusted to their home situation.

The meaning of elderly patients' experiences of living with chronic heart failure was studied. Narrative interviews were analysed using a phenomenological hermeneutic approach. 'Feeling imprisoned in illness' and 'feeling free despite illness' constituted the themes. These themes were interpreted as describing variations in awareness of the relationship between the self and the body. In theme 'feeling imprisoned in illness' the body's illness and disability hindered the subjects from being themselves. In the theme 'feeling free despite illness' the disabled body was not experienced as limiting, but rather as a part of the self. The patients' understanding of the illness must be interpreted by the caregiver, who also needs to be aware of different modes of communicating feeling about the illness.

BackgroundThe legislation of many Western countries emphasizes active patient participation. Patients with chronic heart failure (CHF), however, have experienced participation differently from the general interpretation of legal definitions. Education improves uptake of self-management strategies yet knowledge is lacking about support of patients' own resources in CHF.

AimTo explore the phenomena of patient participation and non-participation as shown in patient visits to a nurse-led clinic for CHF and as experienced by the patients and nurses.

MethodsData triangulation of field notes from participatory observations and texts from narrative interviews with the patients and assigned nurse specialists. Data were analyzed according to the phenomenological hermeneutic tradition.

FindingsPatients' experience of participation and non-participation was interpreted as “Being responsible and accepting responsibility” and “Lacking an equal relationship while being controlled”, respectively. Nurses experienced patient participation as “Getting information and security to act” and patient non-participation as “Not accepting”.

ConclusionConflicting values of patients and nurses, which were interpreted with respect to participation and non-participation, presumably might influence patient information and education negatively. The issue of participation should be raised as a means of attaining concordance and to facilitate patient participation with education specifically tailored to the individual patient's needs.

Background: Patient participation is stressed in the health care acts of many western countries yet a common definition of the concept is lacking. The understanding of experiences of patients with chronic heart failure (CHF) who attend nurse-led specialist clinics, a form of care suggested as beneficiary to this group, may promote a better understanding of participation. Aim: To investigate the meanings of participation and non-participation as experienced by patients living with CHF. Methods: Narrative interviews analysed in the phenomenological hermeneutic tradition inspired by Ricoeur where the interpretation is made in the hermeneutic circle, explaining and understanding the experienced phenomena. Findings: Participation was experienced as to “be confident”, “comprehend” and “seek and maintain a sense of control”. Non-participation was experienced as to “not understand”, “not be in control”, “lack a relationship” and “not be accountable”. The findings indicate that the experiences of participation and non-participation can change over time and phases of the disease and treatment. Conclusion: The study suggests an extended view on the concept of participation. Patients' experiences of participation in health care can vary and should therefore be an issue for dialogue between nurses and patients with CHF in nurse-led specialist clinics.

The aim was to describe nursing home (NH) caregivers' work experiences while receiving education and clinical supervision for 2 years. Working in elder care seems to be losing its attraction especially with organizational changes, cutbacks and changes in work place conditions. Clinical supervision has been reported to increase job satisfaction and creativity. Semi-structured interviews from caregivers working at an NH in Sweden were conducted, at the start and again at 12 and 24 months. At about 12 months the caregivers were informed of planned cutbacks. Content analysis was the method used to analyse the interviews from seven caregivers who participated throughout the entire period. Findings show that the value of a caring milieu was one category generated by the subcategories: experiences related to work activities and changes, and experiences related to relationships. The value of knowledge was the other category that was influenced by the experiences related to the different backgrounds and the experiences related to increased knowledge gained from the support through education and clinical supervision. The categories contained positive as well as negative influences on care. The initial focus on practical duties associated with the opening of the NH shifted towards caregiver activities with the elders they spoke warmly about. After 2 years the caregivers' willingness to care continued despite their disappointment in the worsened working conditions. The main theme that resulted was: Despite shattered expectations a willingness to care for elders remained. Continued education and clinical supervision seems to be one factor behind the retained willingness. These findings demonstrate that support and caregiver involvement in educational programmes are important during times of change and when disappointments arise in the workplace.

AIM AND OBJECTIVES:

The aim of this study was to compare the degree of concordance between patients and Registered Nurses' perceptions of the patients' preferences for participation in clinical decision-making in nursing care. A further aim was to compare patients' experienced participation with their preferred participatory role.

BACKGROUND:

Patient participation in clinical decision-making is valuable and has an effect on quality of care. However, there is limited knowledge about patient preferences for participation and how nurses perceive their patients' preferences.

METHODS:

A comparative design was adopted with a convenient sample of 80 nurse-patient dyads. A modified version of the Control Preference Scale was used in conjunction with a questionnaire developed to elicit the experienced participation of the patient.

RESULTS:

A majority of the Registered Nurses perceived that their patients preferred a higher degree of participation in decision-making than did the patients. Differences in patient preferences were found in relation to age and social status but not to gender. Patients often experienced having a different role than what was initially preferred, e.g. a more passive role concerning needs related to communication, breathing and pain and a more active role related to activity and emotions/roles.

CONCLUSIONS:

Registered Nurses are not always aware of their patients' perspective and tend to overestimate patients' willingness to assume an active role. Registered Nurses do not successfully involve patients in clinical decision-making in nursing care according to their own perceptions and not even to the patients' more moderate preferences of participation.

RELEVANCE TO CLINICAL PRACTICE:

A thorough assessment of the individual's preferences for participation in decision-making seems to be the most appropriate approach to ascertain patient's involvement to the preferred level of participation. The categorization of patients as preferring a passive role, collaborative role or active role is seen as valuable information for Registered Nurses to tailor nursing care.

AIM:

This paper reports a study to determine the degree of agreement or disagreement between nurses and patients in their perceptions of the presence, severity, and importance of nursing problems.

BACKGROUND:

Patient experiences, values and preferences are increasingly acknowledged as important factors underpinning healthcare decision-making. The ability to identify patient problems accurately is an important prerequisite for planning and implementing individualized high quality care.

METHODS:

A convenience sample of patients (n = 80) and Registered Nurses (n = 30) in an acute care setting responded to a 43-item questionnaire. Findings. Nurses identified patients' problems with a sensitivity of 0.53 and a positive predictive value of 0.50. Patients identified several severe problems that were not identified by nurses, particularly problems with nutrition, sleep, pain, and emotions/spirituality. Nurses underestimated the severity in 47% of mutually-identified problems. An overall level of agreement of 44% was found on the importance of patient problems. Low levels of agreement on severity and importance were related more to individual differences than to systematic differences.

CONCLUSIONS:

Nurses need to be more aware that patients and nurses often hold disparate views of the priorities in nursing care. To plan individualized nursing care effectively, nurses need to elicit and use individual patients' preferences more systematically in care planning.