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Biomedical subjects

Gerd Ahlström

Publications and source records attributed to Gerd Ahlström.

At least 19 recordsLinked to original sources

Fulfilment of patients' goals after thalamic deep brain stimulation: a follow-up study.

Deep brain stimulation (DBS) in the ventrolateral thalamus (VIM) is shown to reduce tremor in essential tremor (ET) and Parkinson's disease (PD). Our aim was to evaluate the results of VIM DBS from the patients' perspective. Sixteen consecutively included patients (8 ET and 8 PD) described their own outcome goals preoperatively and evaluated the fulfillment 1, 6 and 12 months postoperatively. We conclude that the patients could do specific activities that are of importance to them such as eating, drinking and socializing, and perceived either partial or total fulfillment of their goals.

Adult↗

The relationship between function, quality of life and coping in patients with low-grade gliomas.

OBJECTIVES: The principal aim of the study was to describe function, quality of life and coping with illness-related problems in patients with low-grade gliomas (LGG), to evaluate the need of support. A second aim was to investigate how function, quality of life and coping were related. MATERIALS AND METHODS: Thirty-nine patients with a diagnosis of LGG answered the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC-QLQ-C30) and the Ways of Coping Questionnaire (WCQ). The patients' level of function was assessed in accordance with the WHO performance status scale. RESULTS AND DISCUSSION: Nearly all patients were capable of self-care, but less than half were able to carry out normal activities without restriction. Problems with fatigue, sleep disturbances and pain were most frequent. Most difficulties were reported in the domains, Role, Cognitive and Emotional functioning. Seventeen patients (45%) had scores indicating low overall quality of life. Ratings of overall quality of life and fatigue had the strongest relationship. The trend in the results suggested that mental problems have a stronger impact on quality of life than physical ones. Emotion-focused coping dominated. There was a significant relationship between coping by escape-avoidance and lower level of emotional functioning. CONCLUSIONS: The results of this study indicate that a multidisciplinary team is needed for assessment and treatment of the different problems in patients with LGG. Furthermore, special attention should be paid to patients who use coping by escape-avoidance, as this is associated with emotional distress.

Activities of Daily Living↗

Psychometric evaluation of the Ways of Coping Questionnaire as applied to clinical and nonclinical groups.

OBJECTIVE: The purpose of this study is to describe coping and evaluate the psychometric properties and the factor structure of the Ways of Coping Questionnaire (WCQ) applied to clinical and nonclinical groups. METHOD: The responses of 510 subjects (chronically disabled patients, their next of kin, and students) who completed the Swedish version of the WCQ were the basis for confirmatory factor analyses of the original eight-factor model as well as of the model consistency across samples. RESULTS: The coping patterns that emerged in the case of the patients were very similar to those of the next of kin. The exceptions were greater use of Distancing by patients and of Positive Reappraisal by next of kin. The results showed support for the original eight-factor model, but deviation from the equality of factor structures among the subsamples indicated a limited use of the WCQ in between-sample comparisons. CONCLUSION: Modifications to the eight-factor model adequately described the subsamples, supporting the use of the WCQ in within-sample settings. This was particularly evident from the evaluation of alternative factor structures based on previously described models derived from clinical samples.

Adaptation, Psychological↗

Personal assistance for patients living with a severe neurological disorder.

Patients with neurological diseases increasingly are being cared for at home. The purpose of this study was to describe stressful everyday experiences in connection with neurological disorders, to learn how people cope with such experiences, and gain knowledge about coping resources. Twenty-seven persons receiving personal assistance were interviewed twice at home. The 54 interviews were subjected to inductive content analysis. The persons encountered many problems in everyday life and usually handled them by means of acceptance, avoidance, practical problem solving, and reappraisal. Dependence on personal assistance gave rise to a sense of helplessness, but it was also the major coping resource. Nurses can improve home care by giving instruction and guidance to persons working as personal assistants.

Adaptation, Psychological↗

From symptom to diagnosis: illness experiences of multiple sclerosis patients.

This interview study describes 61 multiple sclerosis (MS) patients' conceptions of the disease before they were diagnosed and their experiences of the initial symptoms and the diagnosis. Qualitative content analysis was applied. The patients' perception of MS was in most cases disablement and death, but some narrated a more nuanced image of MS. The experiences of the initial symptoms and the diagnosis were stressful. The patients became and remained vulnerable through diagnosis. They managed the situation in a variety of ways to acquire strength. Nurses who encounter MS patients require specialized knowledge to understand the vulnerability of these patients and to provide support.

Activities of Daily Living↗

Cross-cultural interview studies using interpreters: systematic literature review.

AIM: This paper reviews how the interpreter's role is described in empirically based, qualitative cross-cultural interview studies and how trustworthiness is determined. BACKGROUND: Increased immigration during the past decades has created a multiethnic society in many countries. This development poses a challenge to healthcare staff, in that they need to understand how people from different cultures experience health and illness. One way to assess immigrants' experiences is through cross-cultural interview studies, involving an interpreter. Thorough knowledge of the interpreter's role is needed in order to increase the trustworthiness of this kind of nursing research. METHOD: Literature searches were conducted from October to November 2004 using PubMed, CINAHL, Psycinfo, Sociological abstract, Your Journals@ovid, and Eric databases. Qualitative interview studies written in English and performed with an interpreter were included. The Matrix Method was used to review the literature. FINDINGS: In almost all of the 13 relevant papers found, the role of the interpreter(s) in the research process was only sparsely described. In addition, all studies except one employed different techniques to established trustworthiness. The most common techniques were prolonged engagement, member check or triangulation, the latter performed either on the data, investigators or methods. CONCLUSION: Methodological issues with respect to interpreters have received only limited attention in cross-cultural interview studies. Researchers in the field of nursing need to consider (1) the interpreter's role/involvement in the research process; (2) the interpreter's competence and the style of interpreting; (3) the interpreter's impact on the findings. This information is a prerequisite when trying to determine the trustworthiness of a cross-cultural study.

Communication Barriers↗

Theoretical model of coping among relatives of patients in intensive care units: a simultaneous concept analysis.

UNLABELLED: This paper reports the development of a theoretical model of relatives' coping approaches during the patient's intensive care unit stay and subsequent recovery at home by performing an analysis of concepts generated from two empirically grounded, theoretical studies in this area. BACKGROUND: When supporting relatives of intensive care unit patients, it is important that nurses have access to evidence-based knowledge of relatives' coping approaches during the period of illness and recovery. METHOD: Simultaneous concept analysis was used to refine and combine multiple coping concepts into a theoretical model of coping. The concepts were generated in two previous empirical studies of relatives' coping approaches during mechanically ventilated patients' intensive care unit stays and recovery at home. FINDINGS: The theoretical model was developed in 2004-2005 and illustrates the effectiveness of different coping approaches in relation to each other and to social support. Definitions summarizing each coping approach and containing the knowledge gained through the simultaneous concept analysis method were also formulated. CONCLUSION: This middle-range theory of relatives' coping approaches may make a valuable contribution to international intensive care unit nursing practice, especially as it is based on empirical studies and may therefore serve as a basis for the development of future clinical guidelines. However, the theoretical model needs to be empirically validated before it can be used.

Adaptation, Psychological↗

Patients' perceptions of the concept of the quality of care in the psychiatric setting: a phenomenographic study.

AIM: The aim was to describe how patients perceived the concept of quality of care in psychiatric care. BACKGROUND: It is important to include patients' experiences in defining quality of care and in the development of instruments measuring quality of psychiatric care, as patients have unique information. But only a limited number of studies have directly involved patients. DESIGN: It was a qualitative interview study with 20 adult in and outpatients from psychiatric care. METHOD: A phenomenographic approach was used for the analysis of the interviews. RESULTS: The results showed that quality of care was perceived as a positive concept, namely as 'good' quality of care. The normative component was striking. Five descriptive categories emerged: The patient's dignity is respected; The patient's sense of security with regard to care; The patient's participation in the care; The patient's recovery; and The patient's care environment. Two conceptions emerged that had not emerged explicitly in earlier studies of quality of care: Being helped to reduce the shame and Being looked upon as like anyone else. CONCLUSIONS: The findings emphasize the importance of the interpersonal relationship between patients and staff. There is a need for further exploration of central aspects of quality in psychiatric care. RELEVANCE TO CLINICAL PRACTICE: It is important that the knowledge about how patients perceived the quality of care in psychiatric care is included in the planning and evaluation of care. The guidelines should designate quality of care from the patient perspective as the goal of interventions.

Adult↗

Being the next of kin of an adult person with muscular dystrophy.

A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.

Adaptation, Psychological↗

Nurses' and physicians' opinions on aggressiveness of treatment for general ward patients.

The aim of this study was to evaluate agreement between nurses' and physicians' opinions regarding aggressiveness of treatment and to investigate and compare the rationales on which their opinions were based. Structured interviews regarding 714 patients were performed on seven general wards of a university hospital. The data gathered were then subjected to qualitative and quantitative analyses. There was 86% agreement between nurses' and physicians' opinions regarding full or limited treatment when the answers given as 'uncertain' were excluded. Agreement was less (77%) for patients with a life expectancy of less than one year. Disagreements were not associated with professional status because the physicians considered limiting life-sustaining treatment as often as the nurses. A broad spectrum of rationales was given but the results focus mostly on those for full treatment. The nurses and the physicians had similar bases for their opinions. For the majority of the patients, medical rationales were used, but age and quality of life were also expressed as important determinants. When considering full treatment, nurses used quality-of-life rationales for significantly more patients than the physicians. Respect for patients' wishes had a minor influence.

Age Factors↗

Severely ill ICU patients recall of factual events and unreal experiences of hospital admission and ICU stay--3 and 12 months after discharge.

UNLABELLED: There is a lack of knowledge regarding how critically ill patients recall of the ICU and their life-threatening condition changes over time. The purpose of this study is to describe critically ill and ventilator-treated patients' recollections of both factual events and unreal experiences at 3 and 12 months following discharge from the ICU. The study is qualitative and encompasses nine critically ill ICU patients, ventilator-treated for more than 72 h. The participants were interviewed twice, at 3 and 12 months after their discharge from the ICU. The interviews were analysed using qualitative content analysis. The patients in this study reported unreal experiences, memory confusion and/or disturbances before admittance to the ICU and before their respirator treatment. Their "unreal experiences" were far clearer than their memories of factual occurrences. Patients' fragmentary memories of factual events and their recall of unreal experiences were practically unchanged after 12 month. Their unreal experiences could still be recalled and related after 12 months, but not with the same expression and feeling as earlier (3 months). The unreal experiences were not - after 12 months - their initial recollections, as they had been after 3 months. CONCLUSIONS: Patients' recollections of both factual events and unreal experiences show very little variation between 3 and 12 months. The stability of long-term memory after 12 months shows that the recollection of their experiences had been both traumatic and emotionally charged. This study shows that critically ill patients were affected by cognitive disturbances and/or disturbed memory before their arrival at the ICU. This result indicates the need of ICU follow-up clinics.

Adult↗

Emotional distress and coping in the early stage of recovery following acute traumatic hand injury: a questionnaire survey.

BACKGROUND: Emotional distress is frequent in patients with acute traumatic hand injury during the first weeks after the accident. Knowledge of coping in relation to emotional distress could help to identify those who need support. OBJECTIVES: To describe the different kinds of coping used by patients in the early stage of recovery following an acute traumatic hand injury and to investigate differences in coping patterns in patients with and without symptoms of emotional distress. DESIGN: Questionnaire survey with a descriptive and comparative design. SETTING/PARTICIPANTS: A total of 112 patients with acute traumatic hand injury requiring inpatient treatment at the hand surgical clinic. Those with injuries caused by a suicide attempt or with known drug abuse were excluded. Method/main outcome measures: The patients answered a postal questionnaire at home 1-2 weeks after the accident. Emotional distress was assessed with the Hospital Anxiety and Depression scale. Coping was measured with the Jalowiec Coping Scale-40. RESULTS: Coping by "trying to keep the situation under control" and "trying to look at the problems objectively and see all sides" were most frequent. These strategies are typical for the confrontive coping style, which dominated in the actual illness-situation. Symptoms of emotional distress occurred in 32% of the patients. These patients used significantly more kinds of coping strategies and used confrontive and emotive coping strategies more often than the others. Coping by "hoping for improvement", "working tension off with physical activity", "trying to put the problem out of one's mind", "worrying", "getting nervous or angry" and "taking off by one self" were associated with emotional distress. Coping by "accepting the situation as it is" and "thinking that it is nothing to worry about" were more frequent in patients without emotional distress. CONCLUSIONS: Observations of the coping strategies associated with emotional distress in this study could help to identify patients in clinical practice that need nursing support. Coping associated with less emotional distress should be encouraged.

Activities of Daily Living↗

Living with a hereditary disease: persons with muscular dystrophy and their next of kin.

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.

Adult↗

Illness-related problems and coping among persons with low-grade glioma.

The literature reveals no qualitative study concerning the consequences of low-grade glioma in adults. The aim of the present study was to describe perceived illness-related problems in persons with low-grade glioma and the coping used in everyday living. The study was cross-sectional within a well-defined population. A semi-structured qualitative interview was conducted with each of 39 persons, and the data were subjected to inductive content analysis. There was a wide range of perceived problems, mainly concerning bodily functions, memory, cognition, emotion, communication and perception. Several coping strategies emerged, the most frequent being searching for a solution, which was often related to memory and communication problems. One characteristic of communication was the creation of new words. Other common strategies were refraining from and avoiding and laughing and joking. Caring about self involved prioritizing of personal needs. A striving to feel a sense of solidarity within seeking social affinity was coping with a novel content. The study provides vivid narratives about previously unreported phenomena, conveying a deeper understanding. The variety and endurance of problems revealed verifies the need of support from several professionals, including in the form of out-patient post-medical care.

Adaptation, Psychological↗

Lifeworld perspectives on assistive devices: lived experiences of spouses of persons with stroke.

The purpose of this study was to explore how spouses of persons with a disability following stroke describe their lived experiences regarding assistive devices in everyday life. A phenomenological lifeworld approach was used and conversational interviews were conducted with 12 spouses. Their lived experiences of assistive devices were explored in relation to four lifeworld existentials intertwined in everyday life. The results showed that lived body concerns aspects of feelings, habits, and incorporation of the devices with one's own body. The devices are, from the spouses' perspective, a prerequisite for their partner with stroke living at home. Successively the devices are incorporated into the couples' homes, and they provide a new view of the environment, aspects related to lived space. The devices bring about a changed relation to lived time, related to past, present, and future. Further, lived human relation concerns changed relationships to husbands/wives with stroke, including a great responsibility due to the devices and their usage. The results also included stigmatizing aspects and a twofold relationship to health professionals regarding participation in decisions about prescribing assistive devices. Understanding the unique meaning of assistive devices from the spouses' perspective is vital for occupational therapists prescribing such devices.

Adult↗

Quality of life in patients with muscular dystrophy and their next of kin.

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.

Adult↗

Sickness impact in people with muscular dystrophy: a longitudinal study over 10 years.

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.

Activities of Daily Living↗

Living with a chronic deteriorating disease: the trajectory with muscular dystrophy over ten years.

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.

Accidental Falls↗