Abstract: Objective: To investigate patients' mobility and satisfaction with their lower limb prosthetic or orthotic device and related service delivery in Malawi and to compare groups of patients regarding type and level of device and demographics. Methods: Questionnaires were used to collect self-report data from 83 patients. Results: Ninety percent of prostheses or orthoses were in use by patients, but approximately half of these needed repair. Thirty-nine percent reported pain when using their assistive device. The majority of patients were able to rise from a chair (77%), move around the home (80%), walk on uneven ground (59%) and travel by bus or car (56%). However, patients had difficulties walking up and down hills (78%) and stairs (60%). In general, patients were quite satisfied with their assistive device (mean of 3.9 out of 5) and very satisfied with the service provided (mean of 4.4 out of 5). Access to repairs and servicing were rated as most important, followed by durability and follow-up services. Lack of finances to pay for transport was a barrier to accessing the prosthetic and orthotic centre. Conclusion: Patients were satisfied with the assistive device and service received, despite reporting pain associated with use of the device and difficulties ambulating on challenging surfaces.
Abstract: The influence of demographic characteristics on patients' ratings of the quality of psychiatric outpatient care has been given little attention in research. The aim of the present study is to elucidate the quality of psychiatric care among outpatients and investigate demographic and clinical factors associated with the way in which this quality is perceived. A sample of 1340 outpatients from 15 general adult psychiatric clinics in Sweden completed the quality in psychiatric care-out-patient (QPC-OP), with a response rate of 71%. The patients' highest ratings were for Encounter; the lowest were for discharge. Most notably, quality of care was rated higher by women, older people, those with a partner, those with a lower educational level and those who were gainfully employed. In regard to visits to the clinic, higher quality of care was associated with shorter waiting time, better information and fewer professions encounters. Older people and those gainfully employed reported better mental health. Thus the QPC-OP was associated with both demographic and clinical factors. In particular, 'wanting to come back to the clinic' was the single strongest predictor of quality.
Abstract: Receiving a cancer diagnosis affects family members as well as the person diagnosed. Family members often provide support for the sick person in daily life out of duty and love, and may not always think of their own vulnerability to illness. To individualise support for them, family members who are most at risk for becoming ill must be identified.The aim of this study was to investigate health-related quality of life (HRQOL) in family members of patients with advanced lung or gastrointestinal cancer 3 to 15 months after diagnosis.
Abstract: Registered Sick Children's Nurses and District Nurses employed at Child Health Care centres are in a position to help prevent childhood overweight and obesity. Prevention of this challenging public health threat could be improved through having a better understanding of how this group of nurses perceives childhood obesity. The aim of this study was to elucidate the conceptions of childhood overweight, including obesity, among nurses working in Child Health Care.
Abstract: A personal assistant has to promote equality in living conditions for persons with severe disabilities. The aim of this study was to explore how personal assistants experience their work and what strategies they employ to alleviate work-related stress. Thirty personal assistants were interviewed and latent content analysis was performed. The findings regarding the experiences of work-related stress could be brought together under the theme of "difficulties of being in a subordinate position," and those regarding management strategies could be brought together under the theme of "coming to terms with the work situation." There is a need to empower personal assistants through training programs including tailored education, working communities, and coaching.
Abstract: To strengthen the mental well-being of close family of persons newly diagnosed as having cancer, it is necessary to acquire a greater understanding of their experiences of social support networks, so as to better assess what resources are available to them from such networks and what professional measures are required. The main aim of the present study was to explore the meaning of these networks for close family of adult persons in the early stage of treatment for advanced lung or gastrointestinal cancer. An additional aim was to validate the study's empirical findings by means of the Finfgeld-Connett conceptual model for social support. The intention was to investigate whether these findings were in accordance with previous research in nursing.
Abstract: Empowering interventions can improve person-centered care. A pre- and post-evaluation using interactive research involving two years of empowering interventions was designed to improve quality of care in outpatients with chronic kidney disease who were pre-dialysis. The results showed significantly increased empowerment in the intervention group. Interactive research facilitated the implementation of the empowerment intervention, which may increase sustainability over time.
Abstract: Family members of persons with pre-dialysis chronic kidney disease may experience feelings of vulnerability and insecurity as the disease follows its course. Against this background, the aim of the present study was to explore empowerment in outpatient care as experienced by these family members.
Abstract: The purpose of the present study was to test the psychometric properties and dimensionality of the Quality in Psychiatric Care - Outpatient (QPC-OP) instrument, in order to determine whether the model of QPC that is applicable to the inpatient clinic is also applicable to the outpatient clinic, and to briefly describe the patients' perceptions of quality of psychiatric outpatient care. A sample of 1340 outpatients from 15 general adult psychiatric clinics in Sweden participated in the study. A confirmatory factor analysis revealed that the QPC-OP consists of eight dimensions, and has a factor structure largely corresponding to that of the QCP - Inpatient instrument. The internal consistency of the factors was generally acceptable, except in the case of two, where there were not enough items. Thus, the QPC-OP shows adequate psychometric properties. The patients' ratings of quality of care were generally high; the highest rating was for 'encounter' and the lowest for 'discharge'. The quality of discharge was rated as the lowest among the eight dimensions in 14 of the participating outpatient clinics. Thus, this dimension would seem to indicate an important area for improvement. The QPC-OP includes important aspects of patients' assessments of quality of care, and offers a simple and inexpensive way to evaluate psychiatric outpatient care.
Abstract: Relocation of persons with dementia might be considered when quality of care cannot be sustained due to increasing needs. Relocation has been studied from the aspects of mortality and morbidity. AIM. To explore the thoughts and experiences of care workers when relocating a person with dementia within municipal sheltered housing.
Abstract: Primary health care specialists have a key role in the management of obesity. Through understanding how they conceive the encounter with patients with obesity, treatment may be improved. The aim of this study was thus to explore general practitioners' and district nurses' conceptions of encountering patients with obesity in primary health care.
Abstract: Personal assistance is a type of home care common to many countries even though entitlement and legislative framework may vary from country to country. At present, there exists no knowledge about the family members' experiences of such assistance; therefore, the aim of this study was to investigate family members' experiences of personal assistance given to a relative of working age with a functional disability. Twenty-five family members who had a relative with a severe neurological disease in Sweden were interviewed about the significance of personal assistance, and the qualitative interviews were subjected to qualitative latent content analysis. The overall findings verify the close connection between the family members' experiences and their perception of the quality of the caring relationship between the personal assistant and the person with disability. The main finding was an appreciation of the personal assistance on the part of the family members. However, in situations where the encounter between the assistant and the relative with disability was perceived negatively, the family members experienced great anxiety. The shortcomings were the inability to maintain a private life with assistance and the limitation of choice because of the shortage of personal assistants. Beyond these general findings, this study found that personal assistance was experienced by the family members in terms of dignity and empowering care. This theme was generated from seven subthemes: Insight into private life, Security through the close relation, Social life through freedom of movement, Influence over the organisation of assistance, Self-determination and understanding, Friendship and mutual respect and Adaption to the dependency on assistance. The findings indicate that responsible officials, work leaders and assistants need constantly to improve the implementation of the law. In such efforts, the experiences of family members described in this study are a source of knowledge.
Abstract: The aim of the study was to describe the quality of life of the next of kin of patients diagnosed as having multiple sclerosis (MS). Forty-four next of kin were interviewed and thereafter answered the Subjective Quality of Life questionnaire. The next of kin's quality of life emerged as good in terms of both external conditions and interpersonal relationships in both the interviews and the Subjective Quality of Life. In the interviews, most of the next of kin indicated a trusting and secure relationship with the cohabiting partner, but others described a strained situation with an unsatisfactory married/cohabiting life. There was worry about a worsening of the relationship in the future. In addition, the next of kin spoke of a decrease in freedom, self-actualization, and security, also of a more negative general mood and negative emotional experiences. The results of the questionnaire showed that a sense of engagement in life, having energy, self-actualization, self-assuredness, self-acceptance, security, and general mood were significantly correlated with quality of life as a whole. The study confirms that MS is a disease affecting the whole family, and the next of kin were living in uncertainty, facing an unpredictable future. The nurses could start family support groups and help the next of kin to look after their own health, giving advice on health-promoting behavior to make it possible for the person with MS to live at home even if the illness becomes worse.
Abstract: The purpose of this paper is to test the psychometric properties and dimensionality of a new instrument, quality in psychiatric care (QPC), and to describe and compare quality of care among in-patients as measured by this instrument.
Abstract: In Sweden adults with major and sustainable disabilities can be granted publicly financed support in the form of personal assistance after assessment and decision-making in accordance with government rules. The purpose of the present study was to explore more deeply the encounters in close care relations between personal assistants and disabled persons of working age, as well as the prerequisites for and obstacles to the success of such encounters, this from the perspective of the personal assistants. Thirty-two personal assistants (22- to 55-year old) who worked for 32 persons with serious neurological diseases living at home were interviewed. The transcribed unstructured interviews were qualitatively analysed using latent content analysis. The analyses resulted in five main themes: Perceptive awareness, Entering into the other's role, Mutuality, Handling the relationship and Personal difficulties facing the assistant. These themes illustrated that a prerequisite for the encounter's being meaningful is that the assistant should be able to observe and understand the unique needs of the disabled person. The assistant must furthermore be able to put herself/himself into the other person's position. It is also important that the personal chemistry between the assistant and the disabled person should be good. Being able to share feelings and interests with the functionally impaired person provides the assistant with positive emotional confirmation of a good relationship. A distressing dilemma the assistant faces is that of distinguishing between the working relationship and the personal friendship. In this borderline area are found experiences, feelings and events that the assistant may view as negative or even unacceptable. This study contributes to the understanding of the complexity underlying the daily community care of disabled persons with an extensive need for care and assistance.
Abstract: Being diagnosed as having a chronic disease gives rise to emotions. Beliefs about health are culturally constructed and affect people's decisions regarding treatment. No studies have been reported that focus on the health beliefs of immigrants of Somalian origin with diabetes and how these people experiences the diagnosis. Therefore the aim of the present study was to investigate how immigrants from Somalia living in Sweden experienced receiving the diagnosis and describe their beliefs about health.
Abstract: To investigate Swedish and Chinese nurses' conceptions of ethical problems and workplace stress and ascertain whether there are differences between the nurses in the two countries and between types of clinics.
Abstract: The purpose of this study was to investigate what strategies people with severe functional disabilities who receive personal assistance in their homes use in their daily life to achieve autonomy, integrity, influence and participation. Qualitative interviews were carried out and subjected to qualitative latent content analysis. The main finding was expressed in terms of six subthemes: trying to keep a private sphere; striving to communicate; searching for possibilities; taking the initiative; striving to gain insight; and using one's temperament. These generated the overall theme: maintaining dignity in close relationships. This study contributes an understanding of the strategies used by people who are dependent on personal assistance. Future efforts in nursing must focus on supporting personal assistants with ethical knowledge and guidance in order that people with severe functional disabilities are empowered to achieve autonomy, integrity, influence and participation in their daily lives.
Abstract: The aim of this study was to investigate the experiences of persons with severe functional disabilities who receive personal assistance in their homes, the focus being on their daily life in relation to the ethical principles represented in the Swedish Disability Act: autonomy, integrity, influence and participation. Qualitative interviews were performed with 26 persons and thereafter subjected to qualitative latent content analysis. The experiences of personal assistance were very much in accordance with the said principles, the most important factor being that one is met with understanding. The participants described situations in which their integrity was violated in that they were not treated as competent adults. This indicates the importance of future efforts in nursing to support personal assistants with ethical knowledge and supervision so that they can empower people with disabilities and thereby enable them to maintain their self-esteem and dignity.
Abstract: Patients with low-grade glioma have a longer survival than patients with highly malignant glioma, and for this reason questions of quality of life (QoL) are of particular importance to such patients as well as to their next of kin. No studies have been found in which both adult patients with low-grade glioma and their next of kin have estimated their own QoL. This study was therefore designed to investigate the subjective QoL of these two groups. Thirty-nine patients with low-grade glioma selected from a well-defined county population and 27 next of kin participated in the study. The questionnaire used in the study was the subjective estimation of QoL. The main results and conclusions are as follows: the variable absence of work/meaningful occupation showed statistically significant lower ratings among patients than among next of kin. The results show significant influence mainly on the patients' and their next of kin's internal psychological condition; related to background variables but the pattern in the results was inconsistent. There is a need for recurrent rehabilitation during this long-term disease, and a need to give vocational rehabilitation to support the patient's desire to have a meaningful occupation. It is also of importance to include the patient's next of kin when offering rehabilitation.
Abstract: Learning in clinical education can be understood as a process of becoming a legitimate participant in the relevant context. Interprofessional training wards (IPTWs) are designed to give students from educational programmes in health and social care a realistic experience of collaboration for the purpose of developing teamwork skills. IPTWs have been found to be appreciated by the students and to influence students' understanding of each other's professions. The aim of this study was to describe and analyse the students' learning on an interprofessional training ward in care for older persons through focusing on the students' ways of participating in the communities of practice on the ward. A case study design was chosen. Multiple data sources were used. The findings show that the students engaged as active participants in the care. At the same time there was sometimes a discrepancy between on the one hand expectations and goals, on the other hand actual participation. There were difficulties in making the training relevant for all the student groups involved. The findings indicate that in the planning of interprofessional education the choice of setting and learning situations is crucial with regard to the learning that will occur.
Abstract: Patients' memories of frightening ICU experiences may be a threat to later psychological recovery. The purpose of the study is to describe ICU patients' recall of their emotional reactions, from falling critically ill to hospital discharge; this at 3 and 12 months following discharge from the ICU. The study is qualitative and concerns eight ICU patients ventilated for more than 72h. The participants were interviewed twice and the data were subjected to qualitative content analysis. It emerged that the memories of emotions during the trajectory of critical illness were extensive, detailed and strong, and that unpleasant emotions were clearly stable over time. At 12 months as compared with 3 months, the unpleasant emotions were less intense and had less prominent; furthermore the ICU care was more greatly associated with a sense of security, and there was greater recall of caring doctors and nurses (though not of their names) as well as next of kin. CONCLUSIONS: The study generated knowledge not previously described about how ICU patients' recollection of their emotions during the trajectory of critical illness changes over time. This has implications regarding future study of patients' ICU memories and regarding patients' need for support in coping with such memories.
Abstract: This study concerns Swedish nurses' experiences of workplace stress and the occurrence of ethical dilemmas in a neurological setting. Qualitative interviews were conducted with 21 nurses. The interview results were subjected to qualitative latent content analysis and sorted into 4 content areas: workplace distress, ethical dilemmas, managing distress and ethical dilemmas, and quality of nursing. Common workplace stressors were high workload and lack of influence. These were perceived to have negative consequences for the quality of nursing. Ethical dilemmas mainly concerned decision making on initiation or withdrawal of treatment, which was experienced as a troublesome situation where conflicts could arise. The nurses managed the distress and ethical dilemmas by accepting and adjusting to the situation and seeking support from colleagues. They also endeavored to gain new strength in their private lives.
Abstract: The aim of this study was to compare Swedish and Chinese nurses' experiences of ethical dilemmas and workplace distress in order to deepen understanding of the challenges neuroscience nurses encounter in different cultures. Qualitative interviews from two previously performed empirical studies in Sweden and China were the basis of this comparative study. Four common content areas were identified in both studies: ethical dilemmas, workplace distress, quality of nursing and managing distress. The themes formulated within each content area were compared and synthesized into novel constellations by means of aggregated concept analysis. Despite wide differences in the two health care systems, the nurse participants had similar experiences with regard to work stress and a demanding work situation. They were struggling with similar ethical dilemmas, which concerned seriously ill patients and the possibilities of providing good care. This indicates the importance of providing nurses with the tools to influence their own work situation and thereby reducing their work-related stress.
Abstract: The well-being of patients' next of kin can be an important factor with regard to the care and rehabilitation of patients with multiple sclerosis (MS). The aim of this qualitative study was to explore the presence and meaning of chronic sorrow in a group of next of kin of patients with MS. Using a semistructured interview guide as a basis, 44 next of kin were interviewed. The results showed that 35 (80%) of the participants were considered to have chronic sorrow based on predetermined criteria. Three main themes characterized the meaning of chronic sorrow: loss of security, loss of sense of community in family life, and loss of joy and recreation. This study indicates that nurses need to devote greater attention to the well-being of next of kin, offering support programs to help them cope with chronic sorrow.
Abstract: Our aim in this study was to describe how patients perceive having recovered from eating disorders. A qualitative method with a phenomenographic approach was used to identify various ways of experiencing recovery. Four categories emerged, describing how the subjects now relate in a relaxed and accepting manner to food, the body, themselves as individuals, and their social environment. Some perceived recovery as coping with emotions, while others experienced themselves as healthier than people in general regarding food and weight. Different aspects were emphasized as important for recovery. As long as patients perceive themselves as recovered, it is not necessary that they fulfill all conceivable criteria for recovery.
Abstract: The goals of this study were to describe the ways in which patients with multiple sclerosis (MS) manage chronic sorrow and to apply this information to the theoretical model of chronic sorrow. This descriptive study involved 38 participants with MS who were experiencing chronic sorrow. Using the theoretical model of chronic sorrow, we applied content analysis to participants' accounts of how they attempted to manage this sorrow. The findings showed that discomfort resulted from ineffective management of chronic sorrow, reflecting the vulnerability these patients experience and the lack of understanding of their needs and appropriate support from family, friends, and healthcare personnel. In some cases, however, the losses and emotional distress caused by MS were managed effectively, which led to increased comfort through personal growth and a greater appreciation of life, greater confidence, and hope for the future. The theoretical model was valuable in helping to describe participants' patterns of managing chronic sorrow. Healthcare personnel should acknowledge chronic sorrow as one aspect of psychological distress in MS. Knowledge of patients' experiences of chronic sorrow should be included in the education for neuroscience nurses. Furthermore, it is necessary to develop support interventions for patients with chronic sorrow and their families.
Abstract: There is a paucity of knowledge for health-care professionals who come into contact with next of kin of persons diagnosed with low-grade gliomas. Therefore, the aim of this study was to explore the experience of being the next of kin of an adult person diagnosed with a low-grade glioma. Twenty-eight next of kin of persons with a low-grade glioma were interviewed. The data were subjected to qualitative content analysis. A quantitative data analysis was added to explore how the themes from the qualitative analysis occurred among different next of kin. Four main themes emerged: Extremely stressful emotions, Being invisible and neglected, Changed relations and roles, and Enabling strength in everyday life. The first of these occurred mainly in the early period of illness. This theme was especially predominant in the case of the patient's parents. The theme of Changed relations and roles occurred more often among next of kin some years after the person's diagnosis. The most statements occurred in all four themes were by female next of kin. Many next of kin requested emotional support for themselves and indicated that it is important that health-care staff should not forget them.
Abstract: The aim of this study was to describe nurses' conceptions of decision making with regard to life-sustaining treatment for dialysis patients. Semistructured interviews were conducted with 13 nurses caring for such patients at three hospitals. The interview material was subjected to qualitative content analysis. The nurses saw decision making as being characterized by uncertainty and by lack of communication and collaboration among all concerned. They described different ways of handling decision making, as well as insufficiency of physician-nurse collaboration, lack of confidence in physicians, hindrances to patient participation, and ambivalence about the role of patients' next of kin. Future research should test models for facilitating communication and decision making so that decisions will emerge from collaboration of all concerned. Nurses' role in decision making also needs to be discussed.
Abstract: 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.
Abstract: Our aim was to describe Chinese nurses' experiences of workplace distress and ethical dilemmas on a neurological ward. Qualitative interviews were performed with 20 nurses. On using latent content analysis, themes emerged in four content areas: ethical dilemmas, workplace distress, quality of nursing and managing distress. The ethical dilemmas were: (1) conflicting views on optimal treatment and nursing; (2) treatment choice meeting with financial constraints; and (3) misalignment of nursing responsibilities, competence and available resources. The patients' relatives lacked respect for the nurses' skills. Other dilemmas could be traced to the transition from a planned to a market economy, resulting in an excessive workload and treatment withdrawal for financial reasons. Lack of resources was perceived as an obstacle to proper patient care in addition to hospital organization, decreasing the quality of nursing, and increasing moral and workplace distress. The nurses managed mainly by striving for competence, which gave them hope for the future.
Abstract: The next of kin play a decisive role in the care provided for patients. This and their unique experience of psychiatric care make it important to include them when defining quality of care. The aim of the present study was to describe how next of kin perceive the concept of quality of care in the case of psychiatric care. Twelve next of kin were included in a qualitative interview study and a phenomenographic approach was used for the analysis of the interviews. The next of kin described quality of care mainly from their own perspective but also to a large extent from the patient's perspective as well. Five descriptive categories resulted: dignity, security, participation, recovery, and health-promoting surroundings. Good relations and communication between staff, patients, and next of kin emerged as the central factors regarding the quality of psychiatric care. The next of kin asked for information about psychiatric illnesses and wanted to cooperate in the care. They avoid telling others about their family member's psychiatric illness because of a feeling of shame and guilt. Staff education regarding such feelings and stigmatization could be useful in furthering the understanding of the next of kin's distress and developing interventions to alleviate it. Clinical practice can be improved by guidelines and instruments developed on the basis of this study.
Abstract: Collaboration between professionals in health and social care is essential to meet the needs of the patient. The collaboration is dependent on knowledge and understanding of each other's roles. One means of improving communication and collaboration among professionals is interprofessional education. The aim of this study was to describe the variation in how students in nursing, occupational therapy and social work perceived their own and the other professions. Over a three-week period two interviews were conducted with each of 16 students who were on an interprofessional training ward for older people in a municipal setting in Sweden. A phenomenographical approach was used in the analysis of the interviews. The findings showed great variation in how the students perceived the professions, from simplistic in terms of tasks to a more complex conception in terms of knowledge, responsibility and values. Differences in the ways professions were described concerning their professional stance towards the patients were especially accentuated. The findings indicate that the students need opportunities for reflection on and scrutiny of each other's beliefs and knowledge. The influence of interprofessional education involving reflection on the different health-care professions needs to be explored in future research.
Abstract: Evaluating the use of a powered wheelchair is of importance because of the increasing number of people with disabilities who are provided with one. The aim of this study is to describe characteristics of persons with stroke using an outdoor powered wheelchair and to evaluate the impact of the wheelchair on quality of life. A further aim is to compare the impact on quality of life in respect to age, gender, different disability characteristics, and living conditions. The 32 participants with stroke were recruited consecutively from three county council areas in Sweden. A follow-up design was applied including the EuroQol-5D questionnaires at baseline before the persons were prescribed an outdoor powered wheelchair, and after the participants had used the wheelchair for 3 to 5 months, data were collected by means of the EuroQol-5D and the Psychosocial Impact of Assistive Devices Scale (PIADS). The results indicated an improved quality of life with respect to the items competence, independence, capability, quality of life, well-being, happiness, and self-esteem on the PIADS. The usual activity dimension on the EuroQol-5D showed a significant improvement after wheelchair use. The group who drove the powered wheelchair at least once a day in the summer showed a more positive score on the total PIADS and its Competence subscale than persons who drove less. Furthermore, the group with higher rankings of the importance of the powered wheelchair scored higher on psychosocial impact than did the group with lower rankings. The conclusion is that the powered wheelchair mostly has a positive impact on the quality of life of users with stroke. Service providers should be alert, however, to the possible negative impact of a powered wheelchair on quality of life and support the user.
Abstract: To describe how diabetic immigrants from Somalia experience everyday life in Sweden and how they manage diabetes-related problems, with inclusion of a gender perspective.
Abstract: The aim of this study was to explore the presence and meaning of chronic sorrow and the presence of depression in a fairly large group of persons with multiple sclerosis (MS).
Abstract: The aim of this study was to describe how persons with long-term pain after a stroke experience their care. The study is part of a larger research project concerning a group persons suffering from long-term pain after a stroke. Qualitative interviews were performed with 43 persons suffering from central poststroke pain, nociceptive pain or tension-type headache after their stroke incident. Content congruence emerged among the narratives (n = 43), and therefore the most information-rich ones (n = 23) were selected for deeper investigation by means of qualitative content analysis. The results reveal the patients' need for being respected, understood and supported, also for being given adequate time and information. Accessibility and continuity in the professional contacts and with regard to medical and physical treatment was emphasized. The participants' narratives highlight the importance of the professionals having knowledge of pain and pain management.
Abstract: The aims of the present study were to describe losses narrated by persons afflicted with severe chronic physical illness and to identify the concomitant occurrence of chronic sorrow.
Abstract: Because dementia is a progressive disease, the need for care in municipal shelter accommodations might change over time, raising the crucial question whether to relocate an individual. The aim of the study was to investigate the number of relocations between municipal dementia housing units and to examine the patterns and reasons for relocation, together with the various municipal prerequisites for carrying out relocation. Thirty-three managers of 101 dementia care units in 12 municipalities in Sweden were interviewed, and records of persons who had moved into or out of the dementia care units during the year 2002 were reviewed retrospectively. The results showed that turnover occurred in 35% of the 865 rooms during the year. Of those relocations, 78 (9%) were persons who moved to another accommodation-either into (59), between (13), or out of (6) a dementia care unit. This finding indicates that there are situations in which remaining in place was considered less appropriate than relocating a single individual with dementia to other accommodations with or without dementia specialization. The most common reason for relocation within the municipal shelters was an increased need for care.
Abstract: The principal aim of this paper is to develop an instrument to measure quality of care in the psychiatric setting from an in-patient perspective and to describe quality of care by means of this instrument. A further aim is to investigate the influence of background variables and expectations on the experience of care.
Abstract: 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.
Abstract: 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.
Abstract: 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.
Abstract: 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.
Abstract: 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.
Abstract: Persons with disabilities after stroke are often restricted in activity and participation in society because of mobility limitations. An outdoor powered wheelchair may be one among other interventions in a rehabilitation programme. The aim of this study was to describe and compare activity limitations and participation restrictions in persons with stroke from their own perspective, before and after using an outdoor powered wheelchair.
Abstract: The aim of this study was to describe adult patients' experiences of falling ill and being diagnosed with low-grade glioma. Information concerning such experiences is lacking in the literature. The study population were adults identified within a well-defined population. Interviews were conducted with 27 patients. The interview texts were analyzed using inductive content analysis. Illness onset was described as a sequence of events. Nineteen patients narrated rapid onset and 8 patients prolonged onset. The most commonly described symptoms in both types of onset were headache, epileptic seizures, vomiting, and vision changes. Racing thoughts, depression, and tinnitus were 3 of the more uncommon symptoms. The most prominent negative experiences regarding healthcare included disrespectful encounters and a lack of opportunity for participation. The salient negative life-situation consequences included a lack of social support and attitudes expressing a lack of understanding. However, to some extent, positive experiences also emerged in the interviews concerning healthcare and life situation despite the onset of the illness. In conclusion, most of the patients in the study experienced the illness onset as stressful. Healthcare staff need particular knowledge to understand the vulnerability of the patient in the onset of low-grade glioma.
Abstract: 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.
Abstract: 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.
Abstract: 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.
Abstract: 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.
Abstract: 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.
Abstract: This paper reviews how the interpreter's role is described in empirically based, qualitative cross-cultural interview studies and how trustworthiness is determined.
Abstract: 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.
Abstract: 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.
Abstract: 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.
Abstract: In the late 1980s unaccompanied children began arriving in Sweden. Many of them were teenage boys who had been called up or were at risk of being called up for military service in a war in their home country. Others had fled their homeland for political reasons. The purpose of the study was to describe how unaccompanied young adult refugees experienced their own life situation and well-being seven years after they had gained permanent residency.
Abstract: The aims of this study were to describe the quality of life in patients with multiple sclerosis (MS) given immunological treatment and in those not given immunological treatment and to investigate the relationship between impairment and quality of life.
Abstract: 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.
Abstract: The aim of this qualitative study was to describe pain, coping strategies, and experienced outcome of coping with long-term pain conditions after a stroke. Forty-three participants were interviewed: 15 with central post-stroke pain (CPSP), 18 with nociceptive pain, and 10 with tension-type headache. Analysis of the data was by content analysis. Pain-related problems described were incomprehensibility regarding the pain, disturbed sleep, fatigue, diminished capacity, mood changes, and stress in relationships. Different coping strategies were used; the most common were making the pain comprehensible, planning of activities, taking medications, communicating, and distractions. Changing body position, making comparison, and enduring the pain were common in central or nociceptive pain, rest and relaxation in tension-type headache. Communicating their pain gave a feeling of perplexity and resignation. Satisfaction was reported in the cases of consideration shown by others. Pain after a stroke requires specialized knowledge in order to understand the patient's experiences and to enhance coping.
Abstract: Evidence-based nursing of patients with acute traumatic hand injuries treated at the hand-surgical clinic calls for knowledge about long-term implications.
Abstract: Muscular dystrophy patients have often experimented with different alternative or complementary methods since there is at present no curative medical treatment.
Abstract: Quality of care is a multidimensional concept and has been given different meanings in the literature. The aim in the present study was to describe how the psychiatric care staff and care associates perceived the concept of quality of care in the case of psychiatric care. Ten staff and 10 associates were interviewed. Qualitative method with a phenomenographic approach was used for the analysis. Four descriptive categories emerged: The patient's dignity is respected, The patient's participation in the care, The patient's recovery, and The patient's care environment plays an important role. Quality of care was perceived as a positive concept and as being of great importance for the patient's health and conditions of living. The results were of importance with regard to the forthcoming development of an instrument to measure the quality of psychiatric care.
Abstract: No study has, to our knowledge, previously been published on health-related quality of life (HRQoL) in a group suffering from long-term pain after a stroke.
Abstract: In this study, the presence of motor and cognitive disability is described in a cohort of patients with low-grade glioma recruited from a geographical area with a well-defined population located in the middle of Sweden. The study group consisted of 35 patients, of which 24 were evaluated by both a neurologist and a neuropsychologist, and 11 only by a neurologist. The test battery according to EFIT (Edinburgh Functional Impairment Test) was used by the neurologist to measure impairments of limb function, memory and speech. Patients were asked to self-evaluate their deficits in motor function and cognition by responding to a specific questionnaire. In addition, a neuropsychological test battery was used by an experienced neuropsychologist who had no previous contact with the patients. In general, motor impairment was mild and predominantly found in the upper limb. Neuropsychological assessment revealed moderate or severe cognitive impairment in more than half of the patients. This impairment was not detected by neurological examination, and only to some extent reported by the patients them selves. The results show statistical differences in cognitive function, memory and language as recorded by the three assessors. In conclusion, this study demonstrates the usefulness of neuropsychological assessment as a complement to neurological examination to detect cognitive dysfunction in patients with low-grade gliomas.
Abstract: The aim of the study was to estimate the incidence of trauma-related distress and mood disorders in the early stages after acute traumatic hand injuries and identify characteristics associated with these reactions. Data were obtained from 112 patients by means of mailed questionnaires and medical records. Nearly half of the patients had increased levels of intrusive and avoidance symptoms, indicating trauma-related distress. One-third showed signs of a mood disorder. Mood disorders were associated with the need for help with activities of daily living, pain and avoidance symptoms. The study showed that emotional problems in the early stages after injury are related to the consequences of both the injury and the traumatic experience. Negative reactions to the sight of the hand were associated with both trauma-related distress and mood disorders, suggesting that observation of the reactions to the sight of the hand could help to identify patients in need of psychological support.
Abstract: The purpose of the study is to describe what it like to live with a highly malignant brain tumor from a family perspective. It is a qualitative study in which 3 families, 3 patients, and 5 next of kin have described their experiences in 15 interviews. The study is prospective, with interviews occurring 2-3 weeks after surgery and 3 and 6 months after the onset of the illness. Inductive content analysis has been employed. The results indicate that when a highly malignant brain tumor is diagnosed, the effect on the family is devastating and there is a state of crisis. Characteristically, there is distancing and a sense of helplessness. The members of the family live from day to day in a state of constant anxiety and fear of losing the patient. The affliction limits the patient's capacity regarding activities of daily life, which increases the burden of the next of kin. The next of kin attempt to cope with their grief by occupying themselves with practical tasks and activities that they believe are meaningful. The family members have only good words to say about their encounter with healthcare staff and about the information given. Negative information that the family have not asked for can cause a long period of frustration and anxiety, and they believe that their hope has been taken away from them.
Abstract: Pain after a stroke is a symptom often forgotten, unnoticed although it is reported to be a great problem in care. The aim of this study was to describe disability after a stroke and how long-term pain influences everyday life according to the Multidimensional Pain Inventory - Swedish language version (MPI-S) and to test the reliability of this instrument. Forty-three persons were investigated 2 years after the stroke incident: 15 with central post-stroke pain (CPSP), 18 with nociceptive pain mainly in the shoulder and 10 with tension-type headache. Data collection was performed through the MPI-S and a questionnaire regarding assistive devices, also structured interviews based on the Activities of Daily Living (ADL) staircase and the Self-report impairment questionnaire. The results show that the persons suffered moderate to severe pain. Almost half were dependent in ADL. The most often reported impairments and use of assistive devices concerned mobility and/or motion. This was most frequent in persons with nociceptive pain. There were significant differences in persons with central pain and nociceptive pain compared with tension-type headache with regard to mobility- and/or motion-related activities. No statistical differences emerged between age, gender, different types of pain and the MPI-S scales, nor any significant differences in degree of pain as between different types of pain according to the Self-report impairment questionnaire. The reliability analysis of the MPI-S shows good homogeneity in all scales except Interference, Life Control and Affective Distress. This is the first study with MPI-S on mainly older persons and on stroke patients, thus further research is needed on this instrument as well as on which specific activities evoke the pain. This is in order to offer adequate treatment, care and support to persons with pain after a stroke.
Abstract: The aim of this study was to classify and describe the characteristics of different long-term pain conditions after a stroke by clinical examination and pain assessment using the Pain-O-Meter and a Pain questionnaire. Pain was classified as central post-stroke pain (n = 15), nociceptive pain (n = 18), and tension-type headache (n = 10). In 65%, pain onset was within 1-6 months and the pain intensity revealed individual differences. Many pain descriptors was common, some were discriminating as burning in central and cramping in nociceptive pain, and pressing and worrying in headache. More than half with central or nociceptive pain had continuous or almost continuous pain. Cold was the factor mostly increasing the pain in central, physical movements in nociceptive pain, and stress and anxiety in headache. More than one-third had no pain treatment and two-thirds of those with central pain had no or inadequate prescribed pain treatment. The clinical findings support the classification of pain and describe discriminating and common pain characteristics in pain conditions after a stroke.
Abstract: One of the most widely used self-assessment inventories of coping is the Ways of Coping Questionnaire. The aims of the study were to describe coping with illness-related problems in persons with muscular diseases and to investigate the influence of demographic variables. Also, the reliability of the Swedish version of the Ways of Coping Questionnaire was to be evaluated. Forty-four persons with muscular dystrophy and 32 persons with postpolio syndrome, along with a comparison group of 214 students, completed the questionnaire. The findings of this study show that there are some different coping patterns in students as compared with persons with chronic disease. The coping strategy Distancing was used more and the strategy Accepting Responsibility used less frequently in the chronic disease groups and may be an expression of the inevitable physical limitations caused by the progressiveness of muscular dystrophy and postpolio syndrome. Furthermore, persons with muscular dystrophy also used less problem-focused coping in the form of Confrontive Coping and Planful Problem Solving when compared with the postpolio and student groups. In addition, women in the three groups employed the strategy of Seeking Social Support more often than did men. Regarding the psychometric properties of the Swedish version of the Ways of Coping Questionnaire, internal consistency was acceptable for the total score, but lower and not acceptable for several of the subscales. In the student group, but not in the chronic disease groups, there were low correlations between subscales, which indicate discriminative ability. More research is necessary to further investigate the reliability and validity of the Swedish version of the Ways of Coping Questionnaire before this instrument can be used routinely to assess coping patterns in patients with chronic disease.
Abstract: The purpose of the present study is to describe the illness experience of persons with muscular dystrophy, their experience of activities of daily living, and whether there are any differences in how different types of muscular dystrophy affect people's lives.
Abstract: The study concerns 77 adults with muscular dystrophy (mean age 49 years) in two counties in Sweden. The purpose was to investigate activities of daily living, quality of life and the relationship between these. Data collection was performed with "the Activity of Daily Living Staircase", "the Self-report Activity of Daily Living" and the Quality of Life Profile. The results indicated that over half of the subjects were dependent on others, chiefly in activities requiring mobility. Muscular dystrophy had mostly negative consequences, and nearly half stated that life would have offered more without it. Few significant diagnosis-related (no gender-related) differences emerged regarding activities of daily living and quality of life. Lower quality of life can only partly be explained by greater disability (r=0.30-0.54). Therefore quality of life as a measurement of rehabilitation outcomes might be based both on physical status, disability and psychosocial factors in terms of positive and negative consequences.
Abstract: The purpose of the study is to investigate disability and quality of life in individuals with the characteristic symptoms of postpolio syndrome.
Abstract: The present study investigates progressive muscular dystrophy over a five year period. The purpose is twofold: to describe changes over time and to investigate relations between disability, coping and quality of life.
Abstract: This qualitative study investigated the lifetime illness experience of individuals with the 'late effects' of polio or post-polio syndrome. Fifteen individuals were interviewed twice about their illness experience and the interviews were transcribed verbatim. The empirical material first underwent a categorization process. The preliminary categories generated through this analysis were then condensed into broader categories which in the final analysis gave rise to the following temporal pattern or stages of the illness experience: (1) the acute phase of polio and subsequent treatment and care; (2) rehabilitation and care at institutions for the disabled; (3) adaptation to a new life; (4) living with the post-polio syndrome today, and finally, (5) memories of the past and apprehensions concerning the future. In spite of the difficult experiences of falling ill and slowly recovering from a life-threatening disease, these individuals have had a good life and accomplished most of their ambitions in the areas of work and family life. Their present psychosocial situation is complicated by the symptoms of the post-polio syndrome which make them more vulnerable to stress, but they are able to handle this burden except when any added strain makes it overwhelming. This potential vulnerability may sometimes express itself as a sudden flashback to traumatic polio experiences and it is therefore important that nurses are aware of the illness history of this patient group.
Abstract: The progressive muscular weakness brought on by muscular dystrophy causes the sufferer many problems in everyday life. Earlier studies in Sweden have shown that adults with hereditary muscular dystrophy often have difficulty in gaining access to rehabilitation. For this reason a special rehabilitation programme was drawn up and carried out, extending over a period of 18 months. The purpose of the study is to describe the participants' experience of social support in connection with the programme. Thirty-seven participants (21 women and 16 men) were interviewed. The analytical method was phenomenological, incorporating validation by independent judges. Nine overall themes emerged from the interviews: psychosocial support, meeting other people with muscular dystrophy, knowledge and learning, adjustment in daily life, coping with illness-related problems, adjustment at work, management of physical disability, medical examination and treatment, and involvement of relatives. The results indicate that the participants encountered staff with a sense of commitment and felt themselves to be 'seen and confirmed'. From the discussions and the contact with others in the same situation there arises a sense of affinity and a better understanding of one's own situation. There was appreciation of the education about the disease, its hereditary aspect, technical aids, grants and physical training. Hardly any of the participants spoke of knowing such things before. In conclusion there was approval of the received support, and recognition that persons with muscular dystrophy should be given access to recurrent rehabilitation.
Abstract: The study describes how 24 people with postpolio syndrome (PPS) cope with their problems. Two qualitative interviews were conducted, 6 weeks apart. The interviews were analysed inductively. It was found that the participants experienced many types of illness-related problems in their everyday lives. Furthermore, they describe the progressive deterioration in terms of a general weakness, fatigue and pain--these adding to the emotional stress. A variety of coping strategies are employed and the result of the analysis shows it to be impossible to carry out a clearly differentiated grouping into problem-focused and emotion-focused. By and large the participants have learnt to live with the changes and feel that they have 'a good life in spite of everything'.
Abstract: The aim was to describe the natural history of adults with hereditary muscular dystrophies, including myotonic dystrophy, with respect to muscular function, ventilation and electrocardiogram. In a prospective study, 46 subjects were followed over a period of five years. In 1991 and 1996, their muscle function was assessed according to an observation scheme and their lung vital capacity was measured by spirometer. Electrocardiograms were obtained in 1991, 1993 and 1996. Deterioration of muscular function was seen with regard to both the functional muscle tests and the vital capacity. The proportion of pathological electrocardiograms increased from 38% in 1991 to 54% in 1996 in the 26 patients with myotonic dystrophy without an increase in clinically detected cardiac abnormalities. Timely examinations using standard methods can reveal medically important information on deterioration, which often passes clinically unnoticed because of the insidious progress of the diseases.
Abstract: The problems, problem-focused coping and satisfaction with activities of daily living in a total of 119 persons with muscular weakness are described. The study encompasses three groups: 33 persons with various types of muscular dystrophy, 46 with myotonic dystrophy and 40 with symptoms relating to the post-polio syndrome. A self-report instrument for Assessment of Problem-focused Coping (APC) was used. Most of the problems reported were connected with mobility and transportation and work, but the subjects used problem-focused coping relatively infrequently and few differences were found between the different groups or between the sexes. The most widely used problem-focused coping strategy was 'Devices and tricks'. The highest degree of satisfaction was noted for personal care and the lowest for mobility and transportation. The APC provides information about patients' evaluation of everyday situations, forming a complement to functional measurements in the field of rehabilitation.
Abstract: Increasing muscular atrophy and joint instability in the post-polio syndrome (PPS) leads to muscle and joint pain. The aim of this study was to describe how persons with post-polio syndrome (PPS) perceive their pain and how the pain affects their everyday lives. The Multidimensional Pain Inventory (MPI-S) was used together with supplementary questions concerning location and verbal description of the pain. The study group comprised 37 persons with PPS who had had pain for an average of 19 years. Most commonly reported was pain from the joints of the extremities, followed by pain from the lower back. The verbal description suggests that pain is a palpable health problem for this study group. The results of the MPI-S show that women had the most pain and that the younger the persons are, the more the pain involves negative stress experiences. Activities such as outdoor work, social and other activities away from home involve difficulties, according to the results. The study group could manage their pain, experienced social support, and especially women managed to carry out household chores despite their pain. The MPI-S demonstrates acceptable reliability for this study group.
Abstract: This study describes the meaning of pain and its implications for everyday life in 35 persons with symptoms of post-polio syndrome. The mean age of the study group is 65 years and the sex ratio of men to women is 1.5:1. The study persons were interviewed on two occasions in their homes and answered a pain questionnaire. The result shows that everyday vocabulary is used to express pain experiences. The study persons normally answered that it hurt, although the interviewers used pain in their questions. The results show that the lower back is the most common location of pain. Joint pains are most common in the upper extremities. The pain is worst in the evening and at night, and tangibly affects the daily rhythm. Physical strain and climatic factors commonly provoke pain, whereas rest and heat give relief. The study show that interviews and pain questionnaire should be supplemented with questions on activities so as to gain a comprehensive view of the difficulties experienced in everyday life.
Abstract: A new self-report instrument, the Assessment Instrument of Problem-focused Coping (APC) developed from qualitative interviews, is described. This instrument provides knowledge of the patients' own competence in coping with activities of daily living (ADL), the patients' own assessment of what they experience as problems, and the extent to which they are satisfied with their ADL. The purpose of the study was to test the reliability of the instrument with regard to intra-rater reliability and internal consistency. The study group comprised 40 patients with muscular weakness and other symptoms relating to the postpolio syndrome. The result showed an acceptable internal consistency (alpha 0.70), which confirms the construct validity of the instrument. The test-retest showed that the stability over a period of time varied from low to high for a total of 28 items. At the same time, it is evident that the instrument does not achieve the aim of being a good evaluation instrument, because the stability over a period of time was unsatisfactory. The test-retest should be repeated with a larger test group in future research projects.
Abstract: Illness-related problems and coping were examined in 60 individuals with muscular dystrophy (MD) identified in a population survey of the county of Orebro, Sweden. In addition, the extent to which coping is related to quality of life (QoL) was investigated as was the impact of impairment and disability on the relation between coping and QoL. Emotion/appraisal-focused coping was utilized by respondents more than twice as often as problem-focused coping. High QoL was significantly correlated to "Stoic acceptance" and "Tried alternative treatment." Low QoL was associated with "Helpless/hopeless," "Anxious preoccupation," "Minimization," "Social comparison," "Establishment of control over everyday life," "Performs the task with the aid of an appliance" and "Accepts help or leaves it to others." When measures of impairment and disability were included in the analysis, the impact of these measures explained the association between coping and physical QoL by 16% to 43%.
Abstract: In the county of Orebro, Sweden, 32 individuals with myotonic disorders and 25 with other types of muscular dystrophy were examined. Disability was assessed with functional tests and standardized observations of muscle function (mainly based on those proposed by Dr. Brooke), a new self-administered questionnaire regarding the Activities of Daily Living (ADL) and the ADL staircase (based on Katz ADL index). The results of the different tests of disability were highly correlated. The Sickness Impact Profile and the Kaasa test were used for assessing the quality of life, and no significant differences were found between the groups of muscular dystrophy. In an explanatory factor analysis three main factors of disability were found. The factors "walk and move" and "finger function" were fair to good associated with the quality of life. This study offers an approach for research on the consequences of muscular dystrophy using established as well as new methods.
Abstract: All individuals in a Swedish county afflicted with any type of hereditary muscular dystrophy (MD) were identified and 57 (85 percent) of eligible individuals in the age range 16 to 64 were included in the study. Respiratory disturbances were estimated by means of spirometry and analysis of arterial blood gases, and 58 percent yielded abnormal results on at least one of these examinations. Elevated PCO2 was found more commonly than reduced forced vital capacity (FVC) and there was a moderate association between these parameters. Respiratory symptoms, most commonly breathlessness, were encountered in 79 percent. Pathologic ECG recordings were found in 21 individuals (37 percent). Conduction disturbances and affection of the myocard were most frequent in myotonic dystrophy. Quality of life was assessed by means of the Sickness Impact Profile instrument and the Kaasa test. The results showed that quality of life was significantly related to FVC and to the symptom of abnormal fatigue. Respiratory and cardiac parameters showed a greater number of significant correlations with measures of functional ability than with subjective well-being.
Abstract: There is no published research on coping with muscular dystrophy among adults. In the present study, two questionnaires, the Reaction to the Diagnosis of Cancer Questionnaire (RDCQ) and the Mental Adjustment to Cancer scale (MAC), were modified in order to measure coping with muscular dystrophy (MD). A total of 60 people (16-64 years) with diagnosed MD answered the questionnaires in two interviews including semi-structured questions. The replies to these questions were analysed by two independent judges on the basis of the RDCQ and MAC categories for coping. The purpose was twofold: to investigate if cancer-coping categories could be used for the classification of interview answers concerning coping with MD, and to gain knowledge about specific coping with MD. Analysis indicated that 82% of replies to semi-structured questions concerned with emotion/appraisal-focused coping with MD can be described by means of RDCQ and MAC categories. Eight new categories were developed to classify the remaining 18%: Anticipation, Creation of new life values, Minimization, Establishment of control over everyday life, Secretiveness, Fear, Social comparison and Coping with heredity. In addition, 997 replies were classified to represent problem-focused coping. The judges reached good agreement with respect to the proportions of replies in the respective coping categories. However, kappa (kappa) values were within the range of fair to good agreement.
Abstract: The epidemiology of neuromuscular diseases was studied in the county of Orebro, Sweden (study population 270,000). Several different sources of data were utilized, compared and validated. On the prevalence of day (January 1, 1988) 474 patients were identified. The rate per 100,000 population was 92 for the postpolio sequelae (PPS) and 84 for the other neuromuscular diseases (motor neuron disease 9, hereditary neuropathies 9, myoneural disorders 16, myotonic disorders 19, muscular dystrophies 20 and myositis 11). Of the patients with the PPS, 80% reported late-onset symptoms. On the basis of an expanded survey including all medical records in one health care district, the prevalence of the PPS was estimated to be 186/100,000 population.
