<p>The overall aim was to study and gain knowledge about what it means to live with muscular dystrophy and to study rehabilitation from the patient's perspective, among adults with muscular dystrophy in three Swedish counties: Örebro, Östergötland and Norrbotten. The thesis comprises two qualitative and three quantitative studies. Thirty interviews about illness experience were subjected to content analysis and 37 interviews about perceived support in rehabilitation were analysed according to phenomenological guidelines. Data were also collected by the Assessment of Problem-focused Coping (APC), the ADL Staircase, the Self-report ADL, the Mental Adjustment to Cancer Scale, the Sickness Impact Profile, the Psychosocial well-being questionnaire and the Quality of Life Profile. The APC was developed for assessment of problem-focused coping and also covers questions concerning the extent to which activities are experienced as problems and satisfaction with activities. The result shows that the experience of illness is largely similar in the three diagnostic groups (proximal MD, Myotonic muscular dystrophy, Myopathia distalis tarda hereditaria). The persons reported many restrictions of everyday activities, most often in mobility and transportation. Over half were dependent on other people in activities of daily living, and the illness was experienced mainly as having negative consequences for everyday life. A lower quality of life may be partly explained by a reduced capacity for activities. Problem-focused coping was used only to a limited extent, and 'Fighting spirit' was the dominant coping strategy. Rehabilitation was experienced as very valuable, particularly the education about the muscle disease, technical aids, grants and physical training. Over a five-year period, disability and quality of life of the study participants deteriorated significantly, and the dependence on other people increased. </p>

This thesis evaluates surgical correction in patients with paralytic scoliosis with emphasis on function and activity. The thesis includes four studies of 100 consecutive patients preoperatively evaluated and surgically corrected between 1992 and 1996 at Linköping University Hospital. Eighteen different diagnoses were represented. The postoperative follow-ups were at one year and in average seven years. Six patients dropped out during the first year and twelve during the long-term follow-up period. The assessments included general information, lung function, and measurements of radiographs, function and activity - seating posture, ADL, pain, care and need for rest. The patients or relatives view on the effects of surgery were evaluated in follow-up questionnaires. The preoperative results of the 100 patients described a heterogeneous group in terms of function and activity. Even when the patients were grouped into subgroups according to the Scoliosis Research Society classification, they remained heterogeneous. In patients who could understand verbal instructions assessments that needed co-operation could be used and in those who could not understand verbal instructions, assessments relied more heavily on measures of function and level of dependence. Preoperative results of weight distribution on the seating surface were explained by thoracolumbar/lumbar spinal imbalance and pelvic obliquity R2=0.45 (n=45). The one-year follow-up of 94 patients showed improvements in angle of scoliosis, sitting balance, weight distribution to the seating surface, seating supports in the wheelchair, time needed for rest. The results in subgroups were almost the same as in the whole group. The subjective results for patients or relatives in the follow-up questionnaire showed a positive outcome of surgery. In the comparison between the one-year follow-up and the long-term follow-up there were further improvements in sitting balance, ADL, and care given, but the angle of scoliosis was increased. These results were in line with patients’ and relatives’ assessments in the follow-up questionnaire and in the open-ended questions. Due to the heterogeneity of patients with paralytic scoliosis, irrespective of disorder, it is important to focus on different subgroups with regards to the patients’ total situation. The surgically corrected and stabilised spine resulted in the strength to keep the body upright with improvements in function, activity and possibilities to belong in social activities. Further improvements were shown between the one-year follow-up and the long-term follow-up. It is recommended that patients who have been surgically corrected for paralytic scoliosis are followed for more than one year.

The overall aim was to improve the knowledge and understanding of eating habits of older men with somatic diseases, and the men's perceptions about managing food-related habits, such as grocery shopping and cooking. A total of 67 men between 64 and 89 years of age were visited in their homes on two occasions with 1-2 weeks in between. The participants were diagnosed with one of the three diseases Parkinson’s disease, rheumatoid arthritis, or stroke. A food survey, with repeated 24-h recall, was used to assess food intake and meal patterns. Interviews with 18 participants were conducted with open-ended questions. The interviews were further analysed with a thematic framework approach.The findings showed that eating events were distributed over a 24-h period.Further, co-living men had a significantly larger number of eating events over the day (p=0.001). No differences in daily energy intake were observed between co-living and single-living men. Co-living men’s hot eating events were compared with those of single-living men more often cooked from fresh ingredients (p=0.001), including a greater mix of vegetables/roots (p=0.003).Thematic analysis revealed three different approaches to food-related activities(FRA), namely ‘Cooking as a pleasure’, describing joy in cooking; ‘Cooking as a need’, indicating no habits or skills in cooking; and ‘Food is served’, that is, being served meals by a partner. The men's approaches to FRA were affected in particular by gender-related roles, but also by changed life circumstances, activity limitations, personal interests, and a wish to maintain continuity and independence. Further adaptive strategies were used among the men in attempts to maintain continuity and independence in FRA. In conclusion, single-living older men, especially those with activity limitations, were identified as being a vulnerable group from a nutritional perspective. Further, health care efforts in promoting FRA should preferably be individualised with respect to the older man’s approach to these activities.

The overall aim was to study and gain knowledge about what it means to live with muscular dystrophy and to study rehabilitation from the patient's perspective, among adults with muscular dystrophy in three Swedish counties: Örebro, Östergötland and Norrbotten. The thesis comprises two qualitative and three quantitative studies. Thirty interviews about illness experience were subjected to content analysis and 37 interviews about perceived support in rehabilitation were analysed according to phenomenological guidelines. Data were also collected by the Assessment of Problem-focused Coping (APC), the ADL Staircase, the Self-report ADL, the Mental Adjustment to Cancer Scale, the Sickness Impact Profile, the Psychosocial well-being questionnaire and the Quality of Life Profile. The APC was developed for assessment of problem-focused coping and also covers questions concerning the extent to which activities are experienced as problems and satisfaction with activities. The result shows that the experience of illness is largely similar in the three diagnostic groups (proximal MD, Myotonic muscular dystrophy, Myopathia distalis tarda hereditaria). The persons reported many restrictions of everyday activities, most often in mobility and transportation. Over half were dependent on other people in activities of daily living, and the illness was experienced mainly as having negative consequences for everyday life. A lower quality of life may be partly explained by a reduced capacity for activities. Problem-focused coping was used only to a limited extent, and 'Fighting spirit' was the dominant coping strategy. Rehabilitation was experienced as very valuable, particularly the education about the muscle disease, technical aids, grants and physical training. Over a five-year period, disability and quality of life of the study participants deteriorated significantly, and the dependence on other people increased.

A comprehensive understanding is lacking of the experiences persons with acquired physical disabilities have of changes in their engagement in occupations and of the conditions influencing these experiences Furthermore, little is known about the experiences these people have of the rehabilitation process and whether the rehabilitation services satisfy their needs. Access to such knowledge would significantly add to the ability to design rehabilitation services intended to enhance participation in everyday life. The overall aim of this thesis was, therefore, to illuminate and enhance the understanding of how persons with acquired physical disabilities experienced their rehabilitation process and their possibilities to engage in occupations in everyday life. The thesis is comprised of five studies. The planning of the clients’ rehabilitation at hospital was explored through interviews with the clients (n=57) and the professionals (n=50). Interviews exploring how persons with physical disabilities experienced their rehabilitation process (n=15), their occupational lives in their homes (n=13) and the use of assistive devices (n =17) were analysed qualitatively. Data was also collected from persons with spinal cord injury (n =161) by the Impact on Participation and Autonomy questionnaire. The findings showed that the professionals used different strategies to encourage the clients to participate in the planning of the rehabilitation and that the strategies were based on traditions rather than on the individual clients’ desires to participate. The informants’ experiences reflected three parallel chains of rehabilitation over a period of time, a medical, a psychological and a social one. The influence of the different rehabilitation chains on how the clients’ lives turned out varied over time, and the professionals were predominantly involved in the medical rehabilitation chain. The informants’ experiences showed that their engagement in occupations in the home differed profoundly. Access to social support, which was provided under different conditions, was of decisive importance for their occupational engagement. The findings also showed that changes in the informants’ occupations in the home setting transformed the meaning of the home in general. The meaning of using assistive devices was experienced as manifold and double-edged. The incorporation of or resistance to assistive devices was understood as different approaches to adaptation with the same intention: to achieve desired occupational self-images. The majority of the informants perceived their participation in the life situation as sufficient but more than half reported one or more severe problems with participation. Access to social support in everyday occupations had a greater impact on predicting severe problems with participation than certain traditional health related factors or aspects related to the individual. To conclude, the findings indicate that the rehabilitation services need to be better able to adapt to clients’ desires to participate in the planning of their rehabilitation, and designed to satisfy the various needs the clients experience throughout the rehabilitation process. It was revealed that the societal and social environment, as manifested through social interactions, are of central importance in understanding the consequences of and possibilities to engage in occupations supporting participation in everyday life.

No description available.

Bakgrund: När människor drabbas av venösa bensår kan vardagen drastiskt förändras. Ett stort antal individer drabbas av bensår och incidensen ökar med åldern. För att kunna ge en god omvårdnad behöver vårdpersonalen ökade kunskaper för att förstå bensårens inverkan på individens dagliga liv. Syfte: Syftet med studien var att beskriva hur det är att leva med venösa bensår. Metod: Studien utfördes som en allmän litteraturstudie. Fjorton empiriska studier ingick. Resultat: I samband med bensår förekommer en rad faktorer som på olika sätt påverkar det dagliga livet. Framträdande faktorer var smärta, svullna ben, lukt och läckage, rädsla och välbefinnande. Smärta var det funktionella hälsotillstånd som hade störst inverkan på det dagliga livet. Smärtan ledde till störd nattsömn, försämrad rörlighet och social isolering. Slutsats: Patienter med smärtsamma bensår har svårt att leva det liv som de önskar. Om distriktssköterskan synliggör sambandet mellan dagligt liv och funktionellt hälsotillstånd, kan specifika omvårdnadsåtgärder genomföras. Patienterna kan då uppnå ett önskvärt dagligt liv oavsett funktionellt hälsotillstånd. / Background: When people suffer from venous leg ulcers, their everyday life can be drastically changed. A large number of individuals suffer from leg ulcers and the incidences increase with age. In order to provide good nursing, care staff need more knowledge in order to understand the effects of the ulcers on the individual's daily life. Purpose: The purpose of this study was to describe what it is like to live with venous leg ulcers. Method: The study was carried out as a general literature review. Fourteen observational studies were included. Results: In connection with leg ulcers there are a number of factors that affect the patients’ daily lives in different ways. Important factors were pain, swollen legs, odor and leakage, fear and well-being. Pain was the functional state of health which had the greatest impact on daily life. The pain led to interrupted sleep, impaired mobility and social isolation. Conclusion: Patients with painful leg ulcers have difficulty living the life they desire. If the district nurse makes the connection between daily life and functional health status explicit, specific care measures can be implemented. Then patients can achieve a desirable everyday life regardless their functional state of health.

The purpose of this thesis was to examine coronary heart disease (CHD) risk factors and secondary complications in individuals with spinal cord injury (SCI). In particular, this thesis was organized around the central theme of adiposity, which is a prevalent complication following SCI. Study 1 focused on understanding the relationships between activities of daily living (ADL) and CHD risk factors including central adiposity, lipoproteins, and triglycerides. Using generalized linear models, while controlling for pertinent covariates such as sex, age, and leisure time physical activity (LTPA), it was found that Mobility ADL (wheeling and transferring) were negatively associated with total and LDL-cholesterol. Study 2 examined whether individuals who considered themselves to be overweight subsequently had less favourable subjective well-being, and were more likely to report specific secondary complications than individuals who did not consider themselves to be overweight. Logistic regression analysis and partial correlations controlling for pertinent covariates such as sex, age, and injury severity, revealed that individuals who considered themselves to be overweight reported greater pain, depression, overuse injuries, and fatigue, and less satisfaction with life than individuals who did not consider themselves to be overweight. In summary, the findings suggest that a) participation in specific types of ADL (i.e. Mobility ADL) are associated with a lower CHD risk and should be further explored and that b) elevated perceived adiposity is associated with specific secondary complications and lower subjective well-being. Overall thesis findings support the overwhelming evidence of the benefits of daily physical activity and maintaining a healthy bodyweight in the SCI population. / Thesis (Master, Kinesiology & Health Studies) -- Queen's University, 2009-05-28 11:40:32.574

The "International Classification of Functioning, Disability and Health" (ICF) is a model that classifies health and health-related function. Of the ICF domains, least is known about participation. Although a few measures have been developed in English that tap the construct "Participation", none exist in Spanish. The Reintegration to Normal Living (RNL)-Index is the measure of reference to evaluate participation. The general objective of the present study was to translate, culturally adapt, and assess the psychometric properties the RNL-Index in Spanish for use in Spain. The translation and the cultural adaptation of the RNL-Index consisted of a five-step process, leading to the Spanish version of the RNL-Index (SRNL-Index). Psychometric evaluation consisted of a cross-sectional study design, with a longitudinal design used for test-retest evaluation. Thirty-two subjects with stroke and 36 with total knee arthroplasty completed the SRNL-Index twice, as well as the Six Minute Walk Test (6MWT), the Short-Form 36 Health Survey (SF-36), and for stroke subjects, the Barthel Index (BI). Descriptive statistics, one-way analysis of variance and post-hoc t tests were calculated, as well as Cronbach's alpha, Pearson's, and Intraclass correlation coefficients. The SRNL-Index was found to be internally consistent. Test-retest reliability was quite poor, being moderately low for the TKA sample and moderate for the stroke sample. Discriminant validity was demonstrated by the correlations between the SRNL-Index's Perception of Self and Daily Activity subscales with the Mental and Physical Component Summary scores of the SF-36. The SRNL-Index has convergent validity as shown by the high correlations between of the SRNL-Index and the 6MWT. Known-groups validity was shown in people with stroke grouped by Barthel Index scores, and in both samples when grouped according to gait speed. The SRNL-Index demonstrated acceptable validity and internal reliability for subjects with stroke and total knee arthroplasty. However, further studies are needed to reassess external validity, reliability, and responsiveness in other populations and other Spanish-speaking countries.

Background: Subjective Memory Concerns (SMC) in seniors can be one of the earliest indicators of future dementia. There is a lack of research into the nature of these concerns and functional impairments. Methods: This retrospective secondary analysis gathered data from 67 healthy seniors aged 65+ using neuropsychological tests, memory concern questionnaires and daily functioning scales. Informants corroborated memory concerns and daily functioning. Participants comprised two groups: SMC if worried about their memory and Not Concerned about Memory if not. Results: People with SMC report more difficulty with word finding, remembering appointments, learning to use new equipment, and remembering details of social and personal events. Informants perceive word finding difficulties and minor problems with vocational abilities and bowel/bladder control in SMC participants. Conclusions: The SMC group primarily reports social difficulties. Further research is required to create a comprehensive list of cognitive concerns, which will ultimately improve care of the SMC population. Contexte: Les préoccupations subjectives de mémoire (PSM) chez les aînés peuvent être indicatives d’une démence future, bien qu’il existe un manque d’information sur les préoccupations et l’effet fonctionnel. Méthodes: Une analyse rétrospective secondaire de questionnaires de mémoire, de tests neuropsychologiques, et d’échelles fonctionnelles a été entreprise auprès de 67 personnes, en bonne santé, âgées de 65 ans et plus. Les aidants naturels ont pu appuyer les préoccupations cognitives et le niveau de fonctionnement chez deux groupes de participants: ceux avec préoccupations ou non. Résultats: Les participants PSM relèvent des difficultés de manque du mot, de rappel (rendez-vous, événements sociaux), et d’utilisation de nouveaux équipements. Les aidants naturels ont aussi trouvé de légères difficultés au travail et au niveau du contrôle intestinal et urinaire. Conclusions: Les PSM identifient principalement des lacunes au niveau social. Les recherches devront viser l’identification d’une liste exhaustive des préoccupations afin de pouvoir octroyer de meilleurs soins.