A doença de Alzheimer (DA) é a demência mais prevalente entre os idosos, com manifestações como alterações cognitivas, comportamentais e funcionais. A presença de sintomas neuropsiquiátricos é frequente na demência e pode resultar em sofrimento para os pacientes e seus familiares, além de ocasionar sobrecarga para quem cuida. É comum o idoso apresentar DA associada à demência vascular, caracterizando a demência mista (DM). Assim, o objetivo geral deste estudo foi: analisar a relação entre a sobrecarga do cuidador familiar, o desempenho funcional e a presença de sintomas neuropsiquiátricos em idosos com diagnóstico médico de DA ou DM, atendidos em um Ambulatório de Geriatria e Demências de um Hospital Geral Terciário. Trata-se de um estudo quantitativo, não experimental, descritivo, transversal e exploratório, realizado com 96 idosos com DA ou DM e seus respectivos cuidadores familiares. Para a coleta de dados, utilizaram-se um questionário para caracterização dos idosos e de seus cuidadores, o Índice de Katz, a Escala de Lawton e Brody, o Inventário Neuropsiquiátrico (NPI) e a Escala de Sobrecarga do Cuidador. Quanto aos idosos, 68,7% eram mulheres, média de idade 80,8 anos, 50,0%, viúvos(as), 82,3%, aposentados; 56,2% com diagnóstico de DA e 43,7%, com DM; 43,7%, com CDR1 (demência leve). No desempenho para as atividades básicas de vida diária (ABVDs), 70,8% eram dependentes para uma ou mais funções e 29,2% independentes; nas atividades instrumentais de vida diária (AIVDs), 74,0% apresentaram dependência parcial. Houve associação entre os estágios da demência e o desempenho dos idosos para as ABVDs (p<0,01) e as AIVDs (p<0,01), evidenciando que quanto maior a gravidade da demência maior a dependência dos idosos. Quanto aos cuidadores, 90,6% eram mulheres, média de idade de 56 anos, 65,6%, casados(as); 79,2%, cuidadores primários, 70,8% cuidavam do pai/mãe e 64,6% moravam com o idoso. Os sintomas neuropsiquiátricos mais prevalentes entre os idosos foram apatia/indiferença (63,5%), disforia/depressão (59,4%), agitação/agressividade (50,0%) e comportamento motor aberrante (50,0%), com média de 5,0 por idoso. Identificou-se forte correlação (r=0,82) entre o escore total do NPI e o escore total do Inventário Neuropsiquiátrico Desgaste (NPI-D), ou seja, quanto maiores a frequência e a gravidade dos sintomas neuropsiquiátricos apresentados pelos idosos maior é o desgaste do cuidador (p<0,01) e forte correlação (r=0,80) entre o escore total do NPI-D e o número de sintomas neuropsiquiátricos, o que indica que quanto maior o número de sintomas neuropsiquiátricos maior é o desgaste do cuidador (p<0,01). A média de sobrecarga dos cuidadores foi de 25,2 pontos, e 48,9% deles apresentaram sobrecarga pequena. Evidenciaram-se maiores médias de sobrecarga para os que cuidavam de idosos com dependência para as ABVDs (27,2) p=0,04 e para os totalmente dependentes para as AIVDs (31,4), p=0,03. Houve moderada correlação (r=0,53) entre o escore total do NPI e o escore total na escala de sobrecarga do cuidador, mostrando que quanto maior a frequência e a gravidade dos sintomas neuropsiquiátricos maior é a sobrecarga do cuidador (p<0,01). Conhecer a relação entre as variáveis estudadas poderá subsidiar o planejamento da assistência aos idosos com demência e aos seus cuidadores familiares / Alzheimer\'s disease (AD) is the most prevalent dementia among elderly individuals with cognitive, behavioral and functional alterations. The presence of neuropsychiatric symptoms are common in dementia and may cause distress in patients and their families and overload caregivers. It is common individuals to present AD associated with vascular dementia, characterizing mixed dementia (MD). Therefore, this study\'s general objective was: to analyze the relationship between family caregiver overload and the presence of neuropsychiatric symptoms and the functional performance of elderly individuals with a medical diagnosis of AD or MD cared for in an Outpatient clinic of Geriatrics and Dementia of a Tertiary General Hospital. This non-experimental, qualitative, descriptive, cross-sectional and exploratory study was conducted with 96 elderly individuals with either AD or MD and their respective family caregivers. A questionnaire was used to characterize the participants and their caregivers together with Katz Index, Lawton and Brody Scale, the Neuropsychiatric Inventory (NPI), and the Caregiver Strain Index to collect data. A total of 68.7% of the elderly individuals were women, aged 80.8 years old on average, 50.0% were widowed, 82.3% were retired, 56.2% were diagnosed with AD and 43.7% with MD, while 43.7% presented CDR1 (mild dementia). In regard to basic activities of daily living (BADL), 70.8% depended on assistance to perform one or more tasks while 29.2% were independent. In regard to instrumental activities of daily living (IADL), 74.0% presented partial dependency. Association was found between the stage of dementia and the performance of BADL (p<0.01) and IADL (p<0.01) showing that the more severe the dementia, the greater the dependence of elderly individuals. In regard to caregivers, 90.6% were women, 56 years old on average, 65.6% were married, 79.2% were the primary caregivers, 70.8% cared for the father/mother, and 64.6% lived together with the elderly individual. The most prevalent neuropsychiatric symptoms among elderly individuals included apathy/indifference (63.5%), disphoria/depression (59.4%), agitation/aggressiveness (50.0%), and aberrant motor behavior (50.0%), with a mean of 5.0 per elderly individual. Strong correlation was identified (r=0.82) between the NPI total score and the total score obtained Neuropsychiatric Inventory - Distress (NPI-D), that is, the more frequent and severe the neuropsychiatric symptoms presented by the elderly individual, the higher the caregiver\'s distress (p<0.01). Strong correlation (r=0.80) was also found between the NPI-D total score and the number of neuropsychiatric symptoms indicating that that the higher the number of neuropsychiatric symptoms, the higher the caregiver distress (p<0.01). The average distress among caregivers was 25.2 points and 48.9% of them presented mild distress. Higher means of overload were found among those providing care to individuals requiring assistance to perform BADL (27.2) p=0.04 and for those totally depend on IADL (31.4), p=0.03. Moderate correlation was found (r=0.53) between the NPI total score and the total score obtained in the caregiver strain scale showing that the more frequent the neuropsychiatric symptoms, the higher the caregiver overload (p<0.01). Identifying the relationship among the studied variables can support the planning of care delivery to elderly individuals with dementia and their family caregivers

Antalet höftfrakturer ökar med en allt åldrande befolkning. För individen kan det medföra psykiska och fysiska konsekvenser med risk för bestående funktionsnedsättning. Återhämtningen och rehabiliteringen är inte avslutad vid utskrivning utan fortsätter under en längre tid. Studiens syfte var att undersöka hur den äldre patienten med höftfraktur efter hemgång upplevde dagliga aktiviteter med fokus fysisk aktivitet. Metoden som användes var en allmän litteraturstudie med inspiration från kvalitativ analys i artikelbearbetningen. Resultatet beskrevs utifrån kategorierna Upplevelsen av begränsningar, Upplevelsen av minskad självständighet och Upplevelsen av att anpassning krävs. De äldre upplevde begränsningar efter höftfrakturer som nedsatt rörelseförmåga och fallrädsla vilket kunde resultera i en isolerad tillvaro med minskad självständighet i daglig- och fysisk aktivitet. Det psykiska måendet påverkades negativt till följd av begränsningar med känslor av frustration och nedstämdhet. Information om tiden efter höftfrakturen ansågs bristande. Ett behov av anpassning infann sig med tillämpning av olika strategier för att klara aktiviteterna. Litteraturstudiens resultat synliggör att återhämtningen var en lång process, präglad av begränsningar i utförandet av aktiviteter. / The number of hip fractures increases with an aging population. For the individual, it can have psychological and physical consequences with the risk of permanent disability. The recovery and rehabilitation is not completed at discharge but continues for a longer time. The aim of the study was to investigate how the elderly patient with hip fracture after returning home experienced daily activities focusing on physical activity. The method used was a general literature study with inspiration from qualitative analysis in the article processing. The result was described based on the categories The experience of perceived limitations, The experience of reduced independence and The experience of required adaptation. The elderly experienced limitations on hip fractures such as reduced mobility and fear of falling, which could result in an isolated existence with reduced independence in daily- and physical activity. The mental attitude was adversely affected by limitations with feelings of frustration and depression. Information about the time after the hip fracture was considered lacking. A need to adapt occurred with the application of different strategies to cope with activities. The results of the literature study shows that the recovery was a long process, characterized by the limitations in the performance of activities.

A reabilitação psicossocial, no contexto da Reforma Psiquiátrica, centrou o cuidado na pessoa com diagnóstico de transtorno mental considerando a sua experiência com o sofrimento, a partir de ações coletivas e intersetoriais, rompendo com a lógica hegemônica do cuidado centrado na doença, e, a terapia ocupacional, apoiou este rompimento, pois, suas ações voltadas para o cotidiano na busca da inserção social e autonomia, faz uma forte relação com esta mudança. O objetivo geral do presente estudo foi verificar como a terapia ocupacional contribui para a reabilitação psicossocial de pessoas com diagnóstico de transtorno mental usuárias de Centros de Atenção Psicossocial. Os objetivos específicos foram identificar as estratégias de cuidado utilizadas pelos terapeutas ocupacionais junto a essas pessoas, avaliar suas habilidades de vida independente e o seu funcionamento ocupacional, e, relacionar as estratégias de cuidado, com as habilidades de vida independente e o funcionamento ocupacional. Para isso, optou-se pelo método misto, por meio da estratégia de triangulação concomitante. A pesquisa foi desenvolvida em três Centros de Atenção Psicossocial de três cidades do interior do estado de São Paulo, com a participação de 5 terapeutas ocupacionais, 47 usuários e seus respectivos familiares e/ou responsáveis. Os terapeutas ocupacionais responderam a uma entrevista. Os usuários responderam um questionário sociodemográfico, a Autoavaliação do Funcionamento Ocupacional e foram também entrevistados. Os familiares e/ou responsáveis pelos usuários, responderam ao Inventário de Habilidades de Vida Independente para Pacientes Psiquiátricos. As entrevistas foram gravadas, transcritas, sintetizadas, e, os conteúdos, organizados em categorias conforme analogias e características comuns e analisados a luz do método qualitativo descritivo. Os dados obtidos através dos instrumentos foram organizados na forma de um banco de dados criado para este fim no software SPSS 16.0 e analisados a luz da estatística descritiva. Os resultados mostraram que as estratégias de cuidado utilizadas pelos terapeutas ocupacionais são comuns a outros núcleos profissionais, seguindo a premissa da integralidade, singularidade, interdisciplinaridade e intersetorialidade, e, os usuários, apresentaram um bom nível de habilidades de vida independente e bom funcionamento ocupacional, embora tenham apresentado dificuldade em alguns aspectos, como realizações no trabalho, no lar e no cotidiano, incapacidade física e falta de objetivos para o futuro, entre outros, necessitando assim de assistência focada nesses aspectos. Relataram contribuições da terapia ocupacional nas atividades diárias, destacando auxílio nas atividades cotidianas e possibilidade de inserção social pelo trabalho e no tratamento. Os terapeutas ocupacionais apontaram que suas estratégias contribuem para a compreensão e ampliação do cotidiano dos usuários, transpondo o espaço físico do serviço. Desta forma, pode-se considerar que a terapia ocupacional contribui para a produção de cuidado em saúde mental, tanto para as habilidades de vida independente, quanto para o funcionamento ocupacional, tópicos importantes na busca da reabilitação psicossocial / Psychosocial rehabilitation, in the context of the Psychiatric Reform, has centered care into people diagnosed with mental disorder, using collective and intersectoral actions, considering their experience of suffering, thus breaking with the hegemonic logic of disease-focused care. Occupational therapy has supported this break, as its actions targeting the daily life to achieve social inclusion and autonomy, are strongly related to this change. This study aimed to determine how occupational therapy contributes to the psychosocial rehabilitation of people with diagnosis of mental disorder, users of Mental Health Services. The specific objectives were to identify the care strategies used by occupational therapists with these people, evaluate their independent living skills and their occupational functioning, and relate the care strategies with the independent living skills and the occupational functioning. Mixed methods approach was used, through the concurrent triangulation strategy. The research was conducted in three Mental Health Services in three cities in the interior of the São Paulo state, with participation of five occupational therapists, 47 users and their family members and/or guardians. Occupational therapists were interviewed. Users answered a sociodemographic questionnaire, the Self-Assessment of Occupational Functioning and were also interviewed. Users\" family members and/or guardians responded to the Independent Living Skills for Psychiatric Patients instrument. Interviews were recorded, transcribed and synthesized. The content was organized into categories according to analogies and common characteristics and analyzed using descriptive qualitative method. The data obtained through the instruments were organized in a database created for this purpose in SPSS 16.0 software and analyzed using descriptive statistics. Results showed that the care strategies used by occupational therapists are common to other professional groups, following the premise of comprehensiveness, uniqueness, interdisciplinary and intersectoral approach. Users showed a good level of independent living skills and good occupational functioning, although they had difficulties in some respects, as achievements at work, at home and in everyday life, physical disability and lack of goals for the future, among others, thus requiring assistance focused on these aspects. They reported contributions of occupational therapy in daily activities, highlighting benefit in daily activities and possibility of social insertion through the work and treatment. Occupational therapists indicated that their strategies contribute to the understanding and expansion of users\" daily lives, transposing the physical space of the health service. Thus, it can be considered that occupational therapy contributes to the production of care in mental health, both for independent living skills and for the occupational functioning, important topics in the search of psychosocial rehabilitation

Submitted by Fabíola Silva (fabiola.silva@famerp.br) on 2017-02-21T18:00:50Z No. of bitstreams: 1 camilaalinelazaro_dissert.pdf: 832681 bytes, checksum: ec140f633900c014aa6ef9576469ca45 (MD5) / Made available in DSpace on 2017-02-21T18:00:50Z (GMT). No. of bitstreams: 1 camilaalinelazaro_dissert.pdf: 832681 bytes, checksum: ec140f633900c014aa6ef9576469ca45 (MD5) Previous issue date: 2016-10-27 / INTROTUCTION: Leprosy is an infectious disease, which presents a slow evolution and signs on the skin and peripheral nerves are manifested. It represents a public health problem that can lead to deficiencies, which generate the limiting activities of the affected people and can bring drastic changes and result in several difficulties. OBJECTIVE: The aim of this study is to verify the presence and degree of activity limitations assessed by the scale Screening of Activity Limitation and Safety Awareness (SALSA) drug after discharge of patients who had leprosy. METHODOLOGY: This is a cross-sectional descriptive study, which was conducted a survey of activity limitation data, through semi-structured interviews and the use of screening scale of Activity Limitation & Safety Awareness (SALSA), applied in 59 patients who were in High drug treated from 2001 to 2013 in the counties of Jaci and Mirassol in the state of São Paulo. RESULTS: 98 people treated in the period, 59 (60.20%) were interviewed, 30 (50.80%) males, 29 (49.20) women and the age ranged from 21 to 88 years, with dp (12.56), average (58.83), medium (61). Thus, it was verified that of the 59 patients the greatest difficulty is the movement of upper limbs and the risks although underreported appeared in self-care and movement of the upper limbs. CONCLUSION. It was concluded that was possible to realize that the individuals still face difficulties in their daily lives to perform some functions, requiring some means of intervention and / or orientation to base and enable the improvement of their quality of life. / INTRODUÇÃO: A hanseníase é uma doença infectocontagiosa, que apresenta uma evolução lenta e se manifesta por sinais na pele e nervos periféricos. Representa um problema de saúde pública que pode levar a deficiências que gera a limitação de atividades dos acometidos, podendo trazer mudanças drásticas e acarretar diversas dificuldades. OBJETIVO: O objetivo deste estudo é verificar a presença e o grau da limitação de atividades avaliada pela escala Screening of Activity Limitation and Safety Awareness (SALSA) pós-alta medicamentosa de pacientes que tiveram hanseníase. CASUÍSTICA E MÉTODO: Trata-se de um estudo descritivo transversal, no qual foi realizado um levantamento de dados de limitação de atividades, por meio de entrevistas semiestruturadas e uso da escala Screening of Activity Limitation & Safety Awareness (SALSA), aplicadas em 59 portadores que se encontravam em alta medicamentosa tratados no período de 2001 a 2013 nos municípios de Jaci e Mirassol no interior do Estado de São Paulo. RESULTADOS: De 98 pessoas tratadas no período, 59(60,2%) foram entrevistadas, sendo 30(50,8%) homens, 29 (49,20) mulheres e a idade variou de 21 a 88 anos, apresentando dp (12,5), média (58,8), mediana (61,0). Verificou que dos 59 pacientes a maior dificuldade é a movimentação de membros Superiores e que os riscos apesar de pouco relatados apareceram no autocuidado e movimentação de membros superiores. CONCLUSÃO. Concluiu-se que foi possível perceber que os indivíduos ainda se deparam com dificuldades na sua vida cotidiana para desempenhar algumas funções, necessitando de algum meio de intervenção e/ou orientação para poderem se embasar e possibilitar a melhoria da sua qualidade de vida.

Abnormalities in lumbopelvic rhythm (LPR) play a role in occurrence/recurrence of low back pain (LBP). The LPR before spinal fusion surgery and its changes following the surgery are not understood. A repeated measure study was designed to investigate timing and magnitude aspects of LPR in a group of patients (n = 5) with LBP before and after a spinal fusion surgery. Participants completed a forward bending and backward return task at their preferred pace in the sagittal plane. The ranges of thoracic and pelvic rotations and lumbar flexion (as the magnitude aspects of LPR) as well as the mean absolute relative phase (MARP) and deviation phase (DP) between thoracic and pelvic rotations (as the timing aspects) were calculated. Thoracic, pelvic, and lumbar rotations/flexion were respectively 2.19° smaller, 17.69° larger, and 19.85° smaller after the surgery. Also, MARP and DP were smaller during both bending (MARP: 0.0159; DP 0.009) and return (MARP: 0.041; DP: 0.015) phases of the motion after surgery. The alterations in LPR after surgery can be the result of changes in lumbar spine structure due to vertebral fusion and/or new neuromuscular adaptations in response to the changes of lumbar spine structure. The effects of altered LPR on load sharing between passive and active components of lower back tissues and the resultant spinal loads should be further investigated in patients with spinal fusion surgery.

Currently a lack of guidelines for Criterion B of the DSM-IV-TR (American Psychiatric Association, 2000) hampers diagnosis of children with developmental coordination disorder (DCD). The Performance of Activities of Daily Living Questionnaire (PADL-Q; Dewey, Larkin & Summers, 2004) is a new parent-reported instrument developed to quantify the level of interference in activities of daily living (ADL) experienced by children with DCD and was tested for its efficacy in addressing Criterion B. Thirty-two children aged between 5 and 10 years comprising two matched groups, 16 with DCD (8 boys and 8 girls) and 16 without DCD (8 boys and 8 girls) participated in the study. The aim of the research was to investigate the ability of the PADL-Q to identify differences between children with and without DCD. A further 5 children, in the same age range, who did not have DCD added data that was used to ascertain relationships between the constituent assessments. All children were tested using the MAND (McCarron, 1982) whilst their parents completed the PADL-Q. A set of Tests of Activities of Daily Living (TADL) tasks were devised for the children to perform that further validated parents ratings of children?s ADL performance. A Group x Gender MANCOVA, controlled for age, of the PADL-Q total scores demonstrated that there was a significant difference between the children with and without DCD (F(3,25) = 9.44, p < .001; Wilks' lambda = 0.47). Follow-up univariate tests showed a Group x Gender interaction and simple main effects of this interaction indicated that the PADL-Q did not discriminate between the DCD and non-DCD boys. The ability of the PADL-Q to identify DCD was explored in the concurrent validity against the MAND when using a diagnostic cut-off point. The PADL-Q demonstrated 100% specificity and positive predictive values but only 19% sensitivity and 62% negative predictive values. There was a moderately strong relationship (r = .71), between the PADL-Q total score, considered a measure of Criterion B, and the MAND, a measure of Criterion A (DSMIV- TR, 2000). A two factor (Group x Gender) ANCOVA, controlled for age, of the TADL items revealed a statistically significant effect for DCD only (F(1,19) = 34.65, p < .001). There was a moderate correlation (r = -.64) between the PADL-Q total score and the TADL tasks, indicating that parent-reports are supported by their child?s performance. The PADL-Q appears to have potential as part of the DCD diagnostic process; however, further refinement on a larger sample is necessary before it can be used as an easily-administered guide to ADL performance levels in children.

Doctor of philosophy (PhD) / Abstract As one of the most culturally diverse countries in the world, Australia has a high proportion of minority communities. However, its ageing population, particularly within these ethnic minorities, faces a range of barriers or difficulties in gaining access to and using health and aged care services. This study aims to identify the acculturation factors that affect the health status of Iranian-born elderly immigrants to Australia and their utilisation of health and community aged care services. The results of this study will be of value to Iranian elders, their families, and Australian aged health care service providers. The findings could also contribute towards enriched multicultural policy and improved social fairness, access to services, and equity for the aged from different ethnic backgrounds. 302 Iranian migrants aged 65 years who had lived in the Sydney Metropolitan area for at least six months were surveyed via a written questionnaire, face-to-face interviews, and telephone interviews. The results were analysed using SPSS and then compared to the findings from a 1999 survey of NSW elderly. The results indicate that Iranian migrants suffer higher levels of psychological distress and are more limited in their physical functioning than the general population of older Australians. They are in greater need of assistance with activities of daily living, have a lower sense of wellbeing, and are far less likely to utilise aged care services. Iranian migrant who do not speak English at home experience these disadvantages to an even greater extent English language proficiency was the only acculturation factor found to affect whether Iranian elderly utilised health and community aged care services, while ability to engage in activities of daily living (ADL) was the only health variable associated with their utilisation of community supportive aged care services. This variable did not predict the use of community aged care services in the broader sample of NSW respondents. Since limited proficiency in English placed elderly Iranian migrants at greater health risk and impeded their access to necessary assistance, the findings suggest that they would clearly benefit from English classes and from access to health and community care services and information regarding these services in the Farsi language.

<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.</p><p>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).</p><p>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.</p><p>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.</p>

<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.