Tid, rum och självbestämmande : Möjligheter och hinder i vardagen för äldre personer med intellektuell funktionsnedsättning på gruppboende

People with intellectual disability are living longer, which creates new demands for the support and care of this target group. Participation and autonomy at all ages, regardless of functional capacity, are cited in legislation and among the key objectives of disability policy. As a group, older people with intellectual disability have previously been almost invisible in both policy documents and research. Information regarding this group is thus limited, and more systematic knowledge is needed about older people with intellectual disability, their daily lives, and especially their opportunities for autonomy. The purpose of this thesis is to learn more about the role of influence and autonomy in everyday life from the perspective of older people with intellectual disability living in group homes. This will be achieved by studying situations in which opportunities and obstacles arise for these residents to exercise their autonomy in daily life, and identifying and analysing how autonomy is expressed in the meeting between residents and staff. The study applies an ethnographic approach, using methods including field studies with observations and videotaped meetings between residents and staff. The sample consists of residents aged 65 and over and staff at three group homes for people with intellectual disability. One resident at each group home is followed in greater depth. The analysis uses the time-geographic concepts of project, activity and restrictions in order to clarify where and when different projects are carried out, as well as who has the power to determine what is to be carried out. Interaction analysis is used to analyse the videotaped meetings between residents and staff. The analysis is based on Goffman’s interaction order and interaction rituals, theories about turntaking, both verbal and non-verbal, and theories about power and counter-power. In accordance with Goffman’s framework concept, the starting point is the concrete framework that reflects spatiality, which in turn becomes a way to place the more abstract framework of the situation into a specific context. Two major projects were identified: Sleep and Rest and Meals. The analysis reveals projects that are governed by the resident’s own preferences (individual projects) and projects that are governed to a greater degree by the staff’s objectives and opportunities (institutional projects). Some guidance also derives from municipal decisions and guidelines (organizational projects). Many projects were carried out based on staff decisions and objectives, but in actual practice many projects failed to get off the ground. Some projects were at risk of failure until something happened or someone intervened and thereby rescued the project so that it could be implemented. The interactional analysis perspective shows how autonomy is constructed in the meeting. Autonomy is situation-bound, and shifts more on the basis of context than in relation to specific individuals. The study includes decision situations mainly between autonomy and its opposite, paternalism, which are viewed as extremes on a continuum. However, certain factors lead to stronger autonomy in certain situations. When a resident can define the situation, they also have greater power to determine the outcome. In situations characterized by paternalism, the staff have a preferential right of interpretation and the power to decide, both on the basis of their knowledge and because of the asymmetrical interdependence that characterizes the resident-professional relationship. Such situations are also governed by the rules and procedures of the group home to a greater degree than those situations in which the resident exercises autonomy. The thesis discusses strategies that could increase the residents’ opportunities for autonomy. Greater communication skills among staff can be viewed as a step on the path toward greater autonomy for the residents. Staff have the potential to eliminate obstacles, to strengthen inadequate skills or create new ones by providing choices and assistive devices, and to exercise an affirmative approach.

Exercise intervention in pediatric patients with solid tumors: The PAPEC trial

The randomized controlled trial ‘Physical Activity in Pediatric Cancer’ (PAPEC) determined the effects of an in-hospital exercise intervention combining aerobic and muscle strength training on pediatric cancer patients with solid tumors undergoing neoadjuvant chemotherapy. Methods. Participants were allocated to an exercise (n=24, 17 boys; mean±SEM age 10±1y) or control group (n=25, 18 boys; 11±1y). Training included three sessions/week for 19±2 weeks. Participants were assessed at treatment initiation, termination, and two months after end-treatment. The primary endpoint was muscle strength (as assessed by upper and lower-body five-repetition-maximum (5RM) tests). Secondary endpoints included cardiorespiratory fitness, functional capacity during daily life activities, physical activity, body mass and body mass index, and quality of life. Results. Most sessions were performed in the hospital’s gymnasium. Adherence to the program averaged 68±4% and no major adverse events or health issues were noted. A significant interaction (group*time) effect was found for all 5RM tests. Performance significantly increased after training (leg press: 40% (95% CI=15–41 kg); bench press: 24% (95% CI=6–14 kg); lateral row 25% (95%CI=6–15 kg)), whereas an opposite trend was found in controls. Two-month post values tended to be higher than baseline for leg (P=0.017) and bench press (P=0.014). In contrast, no significant interaction effect was found for any of the secondary endpoints. Conclusion. An in-hospital exercise program for pediatric cancer patients with solid tumors undergoing neoadjuvant treatment increases muscle strength despite the aggressiveness of such therapy. Key words: Cancer, exercise, muscle strength, fitness, quality of life.

Design of a myofascial therapy protocol for the treatment of hemophilic arthropathy of the knee and ankle

Hemophilic arthropathy limits daily life activities of patients with hemophilia, presenting with clinical manifestations such as chronic pain, limited mobility, or muscular atrophy. Although physical therapy is considered essential for these patients, few clinical studies have demonstrated the efficacy and safety of the various physiotherapy techniques. Physical therapy may be useful for treating hemophilic arthropathy by applying safe and effective techniques. However, it is necessary to create protocols for possible treatments to avoid the risk of bleeding in these patients. This article describes the musculoskeletal pathology of hemophilic arthropathy and characteristics of fascial therapy. This systematic protocol for treatment by fascial therapy of knee and ankle arthropathy in patients with hemophilia provides an analysis of the techniques that, depending on their purpose and methodology, can be used in these patients. Similarly, the protocol's applicability is analyzed and the steps to be followed in future research studies are described. Fascial therapy is a promising physiotherapy technique for treating fascial tissue and joint contractures in patients with hemophilic arthropathy. More research is needed to assess the efficacy and safety of this intervention in patients with hemophilia, particularly with randomized multicenter clinical trials

La salud mental en los ancianos de la Región Autónoma de Madeira. Estudio piloto

La salud mental ha sido evaluada de acuerdo con la estructura propuesta por Ware & Veit (1), que incluye una dimensión positiva (el bienestar psicológico) y otra negativa (el distress psicológico). Este estudio piloto tiene como objetivo elaborar un protocolo para tipificar lasituación de la salud mental en la población anciana de la región. De los 63 ancianos seleccionados, a los que se les realizó el Mini Mental Health Examination, 47 integran la muestra. Todos tenían 65 años o más y residen en la comunidad. La casi totalidad era independiente en sus actividades básicas cotidianas. La puntuación media obtenida por los ancianos en el Inventario de Salud Mental fue superior a la obtenida por Ribeiro (2) en una muestra de jóvenes portugueses. El protocolo de investigación ha sido el adecuado. Los resultados nos han proporcionado una primera imagen de la salud mental en los ancianos de la RAM.

Inequidad y posición socioeconómica en la reproducción de la actividad física en entornos educativos. Análisis conceptual.

Objetivo: analizar cómo influye la inequidad y la posición socio económica como factores determinantes de la conceptualización de la actividad física, desde la concepción de los determinantes sociales, de forma tal que su revisión conceptual, ayude a constituir la re configuración del concepto de actividad física. Métodos: Exploración de la literatura científica desde la revisión conceptual de artículos seleccionados, utilizando las categorías inequidad y posición socioeconómica para establecer la influencia del concepto de la actividad física en entornos educativos. Y a partir de ella interpretar la re configuración del concepto de la actividad física, desde diferentes concepciones asociadas a los determinantes sociales. Resultados: Se hallaron concepciones de los diferentes autores respecto al concepto de la actividad física. (Peso, raza, índice de masa corporal, edad). Se interpretaron distintos niveles de influencia desde la inequidad y la posición socio económica asociados a la ocupación, el género, sitio de vivienda, nivel de estudio, y la estructura física del entorno. Posteriormente se reportaron resultados desde un análisis explicativo en el cual se interpretan las concepciones de los autores en cuanto al concepto de la actividad física, y como desde ella se establecen relaciones entre la inequidad, la posición socioeconómica y los entornos educativos que incluyen diferentes aspectos sociales para finalmente poder establecer un concepto claro de la re configuración social del concepto de la actividad física, concluyendo que este nuevo concepto social de la actividad física no posee una definición exacta, el análisis de los aspectos sociales de ésta, involucra innumerables concepciones que la influencian y la determinan, en consecuencia el concepto de la actividad física debe ser un concepto en constante evolución y reconfiguración debido a la naturaleza cambiante del ser humano, de las dinámicas sociales y las asociaciones de la salud con los aspectos sociales que se presentan en el diario vivir. Así mismo se evidencia que el concepto de la actividad física se fundamenta en estudios que dejan de lado los aspectos sociales que influencia el concepto y en consecuencia la práctica de la actividad física, esta investigación establece un punto de partida frente a la re configuración social del concepto de la actividad física. Conclusiones: Diferentes organizaciones en el mundo reconocen a la actividad física como una herramienta que favorece la socialización de las personas. Es así como la actividad física, desde el deporte en el campo competitivo y la educación física desde el campo educativo exploran la interacción social de los individuos, esto permite la construcción de valores y fortalece la sana convivencia dentro de las comunidades. Esta trasformación desde el concepto de la actividad física biomédica hasta la actividad física social se evidencia en los documentos revisados, en los cuales la actividad física es estudiada desde las categorías de inequidad y posición socio económica, De ahí que en su conceptualización se involucren diferentes conceptos asociados a los determinantes sociales de la salud, que en definitiva establecen un nuevo concepto de la re configuración social de la actividad física trascendiendo desde la actividad física biomédica o fisiológica hasta un concepto complejo que incluye intereses y particularidades de las personas como lo son la ocupación, la educación, el entorno, el medio ambiente y la estructura física.

Efeitos de um programa de exercício multimodal em pessoas idosas institucionalizadas

Objetivo: Investigar os efeitos de um programa de exercício multimodal sobre o funcionamento cognitivo e aptidão física funcional em pessoas idosas institucionalizadas. Método: Os participantes foram selecionados por conveniência entre os utentes de duas instituições de apoio a pessoas idosas. O grupo inicial foi constituído por um total de 21 pessoas de ambos os sexos (77-92 anos). Inicialmente, foi garantido um “período de controlo” de 4 semanas, em que os participantes mantiveram as suas atividades de vida quotidianas normais. Posteriormente, todos os idosos integraram um programa de exercício multimodal durante 8 semanas. Para estudar os efeitos da intervenção foram recolhidos dados em 3 momentos distintos: previamente ao período de controlo, após o período de controlo e no final do programa de intervenção. Foram efetuados testes físicos/motores, cognitivos e de dupla-tarefa (motor-cognitivo). Durante as sessões de exercício, alternaram-se períodos constituídos por tarefas motoras com períodos em que as tarefas motoras implicavam uma mobilização simultânea de recursos cognitivos. Resultados: A análise estatística dos dados recolhidos nos três momentos de avaliação, revelou efeitos positivos da intervenção ao nível da atenção, tempo de reação, força muscular, agilidade e capacidade cardiorrespiratória. Nos testes realizados em dupla-tarefa, foram encontradas melhorias no teste timed up and go, mas não se verificaram melhorias no teste de tempo de reação. A análise estatística dos dados recolhidos nos três momentos de avaliação, revelou efeitos positivos (p<0.05). da intervenção ao nível da atenção, tempo de reação, força muscular, agilidade e capacidade cardiorrespiratória. Nos testes realizados em dupla-tarefa, foram encontradas melhorias no teste timed up and go (p<0.05), mas não se verificaram melhorias no teste de tempo de reação. Conclusões: Um programa de exercícios multimodal induz melhorias no funcionamento cognitivo e motor de pessoas idosas institucionalizadas. É aconselhada a divulgação deste tipo de intervenção para pessoas idosas institucionalizadas; Effects of a Multimodal Exercise Program for Elderly Institutionalized Abstract: Objective: To investigate wthe effects of a multimodal exercise program on cognitive functioning and physical fitness of institutionalized elderly. Method: Participants were selected by convenience among two nursing home residents. Twenty-one people (77-92 years old) of both genders participated. During the first 4 weeks (control period), participants were not engaged in the exercise program and continue with their normal daily life activities. After the control period, the group was engaged in a multimodal exercise program for 8 weeks (2 times per week). To study the effects of a multimodal exercise program, data were collected at three different times: prior to the control period, after the control period, and at the end of the intervention. Several motor tests (physical fitness), cognitive tests and dual-tasks (motor-cognitive) were performed. The exercise sessions alternated between periods of motor taks and periods with motor plus cognitive tasks performed simultaneously. Results: The analysis of the data collected in the three moments of evaluation, show positive effects of the exercise program in cognitive dimensions (information processing speed and attention) and functional physical fitness components (muscle resistance, cardiorespiratory fitness and dynamic balance). In tests carried out in dual-task conditions, the exercise program promoted improvements in the timed up and go test (with mental calculations). Statistical analysis of the data collected at the three evaluation moments revealed positive effects (p <0.05). Of attention intervention, reaction time, muscle strength, agility and cardiorespiratory capacity. In the double-task tests, improvements were found in the timed up and go test (p <0.05), but there were no improvements in the reaction time test. Conclusions: The results of this study indicate that a multimodal exercise program can improve cognitive functioning and physical fitness in institutionalized older people. Thus, this type of intervention should be promoted among nursing home residents.

Robotics and neurodevelopmental disorder: design and implementation of a system of engagement metrics in human-robot interactions.

In the recent decades, robotics has become firmly embedded in areas such as education, teaching, medicine, psychology and many others. We focus here on social robotics; social robots are designed to interact with people in a natural and interpersonal way, often to achieve positive results in different applications. To interact and cooperate with humans in their daily-life activities, robots should exhibit human-like intelligence. The rapid expansion of social robotics and the existence of various kinds of robots on the market have allowed research groups to carry out multiple experiments. The experiments carried out have led to the collections of various kinds of data, which can be used or processed for psychological studies, and studies in other fields. However, there are no tools available in which data can be stored, processed and shared with other research groups. This thesis proposes the design and implementation of visual tool for organizing dataflows in Human Robot Interaction (HRI).

Reliability of scores between stroke patients and significant others on the Reintegration to Normal Living (RNL) Index

Purpose: This study measured reliability between stroke patients' and significant others' scores on items on the Reintegration to Normal Living (RNL) Index and whether there were any scoring biases. Method The 11-item RNL Index was administered to 57 pairs of patients and significants six months after stroke rehabilitation. The index was scored using a 10-point visual analogue scale. Patient and significant other demographic information and data on patients' clinical, functional and cognitive status were collected. Reliability was measured using the intra-class correlation coefficient (ICC) and percent agreement. Results: Overall poor reliability was found for the RNL Index total score (ICC=.36, 95% CI. 07 to .59) and the daily functioning subscale (ICC=.24, 95% CI -.003 to .46) and moderate reliability was found for the perception of self subscale (ICC=.55, 95 % CI .28 to .73). There was a moderate bias for patients to rate themselves as achieving better reintegration than was indicated by significant others, although no demographic or clinical factors were associated with this bias. Exact match agreement was best for the subjective items and worse for items reflecting mobility around the community and participation in a work activity. Conclusions: Caution is needed when interpreting patient information reported by significant others on the RNL Index. The use of a shorter scale to rate the RNL Index requires investigation.

A new accelerometric method to assess the daily walking practice.

OBJECTIVE: To describe a method to obtain a profile of the duration and intensity (speed) of walking periods over 24 hours in women under free-living conditions. DESIGN: A new method based on accelerometry was designed for analyzing walking activity. In order to take into account inter-individual variability of acceleration, an individual calibration process was used. Different experiments were performed to highlight the variability of acceleration vs walking speed relationship, to analyze the speed prediction accuracy of the method, and to test the assessment of walking distance and duration over 24-h. SUBJECTS: Twenty-eight women were studied (mean+/-s.d.) age: 39.3+/-8.9 y; body mass: 79.7+/-11.1 kg; body height: 162.9+/-5.4 cm; and body mass index (BMI) 30.0+/-3.8 kg/m(2). RESULTS: Accelerometer output was significantly correlated with speed during treadmill walking (r=0.95, P<0.01), and short unconstrained walks (r=0.86, P<0.01), although with a large inter-individual variation of the regression parameters. By using individual calibration, it was possible to predict walking speed on a standard urban circuit (predicted vs measured r=0.93, P<0.01, s.e.e.=0.51 km/h). In the free-living experiment, women spent on average 79.9+/-36.0 (range: 31.7-168.2) min/day in displacement activities, from which discontinuous short walking activities represented about 2/3 and continuous ones 1/3. Total walking distance averaged 2.1+/-1.2 (range: 0.4-4.7) km/day. It was performed at an average speed of 5.0+/-0.5 (range: 4.1-6.0) km/h. CONCLUSION: An accelerometer measuring the anteroposterior acceleration of the body can estimate walking speed together with the pattern, intensity and duration of daily walking activity.

Daily energy expenditure in free-living conditions in obese and non-obese children: comparison of doubly labelled water (2H2(18)O) method and heart-rate monitoring.

OBJECTIVE: To compare the heart-rate monitoring with the doubly labelled water (2H2(18)O) method to estimate total daily energy expenditure in obese and non-obese children. DESIGN: Cross sectional study of obese and normal weight children. SUBJECTS: 13 prepubertal children: six obese (4M, 2F, 9.1 +/- 1.5 years, 47.3 +/- 9.7 kg) and seven non-obese (3M, 4F, 9.3 +/- 0.6 years, 31.8 +/- 3.2 kg). MEASUREMENTS: Total daily energy expenditure was assessed by means of the doubly labelled water method (TEEDLW) and of heart-rate monitoring (TEEHR). RESULTS: TEEHR was significantly (P < 0.05) higher than TEEDLW in obese children (9.47 +/- 0.84 MJ/d vs 8.99 +/- 0.63 MJ/d) whereas it was not different in non-obese children (8.43 +/- 2.02 MJ/d vs 8.42 +/- 2.30 MJ/d, P = NS). The difference of TEE assessed by HR monitoring in the obese group averaged 6.2 +/- 4.7%. At the individual level, the degree of agreement (difference between TEEHR and TEEDLW +/- 2s.d.) was low both in obese (-0.36, 1.32 MJ/d) and in non-obese children (-1.30, 1.34 MJ/d). At the group level, the agreement between the two methods was good in nonobese children (95% c.i. for the bias:-0.59, 0.63 MJ/d) but not in obese children (0.04, 0.92 MJ/d). Duration of sleep and energy expenditure during resting and physical activity were not significantly different in the two groups. Patterns of heart-rate (or derived energy expenditure) during the day-time were similar in obese and non-obese children. CONCLUSION: The HR monitoring technique provides an estimation of TEE close to that assessed by the DLW method in non-obese prepubertal children. In comparison with DLW, the HR monitoring method yields a greater TEE value in obese children.

Alteration and recovery of arm usage in daily activities after rotator cuff surgery.

BACKGROUND: The objective measurement of dominant/nondominant arm use proportion in daily life may provide relevant information on healthy and pathologic arm behavior. This prospective case-control study explored the potential of such measurements as indicators of upper limb functional recovery after rotator cuff surgery. METHODS: Data on dominant/nondominant arm usage were acquired with body-worn sensors for 7 hours. The postsurgical arm usage of 21 patients was collected at 3, 6, and 12 months after rotator cuff surgery in the sitting, walking, and standing postures and compared with a reference established with 41 healthy subjects. The results were calculated for the dominant and nondominant surgical side subgroups at all stages. The correlations with clinical scores were calculated. RESULTS: Healthy right-handed and left-handed dominant arm usage was 60.2% (±6.3%) and 53.4% (±6.6%), respectively. Differences in use of the dominant side were significant between the right- and left-handed subgroups for sitting (P = .014) and standing (P = .009) but not for walking (P = .328). The patient group showed a significant underuse of 10.7% (±8.9%) at 3 months after surgery (P < .001). The patients recovered normal arm usage within 12 months, regardless of surgical side. The arm underuse measurement was weakly related to function and pain scores. CONCLUSION: This study provided new information on arm recovery after rotator cuff surgery using an innovative measurement method. It highlighted that objective arm underuse measurement is a valuable indicator of upper limb postsurgical outcome that captures a complementary feature to clinical scores.