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1.
Am J Occup Ther ; 78(3)2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38640086

RESUMO

IMPORTANCE: Assuming the care of a family member with a disability or chronic illness constitutes a health risk factor for caregivers, who frequently overlook their own self-care. OBJECTIVE: To analyze the self-care activities (SCAs) among caregivers of a family member with a disability or chronic illness and assess the impact on their satisfaction and quality of life (QoL). DESIGN: Descriptive, cross-sectional, analytic study. SETTING: Community. PARTICIPANTS: Five hundred caregivers of family members with a disability or chronic illness in the city of Zaragoza, Spain. OUTCOMES AND MEASURES: The family caregivers' occupational performance and satisfaction were assessed with the Canadian Occupational Performance Measure, and their QoL was assessed with the World Health Organization-Quality of Life. RESULTS: In total, 32.8% of family caregivers had difficulty in all activities related to self-care, 46.6% had difficulty sleeping and resting, 31.6% had difficulty receiving health-related treatments, and 31.2% had difficulty with physical exercise. Women and younger family caregivers showed greater impairment in self-care. Occupational performance, satisfaction, and QoL worsened as the number of affected activities increased. CONCLUSIONS AND RELEVANCE: Caring for a family member with a disability or chronic illness has a negative impact on the SCAs of caregivers, especially among female caregivers and those of younger age. Caregiving is also associated with lower occupational performance, satisfaction, and QoL. Plain-Language Summary: Caring for a family member with a disability or chronic illness can become a health risk for caregivers, who frequently ignore their own self-care. The study results found that women and younger family caregivers showed a greater decline in self-care. This study provides information to help occupational therapists to work with family caregivers to prevent a decline in their self-care and improve their quality of life.


Assuntos
Cuidadores , Qualidade de Vida , Humanos , Feminino , Autocuidado , Estudos Transversais , Canadá , Família , Doença Crônica
2.
J Clin Med ; 12(13)2023 Jun 22.
Artigo em Inglês | MEDLINE | ID: mdl-37445257

RESUMO

Worldwide, about 10 percent of patients affected by long COVID require appropriate follow-up and intervention. The main objective of this study was to analyze the long-term impact of mild long COVID in the adult population, and to determine the effect of clinical and sociodemographic variables on health-related quality of life in those affected. Methods: A cross-sectional descriptive study of a sample of Spanish adult patients with persistent COVID-19 symptoms at least three months after diagnosis. Data collection took place between April and July 2021. The health-related quality of life of the sample was low, with worse results in the physical component summary (PCS) 24.66 (SD = 4.45) compared to the mental component summary (MCS) 45.95 (SD = 8.65). The multi-regression analysis showed significant differences by sex in the dimensions of physical functioning (p = 0.040); bodily pain (p = 0.036); and health transition (p = 0.018). Additionally, a longer time since infection had a significant effect on physical functioning (p = 0.039); general health (p = 0.037); vitality (p = 0.034); and general health transition (p = 0.002). The effect of occupational imbalance was significant for all dimensions. Conclusions: people with long COVID have a reduced quality of life. Sex, time since infection, and occupational imbalance are predictors of a worse quality of life.

3.
Children (Basel) ; 10(6)2023 May 29.
Artigo em Inglês | MEDLINE | ID: mdl-37371197

RESUMO

BACKGROUND: The Revised Knox Preschool Play Scale (RKPPS) is a comprehensive assessment test that observes the level of play development; however, there is no culturally adapted version available with stable psychometric values that would allow its widespread use and provide objective information during clinical evaluations. METHODS: Cross-cultural adaptation included direct and retrospective translations, along with cognitive interviews with pediatric occupational therapists to analyze the comprehensibility of the translation. In addition, a final phase of linguistic revision was carried out to determine the grammatical and semantic fit of the adapted version. Finally, inter-rater reliability was analyzed in a sample of typically developing children aged four to six years old. RESULTS: The processes of translation and back-translation, cognitive interview, and linguistic review determined an adequate grammatical and semantic equivalence to the Spanish cultural context. Almost perfect agreement, with values between 0.82 and 0.94, was obtained for items and play dimensions, indicating that the precision of the measurements between both evaluators was excellent. CONCLUSIONS: The cross-culturally adapted version of the RKPPS meets the necessary adjustments for the sociocultural context and can be used in the clinical practice of occupational therapy.

4.
Children (Basel) ; 10(6)2023 Jun 20.
Artigo em Inglês | MEDLINE | ID: mdl-37371317

RESUMO

BACKGROUND: Phelan-McDermid syndrome (PMS) is caused by the loss (deletion) of a small portion of chromosome 22 in a region designated q13.3 (22q13.3 deletion). PMS is one of the most common genetic forms of autism spectrum disorder (ASD) in which sensory reactivity difficulties have been described on limited occasions. METHODS: The objective of this study is to identify whether changes in sensory reactivity skills occur after one year of follow-up in a group of 44 participants diagnosed with PMS. All participants completed the Short Sensory Profile (SSP). Two-factor ANOVA tests were performed with repeated measures for the study of the evolution of the scores. RESULTS: Participants with PMS showed significant changes after one year of follow-up in sensory reactivity skills associated with tactile hyperreactivity (p = 0.003). The rest of the study variables did not show significant differences compared to the baseline assessment, showing definite differences associated with patterns of hypo-responsiveness and sensory seeking, low/weak energy, and difficulties in auditory filtering. CONCLUSIONS: Understanding the evolution of sensory reactivity skills can facilitate the adjustment to behavioral changes in people with PMS and design-targeted interventions to address sensory reactivity challenges.

5.
Healthcare (Basel) ; 11(12)2023 Jun 08.
Artigo em Inglês | MEDLINE | ID: mdl-37372806

RESUMO

INTRODUCTION: To explore the impact of the lockdown and social distancing measures, applied for one year, due to the COVID-19 pandemic on Activities of Daily Living in patients with Parkinson's disease, as well as to determine the association between daily performance and tasks requiring more manipulative dexterity. METHODS: Data collection was carried out between 18 January and 22 March 2021 through telephone interviews. Patients were recruited from associations of patients with Parkinson's disease in Spain. A questionnaire was designed including items from standardized tools of the Activities of Daily Living Questionnaire to measure the level of independence and from the Dexterity Questionnaire for manipulative dexterity. RESULTS: There were 126 participants aged 36-89 years, 58% of whom were male. The results of our study reveal a significant decline in almost all the ADLs assessed. There is a moderate correlation between the degree of dependence in ADLs and the difficulty in performing activities requiring manipulative dexterity. CONCLUSIONS: Social isolation related to the COVID-19 pandemic and its consequences may have contributed to an increase in the deterioration of manipulative ability, leading to a loss of ability to perform ADLs. These results show specific needs to be considered in the rehabilitation treatment of these patients.

6.
Biomedicines ; 11(3)2023 Mar 10.
Artigo em Inglês | MEDLINE | ID: mdl-36979832

RESUMO

New technologies have been developed to complement conventional interventions to better target the specific needs of people with stroke, and they have been shown to improve both function and performance. However, it is unknown whether the baseline levels of sensorimotor function and performance interrelate with the improvement in upper limb and daily performance. Thus, the aim of this study was to examine the relationship between baseline levels of sensorimotor function and daily performance and its impact on post-intervention improvement in people with stroke following a robotic intervention. A single-blind, non-randomized, controlled clinical trial was conducted. Participants in the experimental group (n = 9) received a robotic intervention in addition to conventional treatment. Sensorimotor function was measured with Semmes-Weinstein Monofilaments® and the Fugl-Meyer Assessment Upper Extremity Scale. Upper limb and daily performance were measured with the MAL and SIS-16 scales. The multivariate regression models showed that baseline levels of upper limb performance and motor function predicted >95% of the variance in upper limb performance (p < 0.001), while pre-intervention levels of daily performance explained >75% of the post-intervention variance (p < 0.05). These findings indicate that basal upper limb motor function is associated with improved performance following a combined intervention of conventional treatment and robotic intervention.

7.
Dev Med Child Neurol ; 65(7): e81-e90, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36516235

RESUMO

OBJETIVO: El Síndrome de Phelan-McDermid (SPMD) es una enfermedad rara, infradiagnosticada y sin cura. El propósito de este estudio fue explorar la experiencia de los progenitores con niños diagnosticados con el Síndrome de Phelan-McDermid, en relación con el proceso de diagnóstico, el tratamiento y la atención médica. MÉTODO: Se realizó un estudio cualitativo descriptivo. Los participantes fueron reclutados mediante un muestreo intencional no probabilístico. En total, se incluyeron 32 progenitores con hijos con SPMD. Se utilizaron entrevistas en profundidad y notas de campo de los investigadores. Se realizó un análisis temático inductivo. RESULTADOS: Se identificaron cinco temas: "El proceso diagnóstico", se describe el proceso diagnóstico y la forma de comunicarlo a los progenitores; "El tratamiento y sus expectativas" describe las expectativas y esperanzas construidas sobre un futuro tratamiento; "Planificación familiar", describe como los progenitores se enfrentan al consejo genético, para la planificación de tener más hijos tras el diagnóstico de SPMD; "El mundo de la discapacidad", describe la entrada de los progenitores en el entorno de la dependencia y discapacidad tras el diagnóstico; "La economía familiar", muestra las dificultades económicas debido al elevado coste de las terapias y los productos del cuidado diario. INTERPRETACIÓN: Nuestros resultados proporcionan una visión de cómo el diagnóstico y sus consecuencias son experimentados por los progenitores con niños con SPMD. Estos resultados pueden ser utilizados por los profesionales de la salud para ayudar y apoyar a los progenitores.


Assuntos
Complicações Pós-Operatórias , Humanos , Estudos Retrospectivos
8.
Dev Med Child Neurol ; 65(7): 908-916, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36463508

RESUMO

AIM: To explore the experience of parents of children diagnosed with Phelan-McDermid syndrome (PMS) with regard to the diagnostic process, treatment, and medical care. METHOD: A qualitative descriptive study was conducted. Participants were recruited using non-probabilistic purposeful sampling. In total, 32 parents with children with PMS were included. In-depth interviews and researcher field notes were used. An inductive thematic analysis was performed. RESULTS: Five themes were identified: (1) the 'diagnostic process' describes the diagnostic process and how it is communicated to the parents; (2) 'treatment and expectations' describes the expectations and hopes placed on future treatment; (3) 'family planning' describes how parents deal with genetic counselling when planning to have more children after a diagnosis of PMS; (4) 'the world of disability' describes the entry of parents into an environment of dependency and disability after the diagnosis; (5) 'family's financial situation' highlights the financial difficulties due to the high cost of therapies and daily care products. INTERPRETATION: Our results provide insight on how a diagnosis of PMS and its consequences are experienced by parents of children with PMS. These results can be used by health professionals to help and support parents.


Assuntos
Transtornos Cromossômicos , Criança , Humanos , Transtornos Cromossômicos/diagnóstico , Transtornos Cromossômicos/terapia , Transtornos Cromossômicos/genética , Deleção Cromossômica , Pais , Pesquisa Qualitativa
9.
J Clin Med ; 11(19)2022 Oct 06.
Artigo em Inglês | MEDLINE | ID: mdl-36233769

RESUMO

Background: Currently, about 15% of coronavirus disease-19 (COVID-19) patients are affected by Long COVID worldwide; however, this condition has not yet been sufficiently studied. The aim of this study was to identify the impact of symptom persistence as well as clinical and socio-demographic variables in a cohort of people with Long COVID. Methods: We conducted a descriptive cross-sectional study of a sample of adult patients from different Spanish regions presenting with Long COVID. Data collection was conducted between April and July 2021. Functional status and dependency were assessed. Results: A multivariate linear regression was performed, and the model was statistically significant (F (7; 114) = 8.79; p < 0.001), according to the overall ALDQ score. The variables with a statistically significant effect on the degree of dependence were age (p = 0.014), time since diagnosis (p = 0.02), headaches (p = 0.031), and dizziness (p = 0.039). Functional status post-COVID showed a positive and significant relationship with the percentage of dependence (p < 0.001). Conclusions: People affected by Long COVID showed moderate dependency status and limitations in functionality. Those with neurological symptoms, such as dizziness and headaches, as well as older age, showed a higher degree of dependency. Improvements in dependency status occurred with increasing time since diagnosis.

10.
Artigo em Inglês | MEDLINE | ID: mdl-36078244

RESUMO

(1) Background: Phelan-McDermid Syndrome (PMS) in children causes significant challenges affecting social and family relationships. The purpose of this study was to explore the experience of parents with children diagnosed with PMS regarding interactions with their social environment; (2) Methods: A qualitative descriptive study was conducted. Participants were recruited using non-probabilistic purposeful sampling. In total, 32 parents of children with PMS were included. In-depth interviews and researchers' field notes were used to collect the data. An inductive thematic analysis was performed; (3) Results: Five themes were identified: (a) challenges in the relationship as a couple; (b) challenges within the family and close social relationships; (c) challenges in the educational-school environment; (d) challenges in the health environment and with health professionals, and (e) reconnection through the PMS association. It would be beneficial for parents to create training programs on PMS in the educational and healthcare settings, to promote the participation of professionals in the PMS association and to develop care programs focusing in their physical, psychological and social health.


Assuntos
Transtornos Cromossômicos , Criança , Deleção Cromossômica , Transtornos Cromossômicos/genética , Cromossomos Humanos Par 22 , Família , Humanos , Pesquisa Qualitativa
11.
Front Neurosci ; 16: 893003, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35864987

RESUMO

Introduction: The variety in symptomatology and clinical presentation of individuals diagnosed with Phelan-McDermid Syndrome (PMS) can delay medical diagnosis, so identifying specific neurobehavioral variables and facilitating differential diagnosis with patients with idiopathic Autism Spectrum Disorder (ASD) can guide early detection. Methods: A descriptive analysis of the level of adaptive behavior in 50 patients diagnosed with PMS was performed (SHANK3 deletion: N = 44; SHANK mutation : N = 6). Subsequently, a comparative analysis was performed with 28 children aged between 4 years and 6 years and 11 months (SHANK3 deletion = 14; ASD = 14). Differences between the two groups were evaluated and Bonferroni correction was applied for multiple comparisons. Results: Differences were identified in the variables of communication (z = -2.715, p = 0.007), Self-Direction (z = -2.199, p = 0.028) and social participation (z = -3.190, p = 0.001), with better adaptive behavior skills being observed in participants with a SHANK3 mutation . Better adaptive skills in the sample of participants with ASD , were found and statistically significant differences were identified in the variables of academic skills (z = -3.084, p = 0.002), use of community resources (z = -1.889, p = 0.050) and health and safety (z = -2.90, p = 0.004). Conclusion: Participants with SHANK3 mutation show better communication and social participation skills than those with a diagnosis of SHANK3 deletion. The observed differences between ASD and individuals with PMS reflect deficits in practical and conceptual adaptive skills that may limit and hinder daily adaptive functioning.

12.
Eur J Pediatr ; 181(8): 3141-3152, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35840778

RESUMO

Phelan-McDermid syndrome (PMS) is a genetic disorder caused by a mutation or deletion of the SHANK3 gene (chromosome 22q13.3), characterized by different sensory processing anomalies. The objective of this study is to expand and provide a detailed definition of the sensory profile of patients with PMS. The secondary objective was to examine the relationship between sensory patterns and adaptive behavior. A cross-sectional study was carried out among 51 Spanish patients with a confirmed genetic diagnosis of PMS. All the participants' parents completed the Short Sensory Profile-Spanish (SSP-S) and the Adaptive Behavior Assessment System II (ABAS-II). Correlational, multiple regression and hierarchical cluster analyses were performed. An atypical sensory profile was identified in almost 75% of PMS patients. Definite differences were found among scores; nonetheless, sub-threshold values were observed in tactile sensitivity, underresponsive/seeks sensation, auditory filtering, and low energy/weak sensory categories. Conceptual, social, and practical domains, as well as the General Adaptive Composite (GAC) of the ABAS-II showed extremely low scores (i.e., <70). Significant correlations were found (p<0.005) between SSP-S scores and the conceptual, social, practical, and GAC index of the ABAS-II, whereby higher SSP-S scores were associated with better skills and higher adaptive performance. The cluster analysis indicated that the group with the largest mutation size (7.23 Mb) showed the greatest sensory processing difficulties and very low adaptive skills. CONCLUSIONS: Patients with PMS show an atypical sensory profile, which correlates with limitations in general adaptive behaviors. WHAT IS KNOWN: • PMS sensory processing difficulties were associated with a pattern of underresponsive/seeks sensation, low energy/weak, and tactile hyporeactivity. • Sensory processing difficulties have been associated with limitations in the development of appropriate adaptive communication and interaction behaviors. WHAT IS NEW: • Sensory definite differences associated with tactile hyperreactivity, as well as significant effects of underresponsiveness/seeks sensation and auditory filtering categories on the adaptive abilities were found in SHANK3deletion patients. • Cluster analysis suggests that smaller mutation sizes were related to better sensory processing and higher adaptive skills, while patients with larger deletion sizes have greater adaptive difficulties and worse sensory processing skills.


Assuntos
Transtornos Cromossômicos , Adaptação Psicológica , Deleção Cromossômica , Transtornos Cromossômicos/complicações , Transtornos Cromossômicos/diagnóstico , Transtornos Cromossômicos/genética , Cromossomos Humanos Par 22/genética , Estudos Transversais , Humanos , Percepção , Fenótipo , Sensação
13.
J Clin Med ; 11(13)2022 Jun 21.
Artigo em Inglês | MEDLINE | ID: mdl-35806854

RESUMO

BACKGROUND: Sensory-motor deficits are frequent and affect the functionality after stroke. The use of robotic systems to improve functionality and motor performance is advisable; therefore, the aim of the present study was to evaluate the effects of intensive, high-frequency vibration treatment administered with a robotic system in subacute and chronic stroke patients in terms of upper limb sensitivity, motor function, quantity and quality of movement, and quality of life. METHODS: A simple-blind, non-randomized controlled trial was conducted. The control group received conventional rehabilitation treatment and the experimental group received robotic treatment with an Amadeo® robot in addition to their conventional rehabilitation sessions. RESULTS: Intragroup analysis identified significant improvements in the experimental group in hand (p = 0.012), arm (p = 0.018), and shoulder (p = 0.027) sensitivity, as well as in motor function (FMA-UEmotor function, p = 0.028), integration of the affected limb (MAL-14amount scale, p = 0.011; MAL-14How well scale, p = 0.008), and perceived quality of life (SIS-16, p = 0.008). The measures between the control and experimental groups showed statistically significant differences in motor performance and spontaneous use of the affected limb (MAL-14amount scale, p = 0.021; MAL-14How well scale, p = 0.037). CONCLUSIONS: Intensive, high-frequency vibration with a robotic system, in combination with conventional intervention, improves the recovery of upper limb function in terms of quantity and quality of movement in patients with subacute and chronic stroke.

14.
Artigo em Inglês | MEDLINE | ID: mdl-35682080

RESUMO

The COVID-19 pandemic caused a lot of social and health chaos. Our main aim in this study was to examine the impact of the COVID-19 pandemic on occupational balance in the Spanish population, one year post the beginning of the pandemic compared with the pre-pandemic period. Data were collected among the Spanish population over 18 years of age by the Occupational Balance Questionnaire online survey; questions about satisfaction and performance of activities, and on the modification of routine and habits were asked. A total of 300 participants were included; 55.3% were female, with a mean age of 41.39 years. Significantly greater occupational imbalance was found in 1-year-post-confinement period of pandemic, as well as an increase in the difficulty of performance and a decrease in satisfaction with it. A greater number of the sample had modified their routines (p < 0.01), lost habits (p < 0.01), and did not resume habits (p < 0.01). In the analysis by age groups, differences were found in the variables related to habits and occupational balance. The social restriction measures negatively impacted occupational balance in the Spanish population. There was a decrease in occupational participation, increased difficulty in performance, decreased satisfaction in occupational performance, and modification of habits and routines.


Assuntos
COVID-19 , Pandemias , Adolescente , Adulto , COVID-19/epidemiologia , Feminino , Humanos , Masculino , Satisfação Pessoal , SARS-CoV-2 , Isolamento Social
15.
BMJ Open ; 12(4): e058821, 2022 04 26.
Artigo em Inglês | MEDLINE | ID: mdl-35473733

RESUMO

INTRODUCTION: Empathy is an important interpersonal skill and a fundamental component in the professional-patient relationship, being the basis for implementing person-centred practice. In several studies, a decrease in empathy levels throughout training in medicine, nursing or dentistry, among others, has been shown. There are few studies on the occupational therapy branch of healthcare. The aim was to determine the degree of empathy perceived by students of occupational therapy at a Spanish university, as well as to analyse the differences between empathy levels according to the different degree courses and gender. METHODS: A descriptive cross-sectional study was designed with a sample of 221 occupational therapy students from a Spanish university. The Davis Interpersonal Reactivity Index (IRI) and the Jefferson Scale of Empathy-Health Profession Student's Spanish version (JSPE-HPS-S) were used as outcome measures. RESULTS: According to the results found, high level of empathy was found on all dimension of the IRI (69.84 (9.80)) and the JSPE-HPS-S (122 (94-140)). Although high levels of empathy among occupational therapy students are observed in all degree courses, no significant differences were found between them. Statistically significant differences and a moderate effect size (r) were found between the variables according to the gender of the participants, with females showing greater empathy in the overall scores of the IRI as well as in the JSPE-HPS-S (p=0.002, r=0.212; p=0.001, r=0.327, respectively). CONCLUSIONS: Empathy is an essential competence for the development of quality occupational therapy practice. According to the results and although occupational therapy students showed high levels of empathy, it is important to pay attention to the evolution of empathy and to provide students with learning experiences that prevent its possible decline.


Assuntos
Terapia Ocupacional , Estudantes de Medicina , Estudos Transversais , Empatia , Feminino , Humanos , Universidades
16.
Brain Inj ; 36(6): 775-781, 2022 05 12.
Artigo em Inglês | MEDLINE | ID: mdl-35446745

RESUMO

BACKGROUND: The evaluation of functional cognition is a central concern in clinical practice. However, there are few standardized or validated tools, and many of them take too long, requiring screening tests. AIMS: To explore the convergent validity of the ACLS-5 with other cognitive screening test and functional independence test in a sample of people with acquired brain injury. Moreover, to examine the prediction of ACLS-5 on functioning and cognitive performance outcomes. MATERIALS AND METHODS: A cross-sectional design was applied following the guidelines of the STROBE checklist. A consecutive sample of people with acquired brain injury was recruited from rehabilitation centers. A cognitive screening test and daily living activity tests were implemented, such as ACLS-5, MoCA, Barthel, and FIM+FAM. Data were analyzed using non-parametric methods. In addition, a structural analysis and simple regression models were performed. RESULTS: Eighty patients with chronic acquired brain injury, with a mean age of 52, were recruited. All tests are significantly related to the ACLS-5 score, a moderate effect size for MoCA (ρ = 0.36), and a strong effect size for the other two (ρ > 0.50). CONCLUSIONS: ACLS-5 predicts functional and cognitive performance quickly and effectively, optimizing assessment time and avoiding mental fatigue or physical exhaustion.


Assuntos
Lesões Encefálicas , Avaliação da Deficiência , Atividades Cotidianas/psicologia , Lesões Encefálicas/diagnóstico , Lesões Encefálicas/reabilitação , Cognição , Estudos Transversais , Humanos , Pessoa de Meia-Idade
17.
Am J Occup Ther ; 76(2)2022 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-35175336

RESUMO

IMPORTANCE: Multiple sclerosis (MS) is a demyelinating disease of the central nervous system that produces both motor and cognitive dysfunctions. Impairments in limb function as a result of MS cause a decline in the performance of activities of daily living (ADLs). OBJECTIVE: To determine whether the use of mental practice (MP) or MP combined with training in motor manipulation skills (skills training) would improve gross and fine motor skills and treatment satisfaction among people with MS. DESIGN: Pilot study with a duration of 3 mo plus 3-mo follow-up. SETTING: Two MS associations. PARTICIPANTS: Thirty-five patients diagnosed with MS of the relapsing-remitting and progressive secondary subtypes, ages 25 to 60 yr. INTERVENTION: The participants were allocated to one of three groups according to their order of inclusion in the study: (1) MP, (2) MP + skills training, or (3) control group. The treatment protocol had a 6-wk duration and a total of 12 sessions. Outcomes and Measures: Blinded evaluators performed three assessments for each patient (pretreatment, posttreatment, and 3-mo follow-up) using the Nine-Hole Peg Test, Box and Block Test, ABILHAND, and Canadian Occupational Performance Measure (COPM). RESULTS: We found no evidence of benefits in self-perceived performance of ADLs with respect to gross and fine motor skills; however, there was an improvement in perceived satisfaction and in the performance of activities, independent of the treatment received. CONCLUSIONS AND RELEVANCE: Perceived ADL performance and satisfaction with performance increases among people with MS when they receive MP, MP + skills training, and conventional rehabilitation treatment. What This Article Adds: Mental practice combined with conventional treatment could contribute to patients perceiving improved performance of ADLs. Self-reported outcome measures, such as the COPM, could provide highly valuable information about occupation performance that may not match the objective evidence.


Assuntos
Atividades Cotidianas , Esclerose Múltipla , Adulto , Canadá , Humanos , Pessoa de Meia-Idade , Destreza Motora/fisiologia , Esclerose Múltipla/complicações , Projetos Piloto
18.
Children (Basel) ; 10(1)2022 Dec 30.
Artigo em Inglês | MEDLINE | ID: mdl-36670624

RESUMO

(1) Background: Parents of children with rare diseases experience great uncertainty and employ different strategies to care for their children and cope with the disease. The purpose of the present study was to describe the perspective of parents with children with Phelan McDermid Syndrome (PMS). (2) Methods: A non-probabilistic purposeful sampling was used to perform this qualitative descriptive study. Thirty-two parents with children with PMS were interviewed. In-depth interviews and research field notes were analyzed using an inductive thematic analysis. (3) Results: Four themes emerged from the data. "Understanding and accepting the disease" described how parents experienced their child's diagnosis and the lack of information. The second theme, called "Living day by day", highlighted the daily difficulties faced when caring for a child with PMS. The third theme, "Expectations versus reality", was based on the parents' expectations of parenthood and the reality they face. Expectations for the future are also included. Finally, "Pain and happiness" describes how parents alternate feelings of distress and suffering but also joy with what they learn from these experiences. (4) Conclusions: Health professionals can use these results to support parents.

19.
Occup Ther Int ; 2021: 9998480, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34908917

RESUMO

BACKGROUND: Worldwide, 47 million people suffer from dementia. Despite recognizing the importance of spirituality within dementia care, it is still unclear how this should be integrated into dementia services. AIM: To explore the perspective of health professionals regarding the spiritual care of people with advanced dementia. METHODS: A qualitative systematic review was performed following the Enhancing Transparency in Reporting the Synthesis of Qualitative Research guidelines for the study design. The inclusion criteria included original articles published from January 2008 to March 2019, using either qualitative or mixed methods. The quality of the articles included was evaluated using the consolidated criteria for reporting qualitative research, Standards for Reporting Qualitative Research, and the Critical Appraisal Skills Programme. Synthesis of findings was performed using thematic analysis. RESULTS: Twelve studies were included in the review. Seventeen categories were identified, grouped into four themes: (1) the perception of spirituality, including the failure to address the same, (2) the spiritual needs of people with advanced dementia, (3) spiritual needs from health care providers, and (4) addressing spirituality, with the following categories: music, significant activities, among others. CONCLUSIONS: Spirituality is not formally addressed in this population, and professionals do not feel confident enough to be able to integrate spirituality in their care. It is necessary to identify and record the spiritual needs of people with advanced dementia, as well as to design specific care programs.


Assuntos
Demência , Terapia Ocupacional , Terapias Espirituais , Demência/terapia , Humanos , Pesquisa Qualitativa , Espiritualidade
20.
Occup Ther Int ; 2021: 5583063, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34483781

RESUMO

BACKGROUND: Multiple sclerosis is a disorder which causes a loss of functionality, affecting the person's ability to perform activities of daily living, such as interpersonal interactions and relationship, dressing, self-care, or bathing, as well as having a negative impact on work and leisure activities. AIMS: This study examined the relationship (correlational or associations/predictive) between self-perceived quality of life and performance of manipulative dexterity. Also, this study sought to measure predictors of dexterity. Study Design. A cross-sectional study from two associations of MS within the Community of Madrid, Spain. Methods and Procedures. A final sample of 30 people with multiple sclerosis. The outcome measures used were the ABILHAND questionnaire, the Purdue Pegboard Test, the Nine Hole Peg Test, and the Box and Block Test. RESULTS: No significant correlations were found between dexterity and self-perception tests; however, correlations were found between perceived dexterity and quality of life (p < 0.001). Scores for the ABILHAND questionnaire, which measures the perception of skills in daily living, predicted up to 60% of the variance in the dexterity tests. CONCLUSIONS: The results of this study suggest that interventions for improving the manipulative dexterity of people with multiple sclerosis should address the person's perception of improving their manipulative dexterity and the perceived of quality of life, as both factors may influence manipulative dexterity.


Assuntos
Esclerose Múltipla , Terapia Ocupacional , Atividades Cotidianas , Adulto , Estudos Transversais , Humanos , Destreza Motora , Qualidade de Vida , Autoimagem
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