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PURPOSE: To present a synthesis of evidence related to the factors influencing communication partners' use of augmentative and alternative communication with persons with severe/profound intellectual disability. MATERIALS AND METHODS: An integrative review guided by five steps; problem identification, literature search, data evaluation, data analysis and presentation was undertaken. In accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement, nine databases were searched, 1,342 studies were screened against the eligibility criteria, and 15 studies underwent thematic analysis. RESULTS: Two themes emerged; (1) Achieving Meaningful Communication and (2) Communication Partners' Preparedness to Use Augmentative and Alternative Communication. Achieving meaningful communication was central to communication partners' use of augmentative and alternative communication and was two-fold. It involved identifying the persons' communication methods and encouraging them to communicate. Communication partners' preparedness also influenced their use of augmentative and alternative communication. This preparedness was impacted by communication partners' preconceived thoughts about and knowledge of augmentative and alternative communication, nurturing their belief in augmentative and alternative communication, and the interpersonal dynamic between network members. CONCLUSION: Communication partners' use of augmentative and alternative communication is influenced by multiple and complex factors. The findings contribute to the knowledge of the potential factors to be considered to prepare communication partners to use augmentative and alternative communication.
Multiple, complex factors influence communication partners of persons with severe/profound intellectual disability use of augmentative and alternative communication (AAC), which include communication partners' beliefs, attitudes, expectations, knowledge and resources such as training, support and time.To offer individuals with severe/profound intellectual disability opportunities to communicate, communication partners need to recognise their attempts and thus, their ability. Continuously being sensitive to the individuals' communication methods, whilst being cognisant that these methods can change may enhance communication partners' awareness and understanding of the individuals' communication attempts.Communication partners' need to feel prepared to use AAC. To feel prepared, they need to be aware of the potential benefits that AAC can offer the interaction and the long-term outcomes, develop their knowledge, and be surrounded by a supportive team dynamic.
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PURPOSE: Based on a 2022 Speech Pathology Australia National Conference keynote address, the author explores the concept of autonomy and how it can be reconceptualised for people with profound intellectual and multiple disability through supported decision-making. METHOD: A collection of participatory action research studies with people with profound intellectual and multiple disability and their supporters are presented. Qualitative action research methodologies, including participatory observation, co-design workshops, and interviews, were used to explore supported decision-making for people with profound intellectual and multiple disability. RESULT: The insights have been used to co-design (with supporters) a definition and practice framework to enhance the autonomy of people with profound intellectual and multiple disability. CONCLUSION: Drawing on the construct of relational autonomy, readers are asked to reflect on their role as speech-language pathologists in enhancing autonomy of those they service, particularly people with profound intellectual and multiple disabilities. A definition of supported decision-making for people with profound intellectual and multiple disability along with a practice framework are offered. This body of work adds to a growing evidence base in supported decision-making, providing much needed practice guidance specifically relating to people with profound intellectual and multiple disability.
Subject(s)
Communication Disorders , Disabled Persons , Intellectual Disability , Speech-Language Pathology , Humans , Decision MakingABSTRACT
INTRODUCTION/BACKGROUND: This study aims to determine the impact of a person with profound intellectual and multiple disabilities on peer relationships of their siblings. METHODS: Information obtained from typically developing siblings of individuals with profound intellectual and multiple disabilities served as research material for this study. There were a total of 18 participants in the study. The analysis and interpretation were based on the procedures of grounded theory. RESULTS AND CONCLUSION: The results of the study show that young adults with a brother or sister with profound intellectual and multiple disabilities have some difficulties in establishing relationships with their peers, especially those more intimate such as friendships or romantic endeavors. At the same time, research confirms that siblings of individuals with profound intellectual and multiple disabilities have high levels of empathy and understanding for others as well as sincere attachment to family.
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This report describes a case of an amputee with a lumber spinal cord injury who successfully recovered ambulation with the use of prosthesis.A 30-year-old man with schizophrenia underwent amputation of the lower legs and concurrently developed lumbar spinal cord injury from of a suicide attempt. After the treatment of stump plasty and posterior fusion, the patient was transferred to our facility. Lower-extremity prostheses for both legs were fitted, and orthostatic training was commenced following admission. During the initial evaluation, the patient could not maintain a stable standing position because of weakness in the hip extensor muscle. An inflexion angle of the prosthesis was set to 0° to extend the knee joint and achieve standing stability. Appropriate adjustments of the prosthesis were made as required, specifically addressing the paraplegia caused by his lumbar spinal cord injury. Thus, the patient successfully regained ambulation with the treatment.Recovering walking independence after bilateral lower leg amputations or paraplegia caused by lumber spinal cord injury is not uncommon. However, this case is unique in that the muscle weakness caused by lumbar spinal cord injury presented unforeseen difficulties for the patient to achieve ambulation, which is not ordinarily observed in amputation rehabilitation cases. No similar cases have been reported in which patients concurrently suffered from both these conditions in Japan；therefore, this case is extremely rare.
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This report describes a case of an amputee with a lumber spinal cord injury who successfully recovered ambulation with the use of prosthesis.A 30-year-old man with schizophrenia underwent amputation of the lower legs and concurrently developed lumbar spinal cord injury from of a suicide attempt. After the treatment of stump plasty and posterior fusion, the patient was transferred to our facility. Lower-extremity prostheses for both legs were fitted, and orthostatic training was commenced following admission. During the initial evaluation, the patient could not maintain a stable standing position because of weakness in the hip extensor muscle. An inflexion angle of the prosthesis was set to 0° to extend the knee joint and achieve standing stability. Appropriate adjustments of the prosthesis were made as required, specifically addressing the paraplegia caused by his lumbar spinal cord injury. Thus, the patient successfully regained ambulation with the treatment.Recovering walking independence after bilateral lower leg amputations or paraplegia caused by lumber spinal cord injury is not uncommon. However, this case is unique in that the muscle weakness caused by lumbar spinal cord injury presented unforeseen difficulties for the patient to achieve ambulation, which is not ordinarily observed in amputation rehabilitation cases. No similar cases have been reported in which patients concurrently suffered from both these conditions in Japan；therefore, this case is extremely rare.
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PURPOSE: Augmentative and alternative communication (AAC) is recommended to be included in communication interventions directed at children/youth with severe/profound intellectual and multiple disabilities (S/PIMD). Even so, the evidence base for AAC practices with children with S/PIMD is limited. Also, little is known about how frequently AAC is implemented with this target group, which AAC tools and methods are applied, and the related clinical reasoning of speech-language pathologists (SLPs). This study aimed to explore SLPs' beliefs, clinical reasoning and practices in relation to AAC implementation with children/youth with S/PIMD. MATERIALS AND METHODS: In this sequential, mixed-methods study, 90 SLPs working with children with disabilities within habilitation services in Sweden participated in an online survey. The survey answers were statistically analysed. Subsequently, focus group data were collected from seven SLPs and analysed using thematic analysis. RESULTS AND CONCLUSIONS: Despite AAC being highly prioritized, SLPs found it challenging and complex to implement with this target group. A wide variety of AAC methods and tools were considered and implemented. Clinical decision-making was a balancing act between competing considerations and was mainly guided by the SLPs' individual, clinical experiences. The resources, engagement and wishes of the social network surrounding the child were considered crucial for clinical decision-making on AAC. Implications for research and practice are discussed.Implications for rehabilitationSpeech-language pathologists (SLPs) seemingly find a wide variety of Augmentative and Alternative Communication (AAC), ranging from unaided methods to assistive technology of various complexity, to be potentially suitable for children/youth with severe/profound intellectual and multiple disabilities (S/PIMD).The motivation and preferences of the social network surrounding the child with S/PIMD seem to influence SLPs' clinical decision-making on AAC to a high degree. Sometimes this may be considered an even more important factor than the abilities of the child.SLPs' clinical decision-making on AAC for children/youth is guided by their individual, clinical experience to a high degree.An increase in family oriented AAC intervention research targeting individuals with S/PIMD could potentially strengthen the association between research and the current, experience-based clinical practice.
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We provided inpatient rehabilitation treatment and return-to-school guidance to a junior high school student with medulloblastoma and pervasive developmental disorder (autism spectrum disorder). Here we describe the rehabilitation treatment for patients with physical and developmental disabilities. A 13-year-old boy who was diagnosed with pervasive developmental disorder at 4 years of age was able to perform activities of daily living independently and attend junior high school. However, he was admitted to our hospital with new-onset ataxia. Magnetic resonance imaging revealed a cerebellar tumor. After total tumor excision was performed, pathological analysis revealed medulloblastoma, which was treated initially with radiation therapy and then chemotherapy for 1 year. Rehabilitation was initiated 2 days post-surgery. We evaluated his communication abilities. He showed stereotypical behavior owing to the autism spectrum disorder；therefore, we performed low-intensity repetitive exercises. The functional independence measure score at discharge was 67/126 (motor 44/91, cognitive 23/35). We taught his teachers how to properly assist him, and he successfully returned to school post-discharge. Although this was a case in which the child had multiple disabilities, ataxia caused by the medulloblastoma aggravated his developmental disability. Thus, understanding the characteristics of communication and its strengths was vital in determining a treatment plan that enabled his return to school.
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We provided inpatient rehabilitation treatment and return-to-school guidance to a junior high school student with medulloblastoma and pervasive developmental disorder (autism spectrum disorder). Here we describe the rehabilitation treatment for patients with physical and developmental disabilities. A 13-year-old boy who was diagnosed with pervasive developmental disorder at 4 years of age was able to perform activities of daily living independently and attend junior high school. However, he was admitted to our hospital with new-onset ataxia. Magnetic resonance imaging revealed a cerebellar tumor. After total tumor excision was performed, pathological analysis revealed medulloblastoma, which was treated initially with radiation therapy and then chemotherapy for 1 year. Rehabilitation was initiated 2 days post-surgery. We evaluated his communication abilities. He showed stereotypical behavior owing to the autism spectrum disorder；therefore, we performed low-intensity repetitive exercises. The functional independence measure score at discharge was 67/126 (motor 44/91, cognitive 23/35). We taught his teachers how to properly assist him, and he successfully returned to school post-discharge. Although this was a case in which the child had multiple disabilities, ataxia caused by the medulloblastoma aggravated his developmental disability. Thus, understanding the characteristics of communication and its strengths was vital in determining a treatment plan that enabled his return to school.
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RESUMO: Crianças com deficiência múltipla sensorial visual enfrentam desafios diários para comunicar seus interesses e necessidades e para compreender adequadamente conceitos. Um dos grandes obstáculos para iniciar uma intervenção eficaz com essas crianças consiste em identificar suas preferências e fornecer estratégias de ensino e oportunidades de aprendizagem específicas que valorizem os seus pontos fortes. Nesse sentido, o objetivo deste estudo foi apresentar cinco cartões de símbolos tangíveis como recurso para ensinar conceitos sobre a pandemia da COVID-19 para crianças que apresentam deficiência múltipla sensorial visual. Pensando nisso, este ensaio teórico coloca em evidência a importância dos símbolos tangíveis como valiosos recursos da comunicação alternativa tátil, capazes de favorecer a comunicação, a antecipação de atividades, a compreensão de conceitos, e como opções de escolhas a serem feitas por estas crianças. Destaca-se a importância das interações táteis exploratórias por meio da modalidade háptica e do distanciamento entre o eu, os outros, os objetos e as representações. Por tratar-se de um assunto pouco explorado no cenário nacional, considera-se relevante apresentá-lo para que outros professores e pesquisadores o conheçam e o utilizem com seus alunos.
ABSTRACT: Children with multi-sensory impairment face daily challenges to communicate their interests and needs and properly understand concepts. One of the major obstacles to start an effective intervention with these children is to identify their preferences and provide specific teaching strategies and learning opportunities that value their strengths. In this sense, the objective of this study was to present five cards of tangible symbols as a resource to teach concepts about the COVID-19 pandemic to children who have multi-sensory impairment. With this in mind, this theoretical essay highlights the importance of tangible symbols as valuable resources for alternative tactile communication, capable of favoring communication, anticipating activities, understanding concepts, and as options for choices to be made by these children. It highlights the importance of exploratory tactile interactions through haptic modality and distance between the self, others, objects and representations. As it is a subject little explored in the national scenario, it is considered relevant to present it so that other professors and researchers can get to know it and use it with their students.
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Resumen El objetivo fue evaluar la calidad de vida de personas con discapacidad intelectual y múltiple de 4 a 21 años a través de la Escala KidsLife validada para Colombia. Se adelantó un estudio de corte cuantitativo-explicativo, en el que participaron 220 informantes clave. Las dimensiones donde se evidenciaron puntuaciones medias más altas en calidad de vida fueron bienestar físico y bienestar emocional; contrariamente, las puntuaciones más bajas se registraron en autodeterminación e inclusión social. Se encontraron diferencias significativas de acuerdo con nivel de discapacidad, nivel de necesidades de apoyo y nivel de dependencia reconocida. Las mayores diferencias significativas correspondieron a las variables: sexo, contar con la familia y tener acceso a la escolaridad; sin embargo, las variables explicativas de la calidad de vida fueron: nivel de necesidades de apoyo, contar con el apoyo de una familia, residir en el hogar familiar y escolarización ordinaria. Se concluyó que los menores puntajes en autodeterminación e inclusión social indican la necesidad de promover la participación en actividades comunitarias de interés que sean incluyentes. De igual forma, las relaciones encontradas entre los factores sociodemográficos y la calidad de vida evidencian la necesidad de implementar intervenciones orientadas a la creación de planes de apoyo individualizados, con el fin de promover su autodeterminación y estimular los logros personales y organizacionales.
Abstract The objective of this study was to evaluate the quality of life of the persons with intellectual and multiple disabilities between 4 to 21 years through the KidsLife Scale validated for Colombia. A quantitative-explanatory study was carried out involving 220 key informants. The dimensions with higher average scores in quality of life were physical well-being and emotional well-being; conversely, the lowest scores recorded were related to self-determination and social inclusion. Significant differences were found according to: level of disability, level of support needs and level of recognized dependence. The greatest significant differences corresponded to variables such as sex, having a family and the access to schooling. However, the explanatory variables of quality of life were: level of support needs, having family support, family home residing and ordinary schooling. It was concluded that the lower scores in self-determination and social inclusion indicate the need to promote participation in community activities of interest that are inclusive. Likewise, the relationships found between sociodemographic factors and quality of life show the need to implement interventions aimed at the creation of individualized support plans in order to promote self-determination and stimulate personal and organizational achievements.
Subject(s)
Quality of Life , Developmental Disabilities , Persons with Mental Disabilities , Quality of Life , Family , Residence Characteristics , Adolescent , Personal Autonomy , Diagnosis , Social Inclusion , Health Services Needs and DemandABSTRACT
Teleconsultations facilitating access to care, offer undeniable added value to the digital care pathway of children with multiple disabilities. This innovation transforms and enhances practices and collaboration methods between healthcare, medico-social and private practice professionals. An interview with Monique Bredillot, general care coordinator for CESAP, the committee for studies, education and care for people with multiple disabilities.
Subject(s)
Child Health Services/organization & administration , Disabled Children , Health Services Accessibility , Remote Consultation , Child , HumansABSTRACT
BACKGROUND: This study aimed to determine the relationship between motor abilities and quality of life in children with severe multiple disabilities. METHODS: In this cross-sectional study, motor abilities of 29 children (mean age 9.8 years; 45% girls) with severe multiple disabilities [IQ < 25; Gross Motor Function Motor Classification System level V] were measured with the MOtor eVAluation in Kids with Intellectual and Complex disabilities (Movakic) questionnaire (completed by the child's physical therapist). Quality of life was measured with the Quality of Life-Profound Multiple Disabilities (QoL-PMD) questionnaire (completed by the child's parents). RESULTS: A significantly moderate to high correlation was found between the total scores on the Movakic and the QoL-PMD (r = 0.40, P = 0.03), indicating that higher scores in motor abilities are associated with a higher level of quality of life. Furthermore, significantly moderate to high correlations were found between the total score on the Movakic and the dimension Physical Well-Being, Development and Activities of the Qol-PMD. In multiple linear regression models, all significant bivariate relationships between the Movakic total scores and QoL-PMD dimensions remained significant after controlling for the Gross Motor Function Motor Classification System level. CONCLUSIONS: In these children with severe multiple disabilities, motor abilities (as measured by Movakic) are moderately related to quality of life (as measured by the QoL-PMD).
Subject(s)
Disabled Children , Intellectual Disability/physiopathology , Motor Activity/physiology , Motor Skills/physiology , Quality of Life , Adolescent , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Infant , MaleABSTRACT
INTRODUCTION: The everyday life of a non-ambulatory adolescent or young adult with cerebral palsy can be severely impaired by a painful or stiff hip. The usual surgical solutions such as proximal femoral resection (PFR) are not entirely satisfactory for pain relief, and are mutilating. HYPOTHESIS: A retrospective study assessed the impact of total hip replacement (THR) on such impairment, on the hypothesis that it is more effective than PFR in relieving pain, without aggravating disability. PATIENTS AND METHODS: The surgical technique consisted in implanting a dual-mobility prosthesis with uncemented acetabular component and cemented femur, after upper femoral shaft shortening and short hip-spica cast immobilization. Forty THRs were performed in 33 patients, including 31 with multiple disability. Follow-up assessment focused on change in functional status, pain, and range of motion. RESULTS: Mean follow-up was 5 years. Pain was more or less entirely resolved. Improvement in range of motion was less striking, and there was no significant change in functional status. There were 2 general, 2 septic and 10 mechanical complications, 6 of which required surgical revision. DISCUSSION: In non-ambulatory cerebral palsy, THR provided much better alleviation of pain than found with PFR treatment. It should be reserved for patients able to withstand fairly long surgery and with femur size compatible with implantation of a femoral component, however small. LEVEL OF EVIDENCE: IV, retrospective study.
Subject(s)
Arthroplasty, Replacement, Hip/methods , Cerebral Palsy/complications , Osteoarthritis, Hip/surgery , Adolescent , Adult , Cerebral Palsy/physiopathology , Female , Follow-Up Studies , Hip Joint/physiopathology , Humans , Male , Osteoarthritis, Hip/etiology , Pain Measurement , Range of Motion, Articular , Retrospective Studies , Treatment Outcome , Young AdultABSTRACT
BACKGROUND: The improvement of engagement and involvement in communicative and socially centred exchanges for individuals with multiple and severe disability (MSD) presents complex and urgent challenges to educators. This paper reports the findings of an intervention study designed to enhance the interactive skills of students with MSD using an in-class mentor model of staff development to improve the skills and strategies of their communication partners in two distinct educational settings. METHODS: Observational data were collected on eight students with MSD and their 16 teachers and teachers' aides (paraprofessionals), using a multiple baseline across students design, replicated across special and general school setting types. RESULTS: Results indicated variable improvements in student alertness and increased communicative interactions. In some cases significant differences in communicative involvement and awake-active-alert activity were observed. CONCLUSIONS: These findings underline the complexity of variables involved in delivering educational and communicative interventions for staff working with this population. Implications for further research and application to daily practices in classrooms are discussed.
