Profound Intellectual Research Articles

重度・重複障害児を対象とした造形活動のアクション・リサ ーチII 造形活動における QOL 向上のための授業改善の方策

重度・重複障害児を対象とした造形活動のアクション・リサ ーチII 造形活動における QOL 向上のための授業改善の方策

Peer Interactions among Children with Profound Intellectual and Multiple Disabilities during Group Activities.

Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the children's positioning. Group activities for children with PIMD initiated by a direct support worker were video-recorded. The behaviour and positioning of the children and the behaviour of the direct support workers were coded. Limited peer-directed behaviour of the children with PIMD and peer interaction-influencing behaviour of the direct support workers are observed. Weak associations were found between the positioning or peer interaction-influencing behaviours and the behaviour of children with PIMD. Children with PIMD show social interest in each other during group activities. More knowledge is needed to create an environment which facilitates peer-directed behaviours of persons with PIMD.

Can You Help When It Hurts? Dogs as Potential Pain Relief Stimuli for Children with Profound Intellectual and Multiple Disabilities

Dear Editor, As it is widely recognized, individuals with profound intellectual and multiple disabilities (PIMDs), who are characterized by severe or profound motor disabilities combined with profound cognitive and sensory impairments [1], are at a significant high risk of pain from many sources, including daily care activities, medical procedures, and illness (e.g., [2,3]). Among the nonpharmacological interventions that have already been proposed for alleviating pain in individuals with significant neurologic impairments, increasing attention is currently being devoted to animal-assisted therapy (AAT) programs as effective pain relief interventions [4]. In this letter, we report first experimental data on the potential of therapy dogs as pain relief stimuli for children with PIMD. Given the lack of literature on AAT programs specifically developed for these individuals, we consider that the results here presented may constitute a promising platform to support further investigations. An exploratory study—approved by the Ethics Committee of the O'Porto University—was conducted aiming at assessing, in two children with PIMD, apparent pain relief induced by contact with a therapy dog immediately after a potentially painful care moment. Given the highly limited communication repertoire of the participants (and of children with PIMD in general), only behavioral (following Putten and Vlaskamp [3] and Green and Reid [5]) and heart rate (following Corff et al. [6]) measures were used to estimate pain levels. As to offer a comparison to pain alleviation that might be achieved through maternal touch, responses of the participants to contact with their mothers were …

Parental Attitudes Toward the Inclusion of Children With Profound Intellectual and Multiple Disabilities in General Primary Education in the Netherlands

Despite the growing introduction of inclusive education, children with profound intellectual and multiple disabilities (PIMD) are barely included. Because an underlying factor here may be the attitudes of those directly involved, the present study focuses on the attitude of parents and relating variables concerning experience with individuals with disabilities. A self-report questionnaire was completed by 190 parents of children attending general primary schools in the north of the Netherlands. Although parents showed an overall positive attitude, they were most negative about the inclusion of children with PIMD. In addition, no “experience with individuals with disabilities” was slightly negatively associated with the parents’ attitudes. To overcome barriers of the inclusion of children with PIMD, such as negative parental attitudes, the outcomes of the present study are discussed in the light of possible interventions.

The role of the external personal assistants for children with profound intellectual and multiple disabilities working in the children's home.

Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. A mixed method study was performed including qualitative data from interviews with 11 Swedish parents and nine external personal assistants and quantitative data from questionnaires answered by 60 families. For the child, the assistant's role was one of reinforcing, meaning supportive and empowering, and the child needed a high level of assistance. For the family, the role was one of balancing and the external personal assistant was more often found to assist in activities away from home while parents tended to assist within home and in family unit activities. In planning and implementation of external assistance, the child's needs as well as considerations of the whole family should be regarded.

Stability and change in sustainability of daily routines and social networks in families of children with profound intellectual and multiple disabilities.

Children with profound intellectual and multiple disabilities (PIMD) demand intense family accommodations from birth and onwards. This study used an exploratory and qualitative study design to investigate stability and change in sustainability of daily routines and social networks of Swedish families of children with PIMD. Eight families participated over two years in eco-cultural family interviews and social networks interviews collected at home visits. Data were analyzed descriptively and by manifest contents analysis. Results showed variations in sustainability of daily routines over time across families. The sustainability was linked to fathers' involvement, couples' connectedness and emotional support. Stability and change of social networks were characterized by low overlap between the child and family networks, the children's communicative dependency and low density of able communication partners. The results indicate that patterns of stability and change were linked both to family resources and child characteristics.

UNESCO Inclusion Policy and the Education of School Students with Profound Intellectual and Multiple Disabilities:Where to Now?

The education of school students with profound intellectual and multiple disabilities presents diverse challenges to practitioners, families and policymakers. These challenges are philosophically and ethically complex, and impact curriculum, assessment and pedagogy. Given the international ascendancy of both the UNESCO Policy Guidelines on inclusion in education and the principles of inclusion for people with disabilities with respect to human services policy and practice, the authors build on their previous work to advocate for renewed debate about the nature of school education for these students, and put forward four pathways to inform this debate.

Can you Know me Better? An Exploratory Study Combining Behavioural and Physiological Measurements for an Objective Assessment of Sensory Responsiveness in a Child with Profound Intellectual and Multiple Disabilities

Sensory assessment of individuals with profound intellectual and multiple disabilities (PIMD) can be difficult for several reasons, including the idiosyncratic reactions that these individuals exhibit to environmental stimuli. This case report presents a combination of behavioural and physiological measurements aimed at providing an objective assessment of the sensory responsiveness of a child with PIMD. The participant was presented with a set of nineteen stimuli commonly used during sensory interventions. Responsiveness to these stimuli was assessed in terms of motor movements, heart rate and electrodermal responses. Although the child only exhibited consistent motor reactions to three of the items, he showed consistent physiological reactions to a total of ten stimuli. Obtained data, although preliminary, suggest that combining behavioural and physiological measurements may constitute a useful resource for assessing the actual responsiveness of individuals with PIMD. With such a resource, people close to these individuals could fine tune their interventions and guarantee their well-being.

Day Services for People With Profound Intellectual and Multiple Disabilities: An Analysis of Thematically Organized Activities

One of the recent ideas to emerge in the Netherlands for improving the quality of activities provided for people with profound intellectual and multiple disabilities is to organize these activities thematically. Among the expected effects was that more activities with a greater variety would be provided and more attention would be offered to each person. A study of 23 attendees was undertaken in one day center to assess the effect of this new program effort. Data were collected on the number, type, and length of activities offered as well as the duration of individual attention each attendee was given during each activity. Data were collected using diary entries made during 20 morning or afternoon sessions over a period of 4 weeks. The average number of activities was well above the average when compared with regular centers; however, 63% of the activities were care-related activities, activities relating to starting and finishing the day (e.g., entering the center, putting on coats), and time spent on waiting and resting. The type of activities offered exhibited less variety than expected—audiovisual activities, such as watching television, constituted a considerable part of the program, and artistic and creative activities and “microtechnology” were offered less frequently or not at all. Increased personal time by the use of thematic rooms was not supported by the data. Authors note that thought should be given to the way that staff members work, in particular to whether they might be linked to a specific theme room or an individual attendee. The latter might contribute to more intensive relationship building and the acquisition of more specific knowledge about a number of attendees, while the former might contribute to the acquisition of more specific knowledge about a specific theme room's possibilities.

The use of a Multisensory Environment for Assessment of Sensory Abilities and Preferences in Children with Profound Intellectual and Multiple Disabilities: A Pilot Study

Background To offer appropriate activities within the curriculum for children with profound intellectual and multiple disabilities (PIMD) is a challenge. An important determinant of the adequacy of an activity is whether teachers have detailed and specific knowledge about the sensory abilities and contextual preferences of these children. Materials and method In this pilot study, the multisensory environment (MSE) was used to gather this kind of detailed information. In total, 23 children with PIMD and three teachers participated. The teachers functionally assessed the sensory abilities and contextual preferences of the children before and after an intervention period during which the teachers carried out individual activities with the children in a MSE. Results and conclusions The results indicate that using the MSE helps teachers in functional assessment and it enables them to use this information in the classroom situation.

Analysis of Daytime Activities for Children with Profound Intellectual and Multiple Disabilities in Specific Settings

Analysis of Daytime Activities for Children with Profound Intellectual and Multiple Disabilities in Specific Settings

Transfer of Information Between Parents and Teachers of Children with Profound Intellectual and Multiple Disabilities at Special Educational Centres

Background: Because of the complexity of the problems that affect children with profound intellectual and multiple disabilities (PIMD), communication between parents and teachers at special educational centres is indispensable. Logs are widely used in the Netherlands although only little is known about the effectiveness and efficiency of communication logs.Method: Sentences written in communication logs were analysed with two categorization systems. Frequencies and percentages of topics in each category were computed for teachers and for parents.Results: Most entries concern ‘exchanging experiences’ and ‘requesting or giving information’; teachers write significantly more than parents.Conclusion: The results show that communication logs are not very effective or efficient in relation to an adequate information transfer between parents and professionals to optimize the mutual support of children with PIMD. The article concludes with some recommendations for the practical use of these communication logs.

Support Characteristics Associated With the Quality of Life of People With Profound Intellectual and Multiple Disabilities: The Perspective of Parents and Direct Support Staff

Abstract The authors examined which support characteristics are associated with the quality of life (QOL) of people with profound intellectual and multiple disabilities (PIMD). The authors invited parents and direct support staff of people with PIMD to adopt the perspective of their child or the person with PIMD for whom they care. Some 76 parents and direct support staff of people with PIMD were interviewed, and to obtain data, transcripts were analyzed in‐depth. The respondents mentioned: (1) characteristics with regard to the structure of the setting (physical environment, staff ratio, staff turnover, group size, and group composition); (2) characteristics with regard to the internal organization of the support (partnership, teamwork, interdisciplinarity, and support planning); and (3) characteristics with regard to the support staff (experience, sensitive responsiveness, commitment and motivation, physical strength, knowledge and skills, and self‐reflection). The respondents considered structural as well as operating features of the support setting to be important for the QOL of people with PIMD. The authors conclude that their main emphasis, however, was on the central role of direct support staff in supporting people with PIMD.

Becoming Aware of What You Know or Need to Know: Gathering Client and Context Characteristics in Day Services for Persons With Profound Intellectual and Multiple Disabilities

Abstract Persons with profound and multiple disabilities (PIMD) are dependent on staff to be sufficiently knowledgeable as to provide them with appropriate day services. One important determinant of the appropriateness and adequacy of a day support program is the level to which staff have detailed and specific knowledge about the functional abilities and the sensory and contextual preferences of their clients, and use this information when providing day activity center services. The authors conducted a study designed to determine what staff know about their clients’ capabilities and functioning and whether they applied this knowledge to the delivery of day services. Thirty‐three direct care activity center staff members from seven different residential facilities throughout the Netherlands were involved in the research. The study used a questionnaire designed as a flow chart, which parsed knowledge within nine categories, five related to the client’s functional abilities and four related to the client’s sensory and contextual preferences. Results indicate that staff generally lacked specific information on the adults in their day activity center, and this impaired their ability to select and provide appropriate activities. The authors concluded that a relatively simple and easy‐to‐design questionnaire can provide a good overview of the special training that is needed by staff who are responsible for offering activities to persons with PIMD.

Behavioral and Psychosocial Outcomes of a 16‐Week Rebound Therapy‐Based Exercise Program for People With Profound Intellectual Disabilities

Abstract People with profound intellectual disabilities rarely experience a physically active lifestyle, and their long‐term physical inactivity likely contributes to poor health. The authors developed and implemented a pilot exercise program for persons with a profound intellectual disability and conducted a study to evaluate the effort. The development of mobility, independent movement, and posture profiles resulted in a 16‐week needs‐led exercise program based on “rebound therapy,” with additional exercises, including active and passive exercise, walking, swimming, hydrotherapy, and team games. Study participants undertook 3–5 additional periods of low‐impact exercise per week, providing moderate to low levels of activity judged in terms of energy costs. The program was evaluated using physiological measures (resting pulse, systolic and diastolic blood pressure, weight, height, body mass index, seizure activity, activity levels), counts of challenging behaviors, and by indices of quality of life and alertness outcomes. Participation in the exercise program was associated with decreases of frequency of challenging behaviors and increases in quality of life (freedom scores) and alertness. The authors concluded that barriers to the development and implementation of ongoing exercise programs in continuing care settings can be overcome by trained and motivated care staff.

A Cross Thematic Curriculum Framework and Children with Profound Intellectual Disability

A Cross Thematic Curriculum Framework and Children with Profound Intellectual Disability

The Impact of Medical Conditions on the Support of Children with Profound Intellectual and Multiple Disabilities

Background The aim of this study was to analyse the impact of medical conditions of children with profound intellectual and multiple disabilities on the professional support they receive in centres for special education.Method The medical files, the daily records and daily communication records between parents and professionals were reviewed for 48 children with profound intellectual and multiple disabilities in three centres for special education in the Netherlands. In addition, interviews were held with direct service professionals and medical doctors to complete the data collection.Results Not only do major medical conditions, such as hospital admissions, but also minor medical conditions, such as an increase in body temperature or the drowsy state a child is in as a result of a seizure, have an impact on performing activities and therapies in a child's educational centre.Conclusions As a result of the prevalence of the medical conditions, professionals may decide not to carry on actions that were planned or do not offer an alternative programme. The risk of many ‘empty’ hours despite the presence of highly specialized professional support is high.

Impact of Surgical and Orthotic Intervention on the Quality of Life of People with Profound Intellectual and Multiple Disabilities and Their Carers

The increasing analysis of quality of life issues for people with disabilities has not been paralleled in relation to people with profound intellectual and multiple disabilities (PIMDs). This is nowhere more the case than with regard to the impact of health status on their quality of life. In addition, people with PIMDs, and the interventions which they require, have not been included within wider considerations of the economics of healthcare and its relation to rational decision-making regarding medical provision. The present exploratory study considered the impact of a wide range of surgical and orthotic interventions on the quality of life of 27 children and adults with PIMDs. These were explored on a pre–post-test basis with respect to: (1) the economic costs associated with surgical and orthotic interventions; (2) clinical assessment of function and behaviour; (3) the participants' and carers' quality of life; and (4) carer satisfaction with the interventions. The results are presented with respect to these individual areas and the extent to which the findings are congruent. The need for the development of these measures to meet the specific requirements of this population and the development of a more formal model integrating these steps are considered.

Reviews

Book reviewed in this article:Working in Group Care by Adrian WardHaving a Place in the Community: In Search of Best Practice for People with DisabilitiesDown Syndrome … Moving Through Life by Yvonne Burns and Pat Gunn (eds)Community Mental Health: Practical Approaches to Long‐term Problems by Steve MorganOrganising a Specialist Play/Leisure Scheme for Young People who have Profound and Multiple Disabilities: An Information Pack by Helen MountLinkages: Effective Networking in Social Care by Malcolm PayneRead Easy 2 by Margaret R. Marshall and Dorothy PorterHome at Last: How Two Women with Profound Intellectual and Multiple Disabilities Achieved Their Own Home by Pat Fitton, Carol O'Brian and Jean Willson

Assessing the Occurrence of Learning in Children with Profound Intellectual Disability: A Conditioning Approach

Although children with the most profound forms of intellectual disability are clearly capable of learning, they are frequently unable to acquire skills and knowledge through the familiar social learning processes of modelling and verbal instruction. Instead, they rely on more basic learning processes, such as habituation, classical conditioning, and operant conditioning. This paper defines these basic processes and indicates their importance in allowing behaviour to adapt flexibly to changing environmental circumstances. Research on basic learning processes in which children and young adults with profound intellectual disability have acted as participants is then evaluated. The literature indicates that work of this kind is of clear relevance to those involved in facilitating the development and education of children with intellectual disability. This is because research and theory in the area of learning suggests effective ways of assessing non‐verbal children's cognitive capabilities and preferences and...