Profound Multiple Disabilities Research Articles

Priority Support Areas and Learning Domains for Students with Severe and Profound Multiple Disabilities According to the Views of Pedagogical Specialists in Bulgaria And Flanders (Belgium)

The article presents the views of pedagogical specialists supporting students with severe and profound multiple disabilities in the Bulgarian and Flemish education systems about the priorities in education and support of the target group of children and youth. The analysis of the results obtained from the empirical research provides valuable information about the direction in which the greatest efforts are directed in the process of inclusive education in Bulgaria and Belgium, brings out some differences in the prioritization of support and training in the two groups of respondents and opens opportunities for discussion in a comparative plan and taking into account the point of view of the specialists as a key factor for the implementation of an effective process of support and education for students with severe and profound multiple disabilities.

Promoting Interaction and Shared Play Between Children with Profound Multiple Disabilities and Children Without Disabilities – a Pilot Study

Previous research shows that opportunities for shared interaction and play are beneficial for both children with and without disabilities. However, children with disabilities often experience limited opportunities to engage in play with peers. This study aimed to get insight into how interaction between children with profound multiple disabilities and children without disabilities can be promoted. Actions to promote shared play were explored through interviews with teachers and children in the course of a collaborative project with teachers at a school for children with an intellectual disability, situated within a mainstream school. According to the interviewed teachers, play could be promoted through adapting play rules, and materials, providing adult support, developing communication potentials, and time for play. The participating children without disabilities conveyed expressions of enjoyment and expressed ideas of how to support children with disabilities and adapt activities so that everybody could be a part of them. The results are discussed in light of previous research on creating opportunities for shared play between children with and without disabilities.

Effects of the Structured Water Dance Intervention (SWAN) on muscular hypertonia in adults with profound intellectual and multiple disabilities

This study aimed to evaluate the effect of Structured Water Dance Intervention (SWAN) on muscular hypertonia in individuals with profound intellectual and multiple disability (PIMD). Muscular hypertonia has a multitude of negative consequences for people with PIMD because it can lead to contractures, pain, mobility impairment, pressure ulcers that limits functional behavior as well as gross and fine motor function. Thirty-six individuals with PIMD in four Swedish regions were randomized to two groups in a multicenter, crossover design. Two withdrew participation, thus 34 individuals completed the intervention. The intervention was administered for 40 min once a week during a 12-week period. Outcomes related to muscular hypertonia were examined using the Modified Ashworth Scale (MAS), and based on accompanying assistants’ assessments. Hypertonia decreased from baseline to the end of the intervention period, as demonstrated by a decrease in MAS score. Hypertonia also decreased during the sessions, as shown by the assistants’ ratings. In conclusion, this study demonstrates that SWAN holds potential to reduce muscular hypertonia in people with PIMD and points out the importance of customized physical treatment alternatives. The study provides useful information for the design of future non-invasive, non-pharmacological interventions to reduce muscular hypertonia in PIMD.

Eye-tracking-based experimental paradigm to assess social-emotional abilities in young individuals with profound intellectual and multiple disabilities.

Individuals with Profound Intellectual and Multiple Disabilities (PIMD) experience a combination of severe cognitive and motor impairments frequently associated with additional sensory deficits and numerous medical disorders. The purpose of the present study was to propose an experimental paradigm based on eye-tracking that combines various pre-existing tasks from infancy research as an assessment tool. This would enable the investigation of social-emotional abilities in nine young individuals with PIMD through their visual preferences for different types of stimuli. The first objective was to test the feasibility of this paradigm, by expecting individuals to look more at the tasks’ presentation screen than elsewhere during its implementation. The second objective was to investigate whether PIMD individuals exhibit visual preferences for (a) biological (vs. non-biological) motion, (b) socially salient (vs. non-social) scenes, (c) the facial area of the eyes (vs. the mouth), (d) happy (vs. angry) faces, (e) objects of joint attention (vs. non-looked at ones), and for (f) prosocial (vs. anti-social) behaviors similar to those of a control group of typically developing children aged two years on average. Overall, the feasibility of this paradigm proved to be good, resulting in high individual looking rates that were not affected by the presentation or the content of the tasks. Analyses of individual social-emotional abilities, supported by the visual preference patterns of each PIMD individual, firstly revealed strong—but expected—variability both within and between subjects, and secondly highlighted some individual task-specific abilities although few similarities between these individual results and those of the control group were found. These findings underline the great relevance of using this type of paradigm for assessing PIMD individuals and thus contribute to a better understanding of their social and emotional development.

‘My son has lost his dignity’: dignity of persons with profound intellectual and multiple disabilities

The objective of this study is to describe and evaluate understandings of dignity of persons with profound intellectual and multiple disabilities. Intrinsic dignity cannot be lost and is inherent to being a human. Also, dignity is the extent to which these persons have enough positive experiences (individual dignity), have dignity in their relationships with familiar others (relational dignity), or with unknown others (societal dignity). While intrinsic dignity sometimes fails to include experiences of these persons and their family members, the other understandings are gradual, which means that these persons can lose their dignity. The understandings express a concern: the life of the person with severe disabilities is, respectively, worth respecting, living, sharing and caring about. We conclude that they can have dignity and that, in case of disagreement, it is important to clarify which dignity is meant and to make explicit the concerns at stake. Points of interest A mother stated, ‘My son has lost his dignity,’ while other parents assert that their child, like any other human being, cannot lose his dignity. The paper clarifies these differences between understandings of dignity. In this study, four understandings of dignity of persons with profound intellectual and multiple disabilities are evaluated. This means that their strengths and limitations are described. Parents and others, referring to dignity of persons with severe disabilities, want to express a concern, this paper argues. They want to make clear that the lives of these persons are worth respecting, living, sharing or caring about. Parents, health care professionals or others who disagree on dignity of a person with severe disabilities, this article concludes, should open themselves up for the other’s concerns. While their concerns may differ, they are both obviously concerned about this person, which is the starting point for providing good care and support.

Residential care staff are the key to quality of health care for adults with profound intellectual and multiple disabilities in Sweden

BackgroundPeople with profound intellectual and multiple disabilities (PIMD) have combined severe intellectual and physical disability and need extensive health care support. They cannot communicate by spoken language and need around the clock support. The health care for people with PIMD is typically provided by a number of different health care services in collaboration with residential care staff and their managers. The quality of health care for people with PIMD are important due to their limited ability to communicate their needs. The aim of this study was to explore residential care staff and manager’s experiences and views of health care services for adults with PIMD.MethodsThirteen semi-structured interviews with residential care staff (n = 7) and managers (n = 6) were conducted and analysed using qualitative content analysis.ResultsThe informants expressed a variety of experiences, under the theme was Quality of health care is enhanced through residential care staff. The theme was comprised of four subthemes: (1) Individually tailored support promotes quality, (2) Accessibility requires adaptation and prioritization by healthcare providers, (3) Disability competence promotes quality and safety and (4) Complex collaboration conditions between the person with PIMD, residential care staff and disability health care.ConclusionsThe residential care staff create quality of care in their role as representatives for adults with PIMD. The care situation is complex and requires adequate competence in the disability, the individual’s needs and adaptations to ensure quality of health care. It is also important to build collaboration with other services that are involved in the care of people with PIMD.

Effects of the “Care for Participation+” Intervention on the Participation of Adults With Visual and Severe or Profound Intellectual Disabilities: A Nonrandomized Controlled Trial

AbstractBackgroundThe “Care for Participation+” (CFP+) intervention was developed in order to change the attitudes of direct support professionals (DSPs) regarding the participation of adults with visual and severe or profound ID (VSPID).AimsThe aim of this study was to evaluate the effects of CFP+ on the participation of the target group.MethodsWe performed a pilot nonrandomized controlled trial with three arms. The effect of CFP+ on participation was compared to a usual care control group (n = 13), and a control group in which one element of CFP+ was implemented (n = 14). Participation was measured using specific domains of the Quality Of Life of People with Profound Multiple Disabilities (QOL‐PMD) questionnaire that was completed by the legal representatives and DSPs of adults with VSPID, and video‐observations of (initiatives for prompting) active involvement within 10 dyads comprising adults with VSPID and DSPs.FindingsThe effects of CFP+ on the QOL‐PMD were very small and not statistically significant. Qualitative analyses showed that in the CFP+ group, active involvement in activities of adults with VSPID and number of DSPs' initiatives to stimulate active involvement exceeded those within the two control groups.DiscussionCFP+ has positive effects on the active involvement of individuals with VSPID and on DSPs' initiatives to enhance this involvement. The unexpected small effects of CFP+ on the participation of these adults could be explained by several factors such as small sample size, ceiling effects, response shift, changes in the control group, and implementation barriers. Accordingly, the most effective elements of CFP+ could be further developed and investigated in combination with an improved implementation strategy.

Setting Individual Goals for Pupils with Profound Intellectual and Multiple Disabilities—Engaging in the Activity Area-Based Curriculum Making

The activity area-based curriculum model (AACM) is used in the Finnish basic education to support pupils—most of whom have profound intellectual and multiple disabilities (PIMD)—who could benefit more from skills that advance independent life coping. Existing studies have concentrated mainly on the Individual Education Plan (IEP) goal-setting process for pupils with milder disabilities than PIMD and have consistently demonstrated significant barriers in the process. This study explores the collaborative IEP goal-setting process for pupils with the AACM. Sixty-five Finnish special education teachers using the AACM participated in the study. Semi-structured interviews were analysed with thematic network analysis. The groups involved in the IEP goal-setting process were divided into main and side mediators. The main mediators were described as significant collaborators with important knowledge of the pupil, while side mediators rarely participated in the process. The special education teachers appeared to be leading the collaboration and were positioned in the middle of the main and side mediators. Further research should focus on the implementation of parents’ collaborative positions. Furthermore, practices and methods should be developed to reinforce the positions of group home staff, special education teacher colleagues and pupils with the AACM or PIMD themselves.

Fathers' Involvement in Rearing Children With Profound Intellectual and Multiple Disabilities.

The aim of this study was to explore father's involvement in rearing a child with profound intellectual and multiple disabilities (PIMD). In-depth, semi-structured interviews were conducted with seven fathers in Japan, and the data were analyzed using a qualitative inductive method. The relationship between the parents, in the context of childrearing, influenced father's involvement with their child with PIMD. Fathers improved their self-confidence in childrearing by discussing and sharing about their child's conditions and caregiving approaches with their spouse. Moreover, fathers' experience of being acknowledged and entrusted by their spouse with childrearing motivated and enhanced their involvement. On the contrary, fathers struggled with concerns regarding their family's future, the balance between childrearing and work, and their own health status. The current findings contribute to nurses' understanding of father's involvement in childrearing a child with PIMD and the development of support focusing on the parental dyadic relationship and coparenting behavior.

Belonging for people with profound intellectual and multiple intellectual disabilities: Pushing the boundaries of inclusion Nind, M. & Strnadová, I. (editors) Routledge, 2020, ISBN: 978‐0‐367‐20295‐8, paperback £29.99

Belonging for people with profound intellectual and multiple intellectual disabilities: Pushing the boundaries of inclusion Nind, M. & Strnadová, I. (editors) Routledge, 2020, ISBN: 978‐0‐367‐20295‐8, paperback £29.99

The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study

Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of persons with PIMD, we performed a qualitative study, conducting semi-structured interviews with eleven professional caregivers and thematically analysed them. In the interviews, these professional caregivers described examples of good and poor QoL. Good QoL was mostly described in emotional terms such as happiness, pleasure and enjoying things. Poor QoL was mostly described in physical terms such as pain, sickness and shortage of breath. The capability of persons with PIMD to influence the environment was described as an element of good QoL. Furthermore, these professional caregivers described how they assessed QoL. They ‘sensed’ QoL, they tested it (trial and error) and discussed QoL of persons with PIMD with colleagues. Participants emphasized the dependency of persons with PIMD on professional caregivers. Furthermore, these professional caregivers described feelings of failure and powerlessness if they could not assess or fulfil the needs of persons with PIMD. We conclude that these professional caregivers use their (tacit) knowledge to understand QoL of persons with PIMD. The relationship between QoL of persons with PIMD and professional caregivers needs more investigation, because of its consequences both for the persons with PIMD and the professional caregivers.

Book Review: Roberta S. Adler and Olga V. Samsonova-Jellison, Music Therapy for Multisensory and Body Awareness in Children and Adults with Severe to Profound Multiple Disabilities: The MuSense Manual

Book Review: Roberta S. Adler and Olga V. Samsonova-Jellison, <i>Music Therapy for Multisensory and Body Awareness in Children and Adults with Severe to Profound Multiple Disabilities: The MuSense Manual</i>

Profound Intellectual and Multiple Disabilities

Profound Intellectual and Multiple Disabilities

‘He Is, After All, a Young Man’: Claiming Ordinary Lives for Young Adults with Profound Intellectual Disabilities

This paper discusses youth and the significance of age in the lives of persons with profound intellectual and multiple disabilities. The analysis is based on an ethnographic research project that explores what makes a good life for this group of people. The findings indicate that whilst the meaning and significance of youth and age were discussed often by care workers and family members, age had very little significance in the lives of our research participants. Youth as a phase of life gets lost in the transition from children’s services to adult services: age in the lives of persons with profound intellectual disabilities means merely a move from one service system to another. For the care workers, age provides a way to evaluate and criticize the service system and whether it caters for the individual needs of persons with profound intellectual disabilities.

Music therapy for multisensory and body awareness in children and adults with severe to profound multiple disabilities: The MuSense manual (Adler &amp; Samsonova-Jellison)

This is a review of the book "Music therapy for multisensory and body awareness in children and adults with severe to profound multiple disabilities: The MuSense manual" authored by Roberta S. Adler and Olga V. Samsonova-Jellison.&#x0D; Title: Music therapy for multisensory and body awareness in children and adults with severe to profound multiple disabilities: The MuSense manual Authors: Roberta S. Adler &amp; Olga V. Samsonova-Jellison Publication year: 2017 Publisher: Jessica Kingsley Publishers Pages: 208 ISBN: 9781785927362 

Бариери пред ефективното обучение на учениците с тежки и дълбоки множествени увреждания в България и фламандската част на Белгия

The education of students with severe and profound multiple disabilities is one of the most discussed topics in the contemporary special education worldwide. The educational systems seek to create and implement effective models of organization of the educational process in order to ensure access to education and qualitative support for personal development. This article aims to present the educational inclusion of students with severe and profound multiple disabilities in Bulgaria and Flanders and discusses the barriers to effective education of children based on empirical study of the views and opinions of pedagogical specialists in both educational systems.

Music therapy for multisensory and body awareness in children and adults with severe to profound multiple disabilities: The MuSense manual

The need for connection is deeply rooted in humanity. Music therapists often address this core need, fostering greater self-awareness and improved quality of life while doing so. Roberta Adler and Olga Samsonova-Jellison have addressed this need and developed a program, the MuSense Program, to aid music therapists in working with individuals who have severe to profound multiple disabilities (PMD). By working within the PMD structure, music therapists will develop a skill set that includes an acute awareness of nonverbal communication and an increased ability to observe body movements. Scholarly information is supported by the authors’ subjective experiences within the field over a period of 40 years. The authors are passionate about their work as they express detailed insights gained through their clinical experiences. When working with children and adults with PMD, burnout can be a concern, as clinicians often do not receive as much feedback from clients as they give. The information provided in this text is thought provoking and accessible, focusing on how to best meet clients’ needs, while teaching a perspective that acknowledges small gains as large accomplishments. Parents, caregivers, and professionals may benefit from this book to better understand the approach; however, the text is primarily targeted toward music therapists.

Simple ideas that work: Celebrating development in persons with profound intellectual and multiple disabilities.

BackgroundThe purpose of this article is to share some lessons learnt by an interdisciplinary therapy team working with persons with profound intellectual and multiple disabilities (PIMD), implemented in diverse, low-income contexts over a period of 8 years.ObjectivesThe objective of all the activities described here was to provide increased stimulation and development opportunities for persons with PIMD within different settings (day care centre, residential centre or family home).MethodWe used an iterative action-learning approach where we applied existing evidence in the given context, reflected on and adapted strategies in collaboration with stakeholders on a cyclical basis. We focussed on achieving our objectives through ongoing hands-on training of the carers involved with the clients as we felt that by providing them with the knowledge and skills needed, plus ongoing support, these programmes would be more sustainable.FindingsIt took some time to put systems in place in care settings, but once they became part of the daily routine, they provided increased opportunities for learning for clients with PIMD. In addition, there were often marked changes in individual clients’ communicative and physical functioning, which in turn encouraged carers to find new and different ways to interact with, and stimulate, the persons with PIMD in their care.ConclusionOur hope is that parents and carers or professionals working in the field of PIMD in low-income contexts elsewhere may find one, some or all of these simple ideas useful in providing opportunities for learning, development and enjoyment for persons with PIMD.

The effects of tandem skiing on posture and heart rate in children with profound intellectual and multiple disabilities

ABSTRACTPurpose: The objective of study was to determine the effect of tandem ski (TS) activity on postural control and cardiac activity in children with profound intellectual and multiple disabilities (PIMDs).Method: Twenty children with PIMD and 20 age-matched controls (typically developed (TD) children) participated. Body segment movements were measured with inertial sensors (Physilog®) placed on the head, C7, trunk (including ECG) and pelvis with a seat reference. Each participant was measured during a 12-turn slalom pattern.Results: In each group, significant differences were observed between the head vs. trunk and head vs. pelvis angular speeds (p<0.001). In both groups, heart rate differed significantly during rest (PIMD 99 bpm, TD 97 bpm), exercise (PIMD 140 bpm, TD 139 bpm; rest vs. exercise p<0.001) and recovery (PIMD 101 bpm, TD 107 bpm; exercise vs. recovery p<0.001).Conclusions: In children with PIMD, TS elicits active postural control associated with cardiac activities similar to that of the controls.

The efficacy of antibiotic cycling therapy for patients with profound multiple disabilities

The efficacy of antibiotic cycling therapy for patients with profound multiple disabilities