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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. IMPLICATIONS FOR REHABILITATION: 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. [ABSTRACT FROM AUTHOR]

Siblings are important in the lives of individuals with an intellectual disability and pervasive support needs; however, adults' experiences of the things they do with or for their siblings with pervasive support needs remain underexplored. This study examined positive and challenging aspects of their roles related to their siblings. An online questionnaire was completed by 55 adults whose siblings had pervasive support needs. An inductive approach was used to thematically analyze open-ended questions about their experiences. The respondents described rewarding experiences of being with their siblings, combined with a sense of care and responsibility, and noted how their experiences were affected by their siblings' support needs. "Being of service" was experienced as both rewarding and as a demanding responsibility. Collaboration with family members and health care professionals was another overarching theme. Our findings highlighted the valuable mutual contributions of siblings in each other's life when one of them has pervasive support needs. Understanding adults' experiences relating to their siblings who have pervasive support needs enables service providers to facilitate their contact and support. In addition, these findings can provide input for government agencies and organizations that provide support for people with disabilities by increasing awareness about siblings' perspectives. [ABSTRACT FROM AUTHOR]

Background: Communicating with people with severe/profound intellectual disabilities is essential for person‐centred, rights‐based support. Despite a proliferation of research around COVID‐19, there is a dearth of evidence exploring its impact on communication with people with severe/profound intellectual disabilities. This study aimed to explore disability support staff experiences of communicating with people with severe/profound intellectual disabilities through the COVID‐19 pandemic. Methods: A qualitative descriptive study was undertaken. A purposive sample of six disability support staff who supported people with severe/profound intellectual disabilities through the pandemic in four Irish residential services participated in online, semistructured interviews. Data were analysed thematically. Findings: Six themes were generated including unwavering commitment; running on empty; being a safe haven; empathic understanding; heightened sensitivity and new insights. Participants discussed the impact of COVID‐19 on communicating with people they support, the contextual challenges, how these were managed/overcome and new learning that emerged. Although communication challenges did present because of COVID‐19 restrictions, communication remained a priority. Conclusions: Despite the challenges experienced by disability support workers, their unwavering commitment to ensuring the well‐being of people with severe/profound intellectual disabilities was identified. This was a small‐scale qualitative study but highlights areas warranting further research and makes recommendations for practice and service planning. Accessible Summaries: The restrictions during the COVID‐19 pandemic made it very hard to interact with people.This study looked at disability support workers' experience of interacting with people with severe/profound intellectual disabilities who live in residential services.The study participants talked about how important it was to be there for a person with severe/profound intellectual disability because visitors were not allowed, and they might not understand why.It is important that we use what we learned through this challenging time to provide better support in the future. [ABSTRACT FROM AUTHOR]

Background: Children with profound intellectual disabilities are unable to do anything for themselves and require full-time care in healthcare facilities. While caring for children, secondary caregivers become overwhelmed. Coupled with little or no support, the overwhelming work affects their psychological, social and financial well-being. Mental healthcare practitioners have perspectives on conditions under which secondary caregivers work and how can they be supported. Little is known about such perspectives. Objectives: This study aims to explore and describe the perspectives of mental healthcare practitioners regarding the conditions under which secondary caregivers of children with profound intellectual disabilities work and how can they be supported. Method: A qualitative-exploratory-descriptive and contextual research design was adopted using a non-probability purposive sampling technique. This study was conducted in Gauteng province. Semi-structured individual interviews were performed to collect data. Content data analysis and ATLAS.ti were used to analyse the data. Results: Knowledge and skills development, stress reduction, resources and motivation were themes that emerged. Conclusion: This study explored and described the perspectives of mental healthcare practitioners regarding the conditions under which secondary caregivers of children with profound intellectual disabilities work and how can they be supported. If implemented, perspectives can improve the holistic well-being of secondary caregivers. Contribution: This study broadened an understanding of how secondary caregivers can be supported. Future researchers can use study results to develop programmes, intervention strategies and frameworks to support secondary caregivers.

Background: Adult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume. Method: We examined these roles among 58 participants from the Netherlands, who completed an online questionnaire. Results: Most participants (89.7%) assumed multiple roles, and the majority were content with their roles. Between 7% and 58% indicated that they were the only individuals providing a certain role. Shared roles primarily involved healthcare professionals, other siblings, and parents. Almost half the participants (48.2%) assigned higher scores for the amount of support provided than for the experienced burden. Conclusions: Adult siblings often assume multiple roles. The shared roles emphasise the importance of collaboration. [ABSTRACT FROM AUTHOR]

Copyright of Szkoła Specjalna is the property of Akademia Pedagogiki Specjalnej im Marii Grzegorzewskiej and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

People with profound and multiple learning disabilities are often excluded from the processes of knowledge production and face barriers to inclusion in research due to cognitive and communicative challenges. Inclusive research—even when intending to be inclusive—tends to operate within criteria that exclude people with profound and multiple learning disabilities. The aim of this article is to provide a state-of-the-art review of the topic of inclusive research involving people with profound disabilities and thereby challenge traditional assumptions of inclusive research. The review presents themes that will inform a discussion on how to challenge the criteria in ways that make it possible to understand inclusive research for people who communicate in unconventional ways. We argue that a fruitful way of rethinking inclusive research is by applying a sensory-dialogical approach that privileges the dialogical and sensory foundations of the research. We suggest this might be a way to understand inclusive research that regards the person's communicative and cognitive distinctiveness. [ABSTRACT FROM AUTHOR]

Professional work for mothers of children with disabilities is described in the literature as a buffer factor that allows them to achieve a sense of satisfaction and self-realization. At the same time, mothers who want to return to this activity after maternity or parental leave encounter numerous difficulties, leading to resignation from further search. As a result, they most often switch to various types of benefits, dealing with the care and upbringing of their child. The aim of the article is to present the results of research on the importance of professional work for mothers of children with severe intellectual disabilities. The research studies determined the percentage of professionally active parents, the mother's sense of satisfaction with her professional status, as well as the impact of the child's disability on this activity and the relationship between professional work and parental attitude presented by the mother. [ABSTRACT FROM AUTHOR]

Background: High‐quality, affective relationships are built on meaningful moments of interaction, which are challenging for support staff to establish with people with profound intellectual disabilities. Therefore, we explored what makes a moment of interaction meaningful to support staff and what circumstances facilitate meaningful moments of interaction taking place. Method: Five direct support staff took part in unstructured, in‐depth interviews. The interviews were analysed using interpretative phenomenological analysis (IPA). Member checks were also conducted. Results: Support staff experienced moments of interaction as meaningful because they felt a connection with a person with profound intellectual disabilities and/or they had the feeling of being meaningful for this person. Staff‐related and contextual circumstances facilitating meaningful moments of interaction to take place were described. Conclusions: Meaningful moments of interaction are highly valued by support staff, who believe these moments are valued by persons with profound intellectual disabilities as well. Implications for daily practice are described. [ABSTRACT FROM AUTHOR]

Copyright of Man - Disability - Society / Człowiek – Niepełnosprawność – Społeczeństwo is the property of Akademia Pedagogiki Specjalnej im Marii Grzegorzewskiej and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Introduction: Little is known about the experiences of mothers who care for adult children with profound intellectual disabilities (ID). The aim of this study was to explore these experiences from their perspective. Parenting adult children with profound ID presents a type of maternal experience that differs from that commonly experienced by other mothers. Methods: Researchers conducted narrative interviews with 34 Polish mothers with adult children with profound ID. A narrative interview was used, a process that resembles an in‐depth, free‐flow conversation. Through follow‐up questions, researchers encouraged the interviewees to share stories of their personal experiences of motherhood. The information was shared during the participant interviews using analytical methods, based on theoretical and methodological concepts developed within the biographical sociology framework outlined by Fritz Schütze. The respondents were asked to share their thoughts about their experiences as mothers from past, present, and future perspectives. Implications: Gaining a better understanding of and uncovering details about the motherhood experiences of women with adult children with profound disabilities are important so as to better understand ways to better support mothers in such situations. It is especially important to know about the ways in which these women perceive their experiences and to understand the social context that impacts their experiences and perceptions. [ABSTRACT FROM AUTHOR]

Copyright of Man - Disability - Society / Człowiek – Niepełnosprawność – Społeczeństwo is the property of Akademia Pedagogiki Specjalnej im Marii Grzegorzewskiej and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Artikkelen omhandler alvorlig utviklingshemming og beslutningsstøtte. Studien utforsker tjenesteyteres erfaringer med beslutningsstøtte sammen med personer med alvorlig utviklingshemming i kommunale bofellesskap. Tre fokusgruppeintervju med i alt 19 tjenesteytere fra tre bofellesskap i tre forskjellige kommuner ble gjennomført. Det er gjennomført en temasentrert analysemetode inspirert av systematisk tekstkondensering. Følgende hovedtema ble analysert frem: 1) lite bevissthet om beslutningsstøtte, 2) viktighet av kroppslig kommunikasjon og kunnskap om den andre, 3) beslutningsstøtte realiseres i hverdagen, 4) å tåle usikkerhet i det daglige omsorgsarbeidet og 5) rutiner og strukturer utfordrer beslutningsstøtte. I eksisterende forskning og politiske føringer om beslutningsstøtte vektlegges personens kognitive og rasjonelle funksjoner. Denne studien bidrar i stedet til å synliggjøre hvordan tilrettelegging for beslutningsstøtte er kroppslig fundert og inngår som en del av det daglige omsorgsarbeidet. I tillegg viser studien at dette er et komplekst og krevende arbeid kjennetegnet av stor usikkerhet med rom for feiltolkninger. Tjenesteyternes beslutningsstøtte i møte med personer med alvorlig utviklingshemming handler om å sikre grunnleggende menneskerettigheter i hverdagslige omsorgspraksiser.

Background:  Children with profound intellectual disabilities are unable to do anything for themselves and require full-time care in healthcare facilities. While caring for children, secondary caregivers become overwhelmed. Coupled with little or no support, the overwhelming work affects their psychological, social and financial well-being. Mental healthcare practitioners have perspectives on conditions under which secondary caregivers work and how can they be supported. Little is known about such perspectives., Objectives:  This study aims to explore and describe the perspectives of mental healthcare practitioners regarding the conditions under which secondary caregivers of children with profound intellectual disabilities work and how can they be supported., Method:  A qualitative-exploratory-descriptive and contextual research design was adopted using a non-probability purposive sampling technique. This study was conducted in Gauteng province. Semi-structured individual interviews were performed to collect data. Content data analysis and ATLAS.ti were used to analyse the data., Results:  Knowledge and skills development, stress reduction, resources and motivation were themes that emerged., Conclusion:  This study explored and described the perspectives of mental healthcare practitioners regarding the conditions under which secondary caregivers of children with profound intellectual disabilities work and how can they be supported. If implemented, perspectives can improve the holistic well-being of secondary caregivers.Contribution: This study broadened an understanding of how secondary caregivers can be supported. Future researchers can use study results to develop programmes, intervention strategies and frameworks to support secondary caregivers.

Persons with profound intellectual disability (PID) are mostly not able to use assistive technology (AT) independently. Caregivers play an important mediating role in implementing AT in the daily life of persons with PID. Both first-order barriers, extrinsic to caregivers, and second-order barriers, intrinsic to caregivers, influence the attitudes and behaviors of caregivers with regard to AT-use. It could be asked if increased knowledge on and experience with AT may impact the effect of first- and second-order barriers. This study investigated how knowledge and experience influence the professional caregivers' beliefs about which factors may impact the AT use in persons with PID and their intentions to use AT for persons with PID. A questionnaire on the experienced limitations and successes in using AT was developed. The questionnaire was send to professionals working with or responsible for persons with PID in various countries in Europe. In total the answers of 195 respondents were included in this study. This study's results demonstrate that AT is used for various reasons in persons with PID, mostly to support communication and interaction or for fun or relaxation. Based on the answers of the respondents can be concluded that both experience and knowledge of caregivers seem to influence first- and second-order barriers. Besides, a possibility to overcome the second-order barriers is to provide professionals with possibilities to increase their knowledge and experience. AT for persons with PID is mostly used for communication and interaction or for fun and relaxation. Professional caregivers belief that AT-use may positively influence various aspects in the life of persons with PID, especially communication and interaction, active engagement and participation in activities, and self-esteem of the person. Caregivers need to have sufficient experience in order to rate the barriers of AT-use as less limited in the group of persons with PID. In order to overcome the barriers experienced in implementing AT in persons with PID, knowledge of caregivers is essential. [ABSTRACT FROM AUTHOR]

This study aims to obtain knowledge of how ASD individuals differ from their normally developed equals in terms of physical literacy and quality of life on a stage of early adolescents. Data have been collected from two samples: 18 males with autism spectrum disorders (ASD) aged 11-13 years (main group) and 30 males aged 11-12 years without ASD diagnosis (control group, CG). Canadian Assessment of Physical Literacy - second edition (CAPL-2) has been applied for assessing the level of physical literacy. Pediatric Quality of Life Inventory (PedsQL™4.0) has been used to assess the quality of life. Children with ASD have the most significant lag in static strength endurance of muscles (84%), coordination, dynamic, and static balance lag behind the standard (by 67% to 45%). The quality of life following the Emotional Functioning scale is relatively low both in children with ASD (58.42 ± 19.51 points) and healthy respondents (69.50 ± 17.04 points). Respondents with ASD indicate that it is hard to establish good relationships with other children (47.37%), had complaints about bullying (21.05%), and maintain the required pace of the game (68.43%). Physical education programs should focus more on coping with disabled children in the integration environment and better preparation of ASD children for physical activity which requires social interaction like playing sports games. [ABSTRACT FROM AUTHOR]

The purpose of this qualitative study was to evaluate the motherhood experience when caring for adult children with profound intellectual disabilities. The study was conducted in Poland with a group of 34 mothers. Data was collected and the qualitative methodology was applied, using in-depth narrative interviews. The results of the research indicated that these experiences also include various critical events; experiences that became part of the motherhood to which the women attributed personal meaning. The study results suggest the need for state reform measures to support mothers of adults with profound intellectual disabilities and at the same time, for many families. [ABSTRACT FROM AUTHOR]

Chromosome 1q41‐q42 deletion syndrome is a rare cause of intellectual disability, seizures, dysmorphology, and multiple anomalies. Two genes in the 1q41‐q42 microdeletion, WDR26 and FBXO28, have been implicated in monogenic disease. Patients with WDR26 encephalopathy overlap clinically with those with 1q41‐q42 deletion syndrome, whereas only one patient with FBXO28 encephalopathy has been described. Seizures are a prominent feature of 1q41‐q42 deletion syndrome; therefore, we hypothesized that pathogenic FBXO28 variants cause developmental and epileptic encephalopathies (DEEs). We describe nine new patients with FBXO28 pathogenic variants (four missense, including one recurrent, three nonsense, and one frameshift) and analyze all 10 known cases to delineate the phenotypic spectrum. All patients had epilepsy and 9 of 10 had DEE, including infantile spasms (3) and a progressive myoclonic epilepsy (1). Median age at seizure onset was 22.5 months (range 8 months to 5 years). Nine of 10 patients had intellectual disability, which was profound in six of nine and severe in three of nine. Movement disorders occurred in eight of 10 patients, six of 10 had hypotonia, four of 10 had acquired microcephaly, and five of 10 had dysmorphic features, albeit different to those typically seen in 1q41‐q42 deletion syndrome and WDR26 encephalopathy. We distinguish FBXO28 encephalopathy from both of these disorders with more severe intellectual impairment, drug‐resistant epilepsy, and hyperkinetic movement disorders. [ABSTRACT FROM AUTHOR]

Copyright of Szkoła Specjalna is the property of Akademia Pedagogiki Specjalnej im Marii Grzegorzewskiej and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Man - Disability - Society / Człowiek – Niepełnosprawność – Społeczeństwo is the property of Akademia Pedagogiki Specjalnej im Marii Grzegorzewskiej and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Man - Disability - Society / Człowiek – Niepełnosprawność – Społeczeństwo is the property of Akademia Pedagogiki Specjalnej im Marii Grzegorzewskiej and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

The aim of this paper is to present the reality of education and rehabilitation faced by people with profound intellectual disabilities in Poland; as seen from the perspective of the past, present, and future, with an attempt to identify the determinants of these situations. The paper addresses these matters in a threefold context which includes a description of the specific characteristics of the educational and rehabilitation situations of people with profound intellectual disabilities in Poland, an analysis of the characteristics of diagnosis as well as the structure of the education system, and alternatives for adults with profound disabilities. Researchers conducted an extensive analysis of literature, legal acts and government reports presenting and evaluating the situation of people with profound intellectual disability from childhood to maturity in Poland. The results of this study make it possible to get to know and better understand the situation of the discussed group of people and their carers. Furthermore, the theoretical analyses carried out show that the structure of education offered to people with profound intellectual disabilities in Poland requires change that takes into account the autonomy of the individual and their rights in the context of national and international legal mandates. [ABSTRACT FROM AUTHOR]

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.

One goal of disability policies in Sweden and other countries is to ensure that people with disabilities are afforded an equal level of daily life participation as other citizens. However, few studies have examined this in adults with profound intellectual disabilities (PID) or profound intellectual and multiple disabilities (PIMD). This study used a phenomenographic approach to interview managers and staff at a social care organisation in a medium-sized Swedish municipality. It aimed to elucidate and describe conceptions of participation to highlight conceptual variations. Divergent conceptualisations were found, reflecting a lack of organisational consensus about the meaning of participation. Trying to fulfil policy goals of daily life participation for adults with PID or PIMD without a common understanding of the meaning of participation is difficult, so people at all levels of an organisation need to have a shared understanding and definition of it.

This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

One goal of disability policies in Sweden and other countries is to ensure that people with disabilities are afforded an equal level of daily life participation as other citizens. However, few studies have examined this in adults with profound intellectual disabilities (PID) or profound intellectual and multiple disabilities (PIMD). This study used a phenomenographic approach to interview managers and staff at a social care organisation in a medium-sized Swedish municipality. It aimed to elucidate and describe conceptions of participation to highlight conceptual variations. Divergent conceptualisations were found, reflecting a lack of organisational consensus about the meaning of participation. Trying to fulfil policy goals of daily life participation for adults with PID or PIMD without a common understanding of the meaning of participation is difficult, so people at all levels of an organisation need to have a shared understanding and definition of it. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to explore agreements in the way parents of a person with profound intellectual and multiple disabilities and professionals perceive the support in terms of its family-centredness in order to gain a better understanding of their collaboration. Method: An adapted version of the Dutch Measure of Processes of Care was completed by 109 parents, and an adapted version of the Dutch Measure of Processes of Care for service providers was completed by 144 professionals. Agreements between parents and professionals were analysed using multilevel analysis. Results: In general, the parents and the professionals disagreed on occurrence and importance of both the Enabling and Partnership scale and the Respectful and Supportive Care scale. Conclusion: In order to deliver family-centred support, service providers should be aware that there are disagreements between the parents’ perception of what is important in the support provided and the perception of the professional. [ABSTRACT FROM AUTHOR]

Background: The transition to adulthood has been described as a difficult time in the lives of young people with intellectual disability. There has been little emphasis on young people with severe or profound intellectual disability specifically, even though their pathways may differ, due to greater support needs across the life course. Methods: A systematic review was conducted utilising Bronfenbrenner's ecological model to inform framework analysis to synthesise qualitative findings. Results: Taking an ecological perspective proved valuable. The transition process was described as stressful and barriers were identified across the ecological levels. Parents accounted for the majority of participants in studies, and the needs of young people and their parents emerged as highly interdependent. Conclusion: Themes reflect the complex nature of the question what adulthood should look like for individuals with severe or profound intellectual disability. There is a lack of involvement of multiple stakeholders and young people themselves within studies. [ABSTRACT FROM AUTHOR]

Purpose: This study investigated what areas of International Classification of Functioning, Disability and Health were documented in implementation plans for adults with profound intellectual disability or profound intellectual and multiple disabilities with focus on participation. Methods: A document analysis of 17 implementation plans was performed and International Classification of Functioning, Disability and Health was used as an analytic tool. Results: One hundred and sixty-three different codes were identified, especially in the components Activities and participation and Environmental factors. Participation was most frequently coded in the chapters Community, social and civic life and Self-care. Overall, the results showed that focus in the implementation plans concerned Self-care and Community, social and civic life. The other life areas in Activities and participation were seldom, or not at all, documented. Conclusions: A deeper focus on participation in the implementation plans and all life areas in the component Activities and participation is needed. It is important that the documentation clearly shows what the adult wants, wishes, and likes in everyday life. It is also important to ensure that the job description for staff contains both life areas and individual preferences so that staff have the possibility to work to fulfill social and individual participation for the target group. [ABSTRACT FROM AUTHOR]

Abstract: Background: Little is known about the hospitalisation rate of adults with severe/profound intellectual disability (PID) presenting at emergency services or about the appropriateness of hospital admissions in this population. Examining the possible differences in the patterns of hospitalisation between people with PID and those without intellectual disability (ID) may shed light on aspects of health and illness in these patients and may in turn make it possible to differentiate more clearly between mild‐moderate ID and PID. Methods: After an evaluation of the emergency visits made by adults with PID and by people without ID, patients in both groups requiring one or more hospitalisations were subsequently followed up for 18 months. The appropriateness of the decision to hospitalise was assessed using the ambulatory care‐sensitive conditions index. Results: There were no differences in the proportion of people with PID and controls admitted to hospital after their emergency visit. The median hospital stay was higher for PIDs: 7.5 vs. 4 days for controls. People with PID were admitted more than controls for respiratory reasons and somewhat less for other somatic causes unrelated to the nervous system. There were no admissions for psychiatric causes in the group with PID other than unspecified conduct disorders. There were no differences in other diagnostic groups. The rate of inappropriate admissions was similar in the two study groups. Conclusions: In contrast to previous results reported for the group with ID as a whole, patients with PID consulting the emergency service were not admitted to hospital more frequently than the general population nor did they present a higher rate of inappropriate admissions. These results support the utility of maintaining two distinct groups of people with ID: mild‐moderate and severe‐profound. [ABSTRACT FROM AUTHOR]

We explored nurse carer experiences with people with severe and profound intellectual disability in a care and rehabilitation centre in South Africa. Informants were a convenience sample of 10 nurses (females = 7; males = 3; mean years of service = 7.8, SD = 4.8 years). They completed an unstructured interview on their care provision experiences. The data were thematically analysed using Tesch’s method of open coding. Findings resulted in the following three themes to characterise the nurse carer experiences: compassion, person-centred care, and importance of parent involvement. Compassionate and person-centred care is fundamental to the establishment of a therapeutic relationship between nurse carers and people with severe and profound intellectual disability. [ABSTRACT FROM AUTHOR]

Background Little information is available regarding the visits made by persons with profound intellectual disability (PID) to general hospital emergency departments (ED). This study aims to know whether persons with PID who attend ED are given the same type of diagnoses as people with no such disability. Methods Over a period of 18 months, we gathered data from all non-scheduled visits to an ED by persons with PID to identify the reason for consultation (according to the classification used by the Spanish Society for Emergency Nursing) and the final diagnosis upon discharge. The results were compared with data obtained from a control group of people with no ID who attended an ED for any reason during the same period. Results Somatic complaints were the main reason for ED attendance among persons with PID (90% of consultations). These complaints were more often related to the central nervous system than was the case among non-ID patients (16 vs. 4.7%), whereas other kinds of non-central nervous system somatic complaint were less common among persons with PID (74 vs. 91%). A diagnosis implying physical pain was given less often to people with PID than to controls (3 vs. 20%). Conclusions The results suggest that persons with PID are less able to conceptualise and communicate information about their symptoms, especially as regards pain, and that this influences the diagnosis they are given when attending an ED. Professionals working in this environment need to be aware of this possibility so as not to underestimate or overlook such symptoms and the illnesses related to them. [ABSTRACT FROM AUTHOR]

Background: The Western Cape Forum for Intellectual Disability took the South African Government to court in 2010 on its failure to implement the right to education for Children with Severe and Profound Intellectual Disability. Subsequently, multidisciplinary teams were appointed by the Western Cape Education Department to deliver services to the Special Care Centres (SCCs). Initially, minimal information was available on this population. Objectives: The purpose is to document the process of developing and validating a database for the collection of routine data. Method: A descriptive analytical study design was used. A sample of convenience was drawn from individuals under the age of 18 years, enrolled in SCCs in the Western Cape. The team who entered and analysed the data reached consensus regarding the utility and feasibility of each item. Results: Data were collected on 134 children. The omission of certain items from the database was identified. Some information was not reliable or readily available. Of the instruments identified to assess function, the classification systems were found to be reliable and useful, as were the performance scales. The WeeFIM, on the other hand, was lengthy and expensive, and was therefore discarded. Discussion and conclusions: A list of items to be included was identified. Apart from an individual profile, it can be useful for service planning and monitoring, if incorporated into the central information system used to monitor the performance of all children. Without such inclusion, this most vulnerable population, despite court ruling, will not have their right to education adequately addressed.

Intensive interaction is a communication technique used with people with autism and/or severe-profound intellectual disability. Practitioners should ensure that the complex health needs of people with severe-profound intellectual disability are met, and that their rights are upheld, by actively listening and responding to unconventional communication. This article reports a review of the literature on using intensive interaction with people with severe-profound intellectual disability. Results show that the technique can help increase people's levels of social engagement and sociability, enhance their sense of well-being, and reduce distress. Although some practitioners can find the technique rewarding, for others it can stimulate feelings of discomfort, therefore the article also considers some barriers to implementation. [ABSTRACT FROM AUTHOR]

Background People with severe and profound intellectual disability typically demonstrate a limited ability to communicate effectively. Most of their communications are non-verbal, often idiosyncratic and ambiguous. This article aims to identify the process that regulates communications of this group of people with others and to describe the methodological approach that was used to achieve this. Materials and Methods In this qualitative study, two dyads consisting of a person with severe or profound intellectual and multiple disability and a teacher or carer were filmed as they engaged in school-based activities. Two 1-hour videotapes were transcribed and analysed using grounded theory. Results Attuning was identified within the theory proposed here as a central process that calibrates and regulates communication. Conclusion Attuning is conceptualized as a bidirectional, dyadic communication process. Understanding this process may support more effective communication between people with severe or profound intellectual and multiple disability and their interaction partners. [ABSTRACT FROM AUTHOR]

Background People with profound intellectual disability experience a high prevalence of visual disability, making them more dependent on sound. However, research addressing the influence of the auditory environment is scarce. Method Observations of the auditory environments (soundscapes) and moods of people with profound intellectual and visual disabilities, in terms of core affect, were conducted in residential facilities by direct support personnel. Appraisals of soundscape and core affect dimensions were combined and analysed by means of multilevel linear regression. Results Findings endorse a positive relationship between the observed pleasantness and eventfulness of soundscapes and core affect of people with profound intellectual and visual disabilities. Conclusion Based on the results of this study we suggest a relationship between soundscapes and moods of people with profound intellectual and visual disabilities, as judged by staff members engaged in their environments. These findings give reason to believe that improved soundscapes could ameliorate the moods of the residents. [ABSTRACT FROM AUTHOR]

Background The importance of a partnership between parents and professionals in the support of children with disabilities is widely acknowledged and is one of the key elements of 'family-centred care'. To what extent family-centred principles are also applied to the support of persons with profound intellectual and multiple disabilities (PIMD) is not yet known. Aim The purpose of this exploratory study was to examine what parents with a child with PIMD find important in the support of their child. In addition, we examined which child or parent characteristics influence these parental opinions. Method In total, 100 parents completed an adapted version of the Measure of Processes of Care. Mean unweighted and weighted scale scores were computed. Non-parametric tests were used to examine differences in ratings due to child (gender, age, type and number of additional disabilities, type of services used and duration of service use) and parent characteristics (gender, involvement with support and educational level). Results Parents rated situations related to ' Respectful and Supportive Care' and ' Enabling and Partnership' with averages of 7.07 and 6.87 respectively on a scale from 1 to 10. They were generally satisfied with the services provided, expressed in a mean score of 6.88 overall. The age of the child significantly affected the scores for ' Providing Specific Information about the Child'. Parents of children in the '6-12 years' age group gave significantly higher scores on this scale than did parents of children in the '≥17 years' age group ( U = 288, r = −0.34). Conclusion This study shows that parents with children with PIMD find family-centred principles in the professional support of their children important. Although the majority of parents are satisfied with the support provided for their children, a substantial minority of the parents indicated that they did not receive the support they find important. [ABSTRACT FROM AUTHOR]