Aims: The aims of this thesis were twofold. First, to review the literature on parental locus of control and its role in psychological outcomes for parents who have a child with an intellectual disability (ID). Second, a research study aimed to explore levels of parental subjective wellbeing in a specific group of these parents: those who have a child with profound and multiple intellectual disabilities (PMID). More specifically, whether two different types of parental cognition, parental locus of control and recognition of positive gains of having a child with PMID, were predictive of parental subjective wellbeing. Method: A systematic review of the literature was conducted to address the first aim. For the research study, a single sample of parents and family caregivers (n=101) completed three quantitative self-report questionnaires as part of a within-participant, cross-sectional survey design. These included the Positive Gain Scale, a modified version of the Parental Locus of Control Scale, and the Warwick-Edinburgh Mental Wellbeing Scale . Results: The systematic review highlighted the influence of parental locus of control and other parental cognitions on parent and family psychological outcomes. The research study revealed that parental subjective wellbeing in this group of parents (N= 101) was lower than in the general population. Multiple regression analysis revealed that parental locus of control significantly predicted parental subjective wellbeing (β= -.279, t(2,99)= 9.419, p= .005), accounting for around 8% of the variance in WEMWBS scores, R2= .081, F(2,99)= 5.474, p= .006. Conclusions and implications: Although the systematic review and the research study highlighted the importance of parental locus of control for parents of children with ID, the results of the study suggest that other factors are also involved in influencing subjective wellbeing of parents of children with PMID. They also indicate a potential role for psychological intervention for parents and families with a focus on adjusting beliefs and expectations and promoting an internal parental locus of control. However, further research exploring the emotions and experiences of this group of parents is needed.

abstract: The population of intellectually gifted youth encompasses a wide range of abilities, talents, temperaments, and personality characteristics. Although generalizations are often made outside of the empirical literature regarding the interpersonal skills of these children, much remains to be understood about their social behavior. The aim of this study was to examine the within-group differences of gifted children, and it was hypothesized that subgroups of the gifted population would differ from each other in terms of interpersonal skill development. Gifted education teachers within a large K-12 public school district in the Southwestern United States completed the Devereux Student Strengths Assessment (DESSA) regarding the social-emotional competence of 206 elementary and middle school students classified as gifted. Correlational analyses and factorial analysis of variance were conducted to compare interpersonal skills (as measured by DESSA ratings) and students' level of giftedness, area of identification as gifted, gender, and age. Results indicated that interpersonal skills were significantly related to gender, area of identification, and level of giftedness. Female children were described as having significantly higher levels of interpersonal skills overall, and children identified as gifted with both nonverbal and quantitative measures exhibited significantly higher levels of interpersonal skills than those identified with verbal or nonverbal measures alone. Significant correlations were also observed between the level of children's estimated gifted abilities and their interpersonal skills. Trends in the data suggested that as children's cognitive abilities increased, their interpersonal skills also increased, placing profoundly gifted children at social advantages over their moderately gifted peers. However, it was also noted that although the two variables were significantly related, they were not commensurate. While children presented with above-average cognitive abilities, their interpersonal skills were within the average range. This suggests that gifted children may benefit from interventions that target interpersonal skill development, in an effort to bring their social skills more in line with their cognitive abilities. / Dissertation/Thesis / Ph.D. Educational Psychology 2012

Background: The Routes for Learning (RfL) assessment is intended to enable accurate assessment of the cognitive and communication skills of pupils with profound and multiple learning difficulties (PMLD). A literature search revealed that there is little published research regarding the implementation or effectiveness of RfL. This study aimed to begin to address this lack of research by investigating some of the ways in which the RfL materials are used in practice, why they have been used in these ways and how this relates to the RfL guidance. Participants: Two special school settings were identified while working for an Educational Psychology Service. For each setting a practitioner using RfL and a staff member with leadership responsibility for assessment/RfL was identified. Methods: A multiple embedded case study was conducted in two special school settings in a North West local authority. A running record was kept of observations made of school staff using RfL in practice. Semi-structured interviews were conducted with practitioners using RfL and staff members with leadership responsibility for RfL. All interviewees also completed a background questionnaire to provide context for the research and to support data from interviews. Interviews were recorded and transcribed. An examination of the RfL materials and resources was undertaken. Analysis/Findings: All interview data were analysed using thematic analysis and the findings presented as thematic maps. Conclusion/Implications: This study found that RfL is being used in different ways in special schools and identified a number of issues which relate to its use and implementation.

Behavioral researchers have investigated procedures for identifying preferred items for individuals with varying levels of developmental disabilities. Some researchers in this area have reported difficulties in identifying preferred items for individuals with severe to profound multiple disabilities (SPMD), in part because the individuals may not possess the motor skills needed to select and manipulate the items included within the assessment. The purpose of the current study was to address three research questions: Would differences in preference patterns be observed if individuals with SPMD could activate toys with a motor response that is within their repertoire (i.e., press a large microswitch to activate the toy) versus when they are required to perform a motor response that may not be within their repertoire (e.g., sliding knobs, twisting dials to activate a toy)? Would teaching specific skills to activate a toy result in increased toy engagement and a shift in preference toward directly operating the toy? Would teaching the participant a motor response to activate the toy directly affect the levels of microswitch engagement observed? Data were collected within a combination multiple baseline (across 2 participants) and multielement (across conditions) design. The results of this study showed that (a) differences in preference were observed when different measures of assessing preferences were conducted, (b) acquisition of specific motor skills resulted in an increase in preference toward directly manipulating items, and (c) acquisition of motor skills also resulted in a decrease in activating items via microswitches. These results extend the preference assessment literature by showing that the motor skills present within an individual's current repertoire may affect the results of preference assessments for individuals with SPMD.

Syftet var att förbättra omhändertagandet av palliativa patienter i det sena skedet av palliativ vård på ett akutsjukhus med fokus på smärtskattning/registrering, antal brytpunktssamtal, efterlevandesamtal och användandet av det Svenska palliativregistret. Förbättringsarbetet kopplades till en studie vars syfte var att undersöka medarbetarnas erfarenheter av att arbeta med stöd av en palliativ omvårdnadskonsult.   Nolans förbättringsmodell har använts och genom PDSA har förbättringsidéer testats. Själva kontexten har beskrivits genom 5P. Styrdiagram (p- diagram) har använts för att analysera variationen i data.  Kvalitativa semistrukturerade intervjuer med 10 medarbetare för att fånga deras erfarenheter har analyserats med innehållsanalys.   Efter genomfört förbättringsarbete framkom att andel smärtskattade patienter var 89 % och antalet journalanteckningar avseende smärta ökade med 21 %. Andelen brytpunktsamtal har ökat och fler närstående erbjuds efterlevandesamtal. Vid intervjuer framkom att både patient och de närstående var nöjda med den vård de fått på avdelningarna.   Fyra teman innehållande 12 kategorier framkom i intervjuerna. Medarbetarna var generellt mycket positiva till införandet av en palliativ omvårdnadskonsult som stöd.  Det framkom också behov av kontinuerlig utbildning och vikten av samarbete och kommunikation inom teamen.   Det visade sig att PDSA cykler och styrdiagram var värdefulla metoder för uppföljning av förbättringsarbete på akutsjukhus. / The aim was to improve late stage palliative care in an acute hospital setting concerning pain assessment and management, documented decision to shift to end-of-life care, follow-up talk and compliance to the Swedish palliative registry. The improvement work was further studied by exploring the staff’s experience of working with support from a palliative consultancy nurse.    Nolan's improvement model was used including 5 P, PDSA cycles and control charts such as P-charts to analyze the variation. Qualitative semi-structured interviews with 10 employees regarding their experiences, have been analyzed with content analysis.    The results show that more patients were assessed for pain, 89% and charted medical records entries increased by 21 %. The percentage of documented decision to shift to end-of-life care increased and more relatives are offered follow-up talk and patient and relatives were satisfied.   Four themes including 12 categories emerged in the interviews. The staff were generally very positive to the consultancy nurse as a support. Results showed a need for continuous education and the importance of collaboration and communication within the teams.   PDSA cycles and control charts proved to be valuable methods for improvement work in an acute hospital setting.

No description available.

The aim of this study is to describe interaction between mothers/ caregivers and their profoundly mentally retarded and multiply handicapped children, and to describe the function of play in communicative interaction. In the study I describe the communicative interaction of six children aged 1:3 to 10 years. The children have been studied in their homes and preschools or schools. Each child had five or six handicaps in addition to their profound retardation. The study is based on interviews with parents, information from naturally-occurring conversations and videoobservations. Meals and play were selected for video-recording. The results indicate that the most important function of play is as a means of communication and learning. Play most often involves sensory stimulation and body play. Communicative interaction is non-verbal and described in terms of gaze/eye contact, facial expressions, gestures and body movements. A pattern of interaction has been found. This consists of four phases: an impression-receiving phase with orientation, an expressive phase with motor activity, a pause with processing and preparation of an answer and finally a break or a limited reaction. These children have, however, a communicative competence. The ability of the mothers to interpret the children’s signals is extremely context-dependent. These mothers adjust their communicative behaviour to the child and facilitate the child’s communicative interaction. The ability of the mothers/ caregivers to interpret the signals of these children is often underestimated by professionals. The living conditions of the parents have emerged as an important factor for play, communication and the development of the child.

To achieve the United Nations Sustainable Development Goal 11.7 aiming to create inclusiveand accessible greenspaces, there is need to involve children with profound intellectual andmultiple disabilities in research and planning practices. The aim of this study is to explore whatexperiences of accessibility children with profound intellectual and multiple disabilities haveof greenspace. Through the qualitative method of go along interviews using augmentative andalternative communication, such as pictures and sign language, children provide their opinionsabout the public park Långbroparken in southern Stockholm, Sweden. Their experiences areanalysed through the framework of environmental justice, exploring fair distribution,recognition, capabilities and functioning. The findings demonstrate that children with profoundintellectual and multiple disabilities can indeed be included in research practices throughadapted interview situations. Either the researcher needs to be skilled and experienced inalternative and augmentative communication, and preferably have previous relations with thechildren, or be able to cooperate with someone who has such abilities and connections.Individual experiences of physical and social accessibility in the park create feelings of bothoutsideness and immersing oneself into nature and highlight the interaction of person andenvironment. In conclusion, children with profound intellectual and multiple disabilities holdvaluable explanations and experiences of what constitutes inclusive and accessible greenspacesand their perspectives are required to fulfil targets such as the United Nations SustainableDevelopment Goal 11.7.

A multi component training package (live training, video modeling, role playing, and feedback) was used to train teachers to assess and instruct students with profound multiple disabilities. Phase 1 of the study included training seven in-service teachers to conduct assessment in three areas: (a) preference assessment (i.e., potential reinforcing items), (b) controlled body movement assessment (i.e., gross and fin motor skills), and (c) access skill assessment (i.e., assessment of basic skills or prerequisite skills that are necessary for student to master before entering into further instruction). The assessment result yielded the following information for each student participant: (a) a list of three to four preferred items, (b) a list of body movements in which the study reliably uses to respond, and (c) a list of access skills that are mastered and not mastered. Four teacher/student pairs from Phase 1 participated in Phase 2, which consisted of using the multi component training package (same components as Phase 1) to train teachers to instruct students on non mastered access skills. Teachers were trained to use one of the following instructional strategies to teach non mastered access skills: least-to-most prompting, most-to-least prompting, time delay, or graduate guidance. A multiple baseline design across four teacher participants was used to determine if the instructional training was effective in increasing the percentage of correctly implemented instructional steps. Data from Phase 1 suggested that the multi component training package was effective in increasing teachers' skills in assessing students with profound multiple disabilities, as the percentage of correctly implemented assessment steps increased for all seven teacher participants from pre training to post training. Additionally, data from Phase 2 indicated that the training was effective in increasing the percentage of correctly implemented instructional steps from baseline to post training sessions, across multiple access skills. Data from student participants showed that overall, students were responsive to teachers' instruction, as the percentage of independently performed student responses also increased from baseline to post training sessions.

Children with intellectual disabilities (ID) in inclusive classrooms differ in ways of processing information and learning speed compared to their peers without disabilities. Therefore teaching methods must be adapted to their individual needs. Peer support is seen as an additional form of improving students’ academic engagement. This systematic review focuses on peer supported interventions which facilitate academic engagement of children and youth with mild to profound ID. It contains six studies, which met pre-determined inclusion criteria focusing specifically on academic engagement. The studies were analysed to examine (a) different types of peer support, (b) peer support characteristics, (c) definition of academic engagement of students with ID and (d) if a change in academic engagement as an outcome can be evaluated after a peer support intervention. In this review, the data of 18 students with mild to profound ID and their peers in the age of 8 to 17 years, were included. Four different types of peer support intervention were identified, which included different characteristics mostly focussing on supporting students’ communication, access to information and active participation in class. The different definitions of academic engagement which were found hindered comparison of results. Nevertheless, all studies had a positive effect on the academic engagement of students with ID. Future research is needed to investigate the long-term impact of different types of peer support on academic engagement of students with ID and their need in relation to specific forms of ID.