<p>In this thesis four empirical studies dealt with children with profound multiple disabilities and their parents with regard to: (a) how parents perceived interaction with their children (b) how observed child/parent interaction was linked to behavior style of the children as perceived by the parents (c) how parents of children with profound multiple disabilities perceived child/parent interaction and behavior style of their children in comparison to parents to children without disabilities matched for communicative ability and age respectively, and, (d) how social networks and family accommodations were linked to child/parent interaction and child behavior style over time for these families according to parental appraisals. The results in study I showed that child/parent interaction occurred through out the day and constituted of mutual experience and joy. There were two processes in interaction: monitoring interaction and successful interaction. Study II found hypo- and hyper dominated behaviour style of the children to influence interaction differently. The parents were found to be experts on their children in monitoring interaction to achieve more frequent periods of successful interaction. Study III found few differences in wishes about ideal interaction between parents of children with profound multiple disabilities and parents of typically developing children. Study IV showed that the children were communicative dependent on their parents; there were few complete overlaps between the children’s and the family’s social networks; and although family accommodations were child-driven, sustainability of family life evolved around other factors. There was a “contradiction” in results for the whole thesis: child/parent interaction occurred through out ordinary everyday life and constituted of mutual experience and joy versus the children’s communicative dependency and the distance found between social networks of families and children and child/parent interaction.</p>

In this thesis four empirical studies dealt with children with profound multiple disabilities and their parents with regard to: (a) how parents perceived interaction with their children (b) how observed child/parent interaction was linked to behavior style of the children as perceived by the parents (c) how parents of children with profound multiple disabilities perceived child/parent interaction and behavior style of their children in comparison to parents to children without disabilities matched for communicative ability and age respectively, and, (d) how social networks and family accommodations were linked to child/parent interaction and child behavior style over time for these families according to parental appraisals. The results in study I showed that child/parent interaction occurred through out the day and constituted of mutual experience and joy. There were two processes in interaction: monitoring interaction and successful interaction. Study II found hypo- and hyper dominated behaviour style of the children to influence interaction differently. The parents were found to be experts on their children in monitoring interaction to achieve more frequent periods of successful interaction. Study III found few differences in wishes about ideal interaction between parents of children with profound multiple disabilities and parents of typically developing children. Study IV showed that the children were communicative dependent on their parents; there were few complete overlaps between the children’s and the family’s social networks; and although family accommodations were child-driven, sustainability of family life evolved around other factors. There was a “contradiction” in results for the whole thesis: child/parent interaction occurred through out ordinary everyday life and constituted of mutual experience and joy versus the children’s communicative dependency and the distance found between social networks of families and children and child/parent interaction.

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.

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.

Parenting plays an important role in many adult lives. Parenting a child with profound multiple disabilities results in a distinct parenting experience. This qualitative phenomenological study examined the role of social media in the lives of parents raising children with profound multiple disabilities. Five parents raising children with profound multiple disabilities were interviewed, and resulting themes were identified. Consistent with previous research, parents described the initial adaptation to their child’s disability-related needs as the most challenging period of their parenting to date. Adaptation was followed by an acclimation to a new normal of their parenting experience. Parents described moving from medical crises, feelings of isolation, and unfamiliarity with resource systems to becoming empowered through interactions with other parents raising children with profound multiple disabilities, both in-person and through social media. Parents focused on three areas with their social media efforts: their own social needs, their child’s social needs, and their child’s disability-related needs. To address disability-related needs, parents used a social media bricolage approach to create a composite of social media group memberships that reflected their child’s complex medical, disability and intervention profiles. Parents described social media use as daily and essential to their functioning both personally and within their parenting. However, parents prioritized in-person social connections and utilized social media to make and maintain relationships both online and in-person. Parents expressed awareness and deliberate use of privacy settings in using social media. Parents described common pitfalls to social media use and described engaging in disability awareness through social media. Parents described social media as providing a sense of community through which they became empowered in their parenting. They also networked through in-person and virtual social interactions. Social media provided these parents with a networked community empowerment experience as they parented their child with profound multiple disabilities.