Health and disability care providers' experiences and perspectives on end-of-life care needs of individuals with long-standing physical disability: A qualitative interview study.

BACKGROUND: Little is known about the specific needs and experiences of individuals with long-standing physical disability at end of life. AIM: To explore health and disability care providers perspectives and experiences in relation to end-of-life care needs of individuals with long-standing physical disability. DESIGN: Qualitative study using reflexive thematic analysis. SETTING/PARTICIPANTS: Semi-structured interviews were conducted with nine health and disability care providers from two Australian states. RESULTS: Five themes were constructed from the data: (1) The significance of place. All participants described how the end-of-life care experience was significantly impacted by the place in which dying occurred. (2) Knowing the person and their needs. Knowledge and familiarity with the individual with long-standing disability were seen as invaluable in terms of providing continued high-quality care. (3) Navigating a new care landscape. For disability support workers, struggling to adapt from providing disability support to end-of-life care was difficult. (4) Complexities of family involvement. Past experiences of families within the healthcare system had resultant impacts on care received by the individual with long-standing disability. (5) Being prepared. Participants felt more was needed in terms of end-of-life planning and discussions around end of life for this cohort. CONCLUSIONS: This research highlights a significant lack of continuity of care and problems at the intersection of the disability and health systems when providing end-of-life care for this cohort. Suggested areas for improvement include team approaches to enable continuity of care and dying in place, and a need for knowledge and skills in this area for all stakeholders.

The application of the family of participation-related constructs (fPRC) framework to AAC intervention outcomes in children with complex communication needs: a scoping review.

Participation is a fundamental human right, and being able to communicate is an essential component of participation in various life situations, such as at school, with peers, and in the community. Augmentative and alternative communication (AAC) interventions aim to facilitate communication and social interaction, independence, and participation in all aspects of life. The purpose of this study was to summarize and map the AAC intervention outcomes for children with complex communication needs onto the Family of Participation-Related Constructs (fPRC) framework. The scoping review identified 270 studies for inclusion, and the data gathered was extracted and mapped onto the fPRC framework. The results indicate that although many studies have reported on participation-related constructs such as activity competence and context, there is still insufficient focus on attendance and involvement, sense of self, and environment constructs. Hence, future research in the field of AAC is needed on the various constructs of participation proposed by the fPRC framework.

Where to next? Experiences of adults with intellectual disability after they complete a university program.

BACKGROUND: Adults with intellectual disability who attended higher education programs have reported increasing self-determination, developing social skills and forming relationships. However, there is limited evidence about what adults with intellectual disability do after they complete such programs. This study investigated the experiences of adults with intellectual disability after they completed an inclusive higher education university program in Australia. MATERIALS & METHODS: This qualitative study used a phenomenological approach. Semi-structured interviews were conducted with adults with intellectual disability who had completed the program (N = 6). Data were thematically analysed and interpreted using Bronfenbrenner's ecological systems theory. RESULTS: Participants developed lasting connections with mentors and staff but not with peers. Some participants accessed more opportunities, returned to study, increased topic-specific knowledge, and developed life skills; however, others faced challenges with transition from the program. DISCUSSION: Findings highlight a need to explore ways to enhance the transition from the program to the wider university environment and/or employment. Suggestions for practice are provided to help inform future development of inclusive higher education programs for adults with intellectual disability. CONCLUSION: With appropriate support adults with intellectual disability can experience positive post-university outcomes and opportunities; however, limited social interaction with informal supports such as peers, challenges the inclusive model.

Facilitators and barriers to developing romantic and sexual relationships: lived experiences of people with complex communication needs.

The aims of this study were to investigate the lived experiences of people with complex communication needs in developing romantic and sexual relationships, and identify and explore barriers and facilitators they encountered in pursuing these relationships. For the study, nine participants were interviewed. All were at least 21-years-old, used augmentative and alternative communication, and had physical and communication disabilities since childhood. A methodology employing critical hermeneutics, a form of interpretive phenomenology, and Feminist Standpoint Theory was utilized. The World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) model (2013) was used to develop questions for the semi-structured interviews. Interview data were analyzed using reflexive thematic analysis, with the ICF model and the concept of ableism used to identify four main themes: (a) Attitudes of others (ableism), (b) Communication Within Intimate Moments, (c) Assistance of Support Workers, and (d) Additional Education Related to Sexuality and Disability. Most of the barriers participants encountered related to ableist attitudes they experienced from others. Facilitators included creative communication strategies for intimate moments and using dating websites. The participants' experiences bring attention to the need for changes in policies, practice, and research to further support people with complex communication needs in their quest to develop intimate relationships.

Designing augmentative and alternative communication systems with Aboriginal Australians: vocabulary representation, layout, and access.

Yolŋu (Aboriginal Australians of northeast Arnhem Land) are interested in developing augmentative and alternative communication (AAC) systems in their own languages to support communication opportunities and participation for their family members living with Machado-Joseph disease. Designing AAC systems in Aboriginal languages requires consideration of unique linguistic and cultural elements. Participatory action research in strength-based communication contexts was carried out by Yolŋu and Balanda (the Yolŋu word for non-Aboriginal people) researchers working together through a collaborative intercultural process. Culturally responsive literacy, language, and AAC activities were used to develop four prototype Yolŋu AAC sytems for Yolŋu with varied literacy skills. Data were coded using gerunds to identify and focus on action in the data. Reflective and analytical collaborative, oral group discussions were used to identify key considerations and, ultimately, a Yolŋu metaphor for the research. Yolŋu language, culture and worldview impacted all aspects of prototype design and decision making. Salient considerations related to representation, organization, layout, and access, are presented. Clinical implications and future research considerations are outlined.

Augmentative and alternative communication for Aboriginal Australians: Developing core vocabulary for Yolŋu speakers.

Yolŋu, Aboriginal people from Arnhem Land, Australia are at risk of Machado-Joseph disease, with progressive loss of speech. Yolŋu are interested in developing augmentative and alternative communication (AAC) systems in their own languages. This research aimed to develop a culturally responsive process to explore and create a core vocabulary word list for Yolŋu adults living with the disease for inclusion in AAC system prototypes. A list of 243 Yolŋu words and morphemes was created. In this highly collaborative, mixed methods, participatory action research, Balanda (the Yolŋu word for non-Aboriginal people) and Yolŋu researchers conducted cycles of transcription and analysis of a language sample, with oral group discussions to identify which words to include, omit, or add, based on Yolŋu perceptions of the structure and use of their languages. A Yolŋu metaphor, Gulaka-buma ("Harvesting yams"), was identified by Yolŋu researchers to represent and share the research process and findings. Three key themes were identified that summarize the main cultural and linguistic considerations related to changes made to the core vocabulary. Study findings emphasized the role of language as an expression of culture and identity for Indigenous peoples and the importance of considering cultural and linguistic factors in selecting vocabulary for AAC systems.

Mental health matters: a pilot study exploring the experiences and perspectives of individuals with complex communication needs.

Mental health and wellbeing are foundational in human interaction and life satisfaction. Persons with complex communication needs are at risk of reduced mental health and wellbeing. The aim of this project was to identify the facilitators and barriers that individuals with complex communication needs experience when attending to their mental health and wellbeing. A qualitative study design using a phenomenological approach was utilized. Data was collected through in-depth interviews with three participants with complex communication needs, observation, and reflexive journaling. An inductive process of cross-case thematic analysis identified common barriers and facilitators experienced by the participants when addressing mental health and wellbeing. The opportunity barriers described in Beukelman and Mirenda's  Participation Model were applied to classify the assistive and obstructive roles of communication partners. Barriers and facilitators to obtaining assistance for mental health and wellbeing related predominantly to communication partners' skills, attitudes, and support practices. The findings highlight a need to equip individuals with complex communication needs, carers, support workers, and mental health professionals with the knowledge, skills, and attitudes to promote mental health and wellbeing among this population.

Inclusive university experience in Australia: Perspectives of students with intellectual disability and their mentors.

Inclusive post-secondary education (PSE) delivers positive personal, social and academic outcomes. However, there is limited support for students with intellectual disability (ID) to participate in higher education, particularly in Australia. This study investigated the expectations and experiences of students with ID in an inclusive individual support PSE programme. Semi-structured interviews were conducted with students (n = 4) and peer mentors (n = 6) at the beginning and end of one academic semester. Participants were asked about inclusive practices, goal attainment, mentoring experiences and skill development. Thematic analysis was used to analyse data. Four major themes and several subthemes were identified: self-determination (e.g. self-confidence), social development (e.g. social networks), intellectual development (e.g. subject knowledge) and inclusive practices. The results emphasized the value of inclusive PSE for students with ID. Recommendations regarding future practices of inclusive PSE for people with ID are provided.

Exploring participation experiences of youth who use AAC in social media settings: impact of an e-mentoring intervention.

The contribution of cross-age peer e-mentoring on reported experiences of participation during online conversations using social media was explored in this pre-experimental study. Young people (n = 4, aged 13; 4-18;3 [years; months]) who used augmentative and alternative communication (AAC) participated in an e-mentoring intervention. Two mentors who also used AAC had regular conversations with the participants via Facebook 1 , email, or Skype 2 . It was predicted that the mentoring support would contribute to experiences of participation in online conversations outside of the e-mentoring intervention. Reported experiences of participation in online conversations with communication partners other than the mentor were measured at four time points. The Self-Reported Experiences of Activity Settings was used for this purpose because it consists of five domains: Personal Growth, Psychological Engagement, Social Belonging, Meaningful Interactions, and Choice and Control. These domains are associated with the construct of involvement in activity settings. Results showed varied scores between participants and across the domains. Reported experiences of choice and control increased slightly across time. Despite some variation in self-ratings, the participants reported experiencing choice and control, psychological engagement, and social belonging in online conversations. There is need for more research in this emerging area.

Clinician modifiable factors associated with better quality of life in children with acquired brain injury undergoing rehabilitation.

OBJECTIVES: To identify clinician-modifiable factors related to quality of life (QOL) in children with acquired brain injury (ABI). PARTICIPANTS AND METHODS: Thirty-nine children attending an ABI rehabilitation program (5-18 years) were assessed using the Personality Inventory for Children-2, Vineland Adaptive Behavior Scale-2, Handicap-Related Problems for Parents Inventory and Children's Assessment of Participation and Enjoyment. The Pediatric Quality of Life Inventory was completed by children and parents six months later. RESULTS: Children with lower levels of internalising and externalising behaviours, health and social skill problems, and higher family functioning had significantly higher levels of total QOL (child and parent rated) (r = -.47 to -.79). In addition, children with higher levels of adaptive behaviour had significantly higher parent rated total QOL (r = .46). Measures of mother's stressors had moderate but not statistically significant relationships with the child's total QOL (r = -.31 to -.35). There were moderate and statistically significant relationships between measures of participation in physical activities and total QOL as rated by children (r = .42-.48) but not parents (r = .11-.30). CONCLUSIONS: These findings suggest potential targets to be investigated in future clinical research in rehabilitation following ABI in children to optimise QOL.

Effectiveness of video-based modelling to facilitate conversational turn taking of adolescents with autism spectrum disorder who use AAC.

This study evaluated and compared the effectiveness of packaged video modelling (VM) and video self-modelling (VSM) interventions to develop conversational behaviors with four adolescents with autism spectrum disorder (ASD) who used augmentative and alternative communication (AAC). The study was conducted using an alternating treatments design nested within a multiple baseline design. The intervention effect was measured using Robust-Improvement Rate Difference (R-IRD). The results demonstrated that, overall, video-based modelling used in conjunction with a system of least prompts was effective in promoting conversation skills in adolescents with ASD who used AAC. Without the systematic instruction, R-IRD indicated that these techniques yielded only small to moderate intervention effects. The findings demonstrated the necessity of systematic instruction for this group of participants. This investigation provides preliminary evidence to support the use of packaged video-based modelling interventions to develop conversation skills in adolescents with ASD who use AAC systems.

Exploring validation of a graphic symbol questionnaire to measure participation experiences of youth in activity settings.

Participation has a subjective and private dimension, and so it is important to hear directly from youth about their experiences in various activity settings, the places where they "do things" and interact with others. To meet this need, our team developed the Self-Reported Experiences of Activity Settings (SEAS) measure, which demonstrated good-to-excellent measurement properties. To address the needs of youth who could benefit from graphic symbol support, the SEAS-PCSTM, 1 was created. The purpose of this paper is to describe the development of SEAS-PCS and the preliminary study that explores the equivalency of the SEAS and SEAS-PCS. The SEAS and SEAS-PCS were compared in terms of the equivalency of meaning of stimulus items by 11 professionals and five adults who used augmentative and alternative communication, were familiar with PCS, and were fluent readers. Out of 22 items, 68% were rated as highly similar on a 5-point scale (M = 4.14; SD = .70; mdn = 4; range: 2.81-5.00). Subsequently, the 32% of the SEAS-PCS items that were rated below 4 were modified based on the participants' specific comments. Further work is required to validate the SEAS-PCS. The next step could involve exploring the views of youth who use AAC.

Improving communication access in psychoeducational interventions for people with complex communication needs: a scoping review and stakeholder consultation.

PURPOSE: Psychoeducational interventions are commonly used to improve mental health among the general population; however, their application among people with complex communication needs is under explored. This scoping review aims to identify the psychoeducational interventions utilised with people with complex communication needs, any adaptations to improve communication access, and outcomes for this population. MATERIALS AND METHODS: The scoping review was conducted using the Arksey and O'Malley guidelines and included stakeholder consultations. A systematic search of the literature was conducted. Stakeholder consultations were conducted via semi-structured interviews with informants from three populations: people with complex communication needs, everyday communication partners and mental health workers. RESULTS: The search yielded 2112 articles. Twenty-four articles were retained for data extraction. Numerical analysis provided an overview of the existing literature. Thematic analysis highlighted the range of communication access strategies applied within psychoeducational interventions. Common aims and outcomes of interventions occurred across three interrelated themes: education, symptom reduction, and improved coping and wellbeing. Stakeholder consultations enabled contextualisation of literature. CONCLUSIONS: People with complex communication needs may benefit from psychoeducational interventions when effective, personalised communication access strategies are employed. Future research should include lived-experience perspectives to ensure the relevance of communication access strategies in mental health support.Implications for rehabilitationThis scoping review adds to the evidence base supporting equitable access to mental health support for people with complex communication needs.A range of specific strategies are presented for mental health workers to consider when working with people with complex communication needs.Positive behaviour support (PBS) practitioners must be equipped to address the psychoeducational and mental health support requirements of people with complex communication needs.

"You got an instant conversation": Goal progress and perceptions following an e-mentoring social media intervention for young people who use augmentative and alternative communication.

INTRODUCTION: Persons with communication disability are at increased risk of social isolation due to multiple societal barriers. Young people with communication disability are not using social media to the same extent as the general population, limiting their access to social networks. The aim of this research was to investigate an e-mentoring intervention to progress the goal attainment of online conversation for young people who use augmentative and alternative communication (AAC). METHODS: Using a mixed-methods design, four participants between 13 and 18 years of age who used AAC participated in a 4-month cross-age peer e-mentoring intervention. Mentoring was provided by adults who were considered cross-age peers as they also used AAC. The Canadian Occupational Performance Measure (COPM) and Goal Attainment Scaling (GAS) tools were used to measure progress in individually developed goals for online conversation. Interviews with participants, their parents, and their mentors were conducted to describe their experiences of the intervention. RESULTS: Changes in participants' COPM ratings of performance and satisfaction with performance following intervention were statistically significant (p = 0.001, p = 0.032 respectively) and on average participant goals were attained at the expected level on the goal attainment scale (T = 63.97). However, goal attainment varied when considering specific goals. Variability in goal progress was described by participants alongside a range of barriers and facilitators. Mentees, their parents, and their mentors perceived that the intervention enabled goal progress and described improvements in social media use that extended beyond the targeted goals. CONCLUSIONS: Outcomes from the COPM and GAS demonstrate the value of cross-age peer e-mentoring to support young people who use AAC to participate in online conversation. Benefits of the intervention were commonly perceived by mentees, their parents, and mentors to extend beyond the specific goal attainments.

School participation and social networks of children with complex communication needs, physical disabilities, and typically developing peers.

The aim of the study was to describe and compare the school participation and social networks of children with physical disabilities and complex communication needs (Group CCN), children with physical disabilities only (Group PD), and children with typical development (Group TD). The 39 participants, 10-15 years of age, were observed for 4 hours at school. School staff and the parent and/or child provided information on children's social networks. A striking observation was that, while participants in Group TD continuously conversed and socialized with peers inside and outside classrooms; those in Group CCN rarely used aided AAC, were provided with limited communication opportunities at school, and had fewer acquaintances and friends. Findings warrant intervention at the participation level at school and in the community.

Developing Augmentative and Alternative Communication Systems in Languages Other Than English: A Scoping Review.

INTRODUCTION: Access to augmentative and alternative communication (AAC) systems in languages other than English and multilingual AAC systems remains limited for many people with complex communication needs, despite a growing interest in this field, and an acknowledged need for culturally responsive AAC practice. PURPOSE: The purpose of this scoping review was to identify published research that has reported on the development of components or whole AAC systems in languages other than English, and the linguistic and cultural factors that influenced research methods and AAC system development. METHOD: Nine databases were systematically searched for published research that presented development of components or whole AAC systems in languages other than English. The Mixed Methods Appraisal Tool was used to assess the quality of studies. Charted data from studies included journal and publication date, research team, language of AAC system, aims of the study, study methodologies, study participants, and type of AAC systems developed. An analytical framework was developed to identify the cultural and linguistic factors that influenced research methods and or AAC system outcomes. RESULTS: A total of 22 studies were included (13 qualitative, one quantitative nonrandomized, six quantitative descriptive, and two mixed-methods studies). Overall quality of studies was high. Some qualitative studies were of lower quality due to limited analysis or interpretation of results. Linguistic factors were extensively reported in the existing literature, whereas cultural factors were rarely explicitly reported. CONCLUSION: Factors contributing to lack of reporting of cultural considerations are posited with suggestions for future research. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.21482607.

Time demands of caring for children with cerebral palsy: what are the implications for maternal mental health?

AIM: To examine the relationship between maternal mental health problems and the time required by mothers to care for children with cerebral palsy (CP). METHOD: Cross-sectional study of 158 mothers of children with cerebral palsy (98 males, 60 females; mean age 11y 3mo, range 6-17y). Gross Motor Function Classification System levels of the children were 37% level I, 20% level II, 9% level III, 12% level IV, and 22% level V. Manual Ability Classification System levels were 19% level I, 27% level II, 22% level III, 13% level IV, and 19% level V. Maternal mental health problems were assessed using the General Health Questionnaire. Depressive symptoms were assessed using the Center for Epidemiological Studies Depression Scale. A time-diary was used to measure caregiving time. Experience of time pressure was assessed using the Time Crunch Scale. RESULTS: On average, mothers spent 6.0 hours per 24 hours on weekdays and 8.3 hours per 24 hours on weekends caring for children with CP. There was a significant positive relationship between maternal psychological problems and both caregiving time required per 24 hours (p = 0.03) and mothers' experience of time pressure (p < 0.001). There was also a significant positive association between maternal depressive symptoms and experience of time pressure (p = 0.003). INTERPRETATION: It is important to support mothers to find ways of reducing the real and perceived impact of caregiving. This might include identifying sources of 'respite' support for caregivers, training in stress and time management, and appropriate treatment of mental health problems.

Participation and social networks of school-age children with complex communication needs: a descriptive study.

Social participation becomes particularly important in middle childhood, as it contributes towards the acquisition and development of critical life skills such as developing friendships and a sense of belonging. However, only limited literature is available on the impact of communication difficulties on social participation in middle childhood. This study compared the participation patterns of school-age children with and without physical disabilities and complex communication needs in extracurricular activities. Participants included five children between 6-9 years of age with moderate-severe physical disability and complex communication needs, and five matched peers. Findings showed that children with physical disability and complex communication needs engaged in activities with reduced variety, lower frequency, fewer partners and in limited venues, but reported higher levels of enjoyment and preference for activity participation, than their matched peers. These children also had fewer same-aged friends, but more paid workers in their social circle. This small-scale descriptive study provides some preliminary evidence about the impact of severe communication difficulties on participation and socialization.

Yolŋu with Machado-Joseph disease: Exploring communication strengths and needs.

Purpose: Yolŋu are Aboriginal Australians from northeast Arnhem Land in the Northern Territory (NT). Machado-Joseph disease (MJD) prevalence in the NT Aboriginal population is the highest in the world. Yolŋu living with progressive dysarthria associated with MJD could benefit from augmentative and alternative communication (AAC). However, there are no aided AAC systems in Yolŋu languages. This research aimed to explore the views of Yolŋu with MJD about communication, speech-language pathology (SLP) services and AAC.Method: A collaborative, culturally responsive research design was informed by Indigenist Research methodology and Constructivist Grounded Theory. Yolŋu with MJD (n = 10) and their interested family members (n = 4) participated in interviews and created visual representations of their social networks. Data were analysed through an oral interpretive process with Yolŋu researchers.Result: A Yolŋu metaphor, Goŋdhu "Building understanding by hand", emerged as a culturally meaningful way to represent the core understandings required for speech-language pathologists (SLPs) to work effectively with Yolŋu with MJD. Elements of this metaphor include seeking to understand the complex lived experiences of Yolŋu with MJD, and working with families to explore the potential benefits of SLP services and AAC.Conclusion: Yolŋu with MJD and their families want to work collaboratively with SLPs to develop bilingual AAC systems and culturally responsive SLP services that build on strengths of Yolŋu culture and kinship to improve communication opportunities and participation.

"I like talking to people on the computer": Outcomes of a home-based intervention to develop social media skills in youth with disabilities living in rural communities.

PURPOSE: To investigate the effectiveness of a home-based social media use intervention to enhance the social networks of rural youth with disabilities. METHOD: Participants were nine youth (mean age = 17.0 years) with disabilities from two rural Australian communities. The intervention consisted of providing appropriate assistive technology and social media training on individualised goals. Using mixed methods, quantitative (a single group pre-post) and qualitative (interviews with participants and their carers) measures were used to examine outcomes of training, individual experiences of the intervention, and changes to online social networks. RESULTS: Participants increased their performance and satisfaction with performance on social media problem areas post-intervention; paired t-tests showed statistical significance at p < .001. There was also a significant increase in the number of online communication partners; Wilcoxon Signed Ranks showed statistical significance at p < .05. The interviews highlighted increased social participation, independence and improvements to literacy. Ongoing parental concerns regarding cyber safety and inappropriate online content were noted. CONCLUSIONS: The findings suggest that social media training is a feasible method for increasing social networks among rural-based youth with disabilities. To sustain ongoing benefits, parents need knowledge and training in integrating assistive technology and social media.