Instructional Content and Self-Determination in Individualized Education Program Annual Goals for Students With Extensive Support Needs.

Under the Individuals With Disabilities Education Act, individualized education program (IEP) annual goals are required to enable students with disabilities to be involved in and make progress in the general education curriculum and to address other educational needs. This study reports findings from a content analysis of the annual goals in 88 IEPs for K-12 students with extensive support needs. Results reflect a lack of comprehensive academic content goals to promote involvement and progress in the general education curriculum, and limited opportunities for students to develop skills associated with self-determination. Findings also show a focus within goals on student compliance rather than the development of meaningful skills and knowledge. Implications for research and practice are provided.

Encouraging death communication in a death-avoidant society: analysis of interviews with death café organizers.

BACKGROUND: Post-war Japanese tend to avoid discussion of death, resulting in a lack of death communication within clinical settings. However, with the aging of society, the significance of conversations and decisions related to end-of-life issues has grown. In 2007, the government established guidelines for decision-making in end-of-life care. Nonetheless, death communication remains a challenge for healthcare professionals in clinical settings. In contrast, death cafés have spontaneously emerged within communities as informal gatherings to openly discuss and explore death. Learning from death café organizers may help healthcare professionals encourage death communication in a death-avoidant society. Therefore, a qualitative study was conducted to describe death cafés by examining the underlying motivation and practices through interviews with death café organizers. METHODS: Individual in-depth interviews were conducted with death café organizers. Two key aspects were explored: 1) the underlying motivations of organizers; and 2) the practices and challenges encountered in running death cafés. The interviews were transcribed verbatim and analyzed using a qualitative descriptive approach. Thematic analysis was used. RESULTS: The study identified two themes representing the underlying motivation of death café organizers: individually-oriented and community-oriented. These themes exhibited contrasting orientations and were collectively termed "individual-community orientation". Regarding the practice of death cafés, the focus was on the "attitude towards having attendees with and without grief in the same session." Participants' attitudes towards this aspect fell into two categories with opposing orientations: "purification" and "inclusion." The "purification-inclusion orientation" was more prevalent among organizers who initiated death cafés due to their personal experiences. A matrix was created to categorize death cafés based on their underlying motivations (individual vs. community-oriented) and practices (purification vs. inclusion). This classification resulted in quadrant 1 (community-oriented, inclusive) and quadrant 3 (individually-oriented, purification). Notably, death cafés in quadrant 1 were often held in temples. CONCLUSIONS: Japanese death cafés can be classified into two categories: individually and purification-oriented and community and inclusive-oriented categories. Healthcare professionals can learn valuable insights from death café organizers, particularly in promoting death communication. Specifically, temple death cafés, with their inclusive practices and orientation towards community, can be particularly beneficial in fostering inclusivity and community engagement.

Caregiving and future planning perspectives of siblings of individuals with intellectual and developmental disabilities: Insights from South Korea, Japan and Taiwan.

BACKGROUND: As individuals with intellectual and developmental disabilities age, their siblings are more likely to assume caregiving responsibilities. However, little is known about experiences of East Asian siblings with respect to their caregiving and future-planning within their own country, as well as other East Asian countries. METHODS: Using a national survey, this study explored experiences of 576 siblings across South Korea, Japan and Taiwan. RESULTS: A common factor across the three countries was that siblings were less engaged in advocacy and future-planning activities and felt less competent to play the role of caregiving. Korean siblings reported more negative views about disability, while Japanese siblings reported less engagement in future-planning and Taiwanese siblings reported greater involvement in caregiving. CONCLUSION: Based on 'universalism without uniformity', it is recommended to develop culturally sensitive sibling-targeted intervention based on each country's context.

An extremely prolonged second stage of labor increases maternal complications but has no adverse effect on neonatal outcomes.

AIM: To investigate how an extremely prolonged second stage of labor of 12 h or more affects maternal and neonatal outcomes. MATERIAL AND METHODS: This retrospective cohort study included nulliparous, pregnant women with 37 + 0 to 41 + 6 weeks of gestation whom vaginal delivery was attempted at the Yokohama City University Medical Center between 2014 and 2018. RESULTS: In 446 cases of the prolonged second stage of labor, there were 296 women (66%) in the 2- to 6-h second stage of labor group, 112 women (25%) in the 6- to 12-h group, and 38 women (8.5%) in the 12-h or longer group. The longer the second stage of labor, the more significant was the increase in the rates of augmentation of the delivery, emergency cesarean delivery, and operative vaginal delivery. Even in the 12 h or longer group, 82% were able to have vaginal delivery. The 6- to 12-h group had a significant increase in third- or fourth-degree perineal lacerations compared to the 2- to 6-h group (aOR 8.12 [95% CI 1.55-42.6]). Clinical chorioamnionitis was significantly increased in the 12 h or longer group (aOR 4.88 [95% CI 1.62-14.8]). In terms of neonatal outcomes, comparison between the three groups showed no significant difference. CONCLUSION: With an extremely prolonged second stage of labor, maternal complications involved a significant increase in severe perineal lacerations and chorioamnionitis; however, there was no increase in adverse outcomes for neonates. It was not possible to conclusively determine if the duration of the second stage is acceptable.

Psychometric Properties of Self-Determination Inventory: Student Report Among Chinese Students With and Without Intellectual and Developmental Disabilities.

This study explores the psychometric properties of Self-Determination Inventory: Student Report (SDI:SR) in students with intellectual and developmental disabilities (IDD) and without disabilities in China. The paper-and-pencil version of SDI:SR Chinese Translation (SDI:SR Chinese) was used to explore self-determination across students with IDD (n = 245) and students without disabilities (n = 315) from 16 schools across six cities in China. We examined the factor structure of the measure, conducted analysis of measurement invariance, and compared the latent means across students with IDD and without disabilities. Findings suggest that the data fit a one-factor model better than a three-factor model. We found greater variability in self-determination among students with IDD than students without disabilities. However, the two groups did not differ in latent means.

Promoting Career Design in Youth and Young Adults with ASD: A Feasibility Study.

Recent calls by transition researchers in postsecondary transition have advocated for new approaches to transition services focused on career design, which uses career-related experiences based on a person's interests to develop goal setting and problem-solving abilities. Youth and young adults with autism spectrum disorder (ASD), who often have limited opportunity for career-related experiences, could benefit from career design intervention. This study examined the feasibility of using the Self-Determined Career Design Model (SDCDM) to enhance transition-related outcomes for twenty-five youth and young adults with ASD. Statistically significant gains were seen in goal attainment and occupational performance. This study provides preliminary evidence that the SDCDM can feasibly enhance outcomes for youth and young adults with ASD.

Impact of Different Pairings of Respondents on Scores on the Supports Intensity Scale-Adult Version (SIS-A).

This secondary analysis examined the impact of respondent-level factors on scores on the Supports Intensity Scale-Adult Version (SIS-A) to determine if there were patterns of differences in SIS-A scores based on the number of respondents and the pairings of respondents that were included in SIS-A interviews. Results indicated that having fewer respondents led to a greater variability in SIS-A scores whereas having more respondents led to higher mean, overall support need scores. When respondents included an adult with intellectual disability (ID) the mean score was significantly lower. However, there were complex influences of pairing an adult with ID with either a professional or family member on SIS-A scores. Implications for administering and using the SIS-A are discussed.

Family Role in the Development of Self-Determination for Youth With Intellectual and Developmental Disabilities: A Scoping Review.

The development of self-determination is promoted by supportive contexts during adolescence; families are a key part of this context. In adolescent populations, research suggests families can support self-determination in a number of ways, yet less is known about how self-determination is promoted within families of youth with intellectual and developmental disabilities (IDD). To address this knowledge gap, we conducted a scoping review to examine the existing evidence pertaining to the role families of youth with IDD play in supporting the development of self-determination. A review of 24 publications revealed that existing research has focused on understanding family perspectives on self-determination, but there is a lack of studies investigating how families provide supports for self-determination in the home context for youth with IDD. Additionally, little intervention work has focused on supporting families to promote self-determination. Based on the findings, implications for future research and practice are provided.

Who Is Leading the Field in 2020?: AAIDD Students and Early Career Professionals.

The American Association on Intellectual and Developmental Disabilities (AAIDD) has been a leader in the field of intellectual and developmental disabilities since its founding in 1876. Today, student and early career professionals make up approximately 8.5% of the organization, with their engagement supported by the Student and Early Career Professional Interest Network (SECP). An article by Havercamp et al. (2003), "Who Will Lead the Field Beyond 2020?", recommended organizational changes that have been largely addressed in the years following by SECP. The present research replicates Havercamp et al.'s (2003) original survey of the organization's student and early career professionals, and results support the effectiveness of SECP as a welcoming platform from which students and early career professionals can establish themselves in the organization.

A scoping review of cross-cultural experiences of siblings of individuals with intellectual and developmental disabilities in the United States.

BACKGROUND: Siblings undergo unique experiences in growing up with brothers and sisters with intellectual and developmental disabilities (IDD). Although sibling relationships or adjustments among individuals with IDD have received greater attention from the disability field, there has been still less attention to how cultural identities (e.g., race, ethnicity) may influence experiences of siblings of individuals with IDD. AIM: This study used scoping review methodology to understand cross-cultural experiences of siblings of individuals with IDD in the United States. METHOD: Eight articles met inclusion criteria, using the PubMed, Web of Knowledge, PsycINFO, and ERIC databases. RESULTS: Studies reported the impact of cultural identities on sibling emotional and behavioral functioning, school functioning, and caregiving responsibilities. CONCLUSIONS: The need for culturally responsive sibling interventions and implications for international contexts is discussed.

Self-Determination Assessment in Adults With and Without Intellectual Disability.

This article analyzes the reliability and factor structure of the Self-Determination Inventory: Adult Report (SDI:AR) in adults with and without intellectual disability. There is a critical need for contemporary assessment tools given the emphasis on self-determination outcomes in disability supports and services. The findings suggest that the same set of items can be used across adults with and without intellectual disability. However, there are significant differences in overall self-determination across adults with and without intellectual disability, with adults with intellectual disability scoring lower on the SDI:AR. Implications for research and practice are discussed.

The Self-Determined Learning Model of Instruction and Students With Extensive Support Needs in Inclusive Settings.

There is a strong link between the development of skills associated with self-determination (i.e., choice-making, decision-making, problem solving, goal setting and attainment, planning, self-management, self-advocacy, self-awareness, and self-knowledge) and positive school (e.g., academic achievement) and postschool (e.g., employment, community access) outcomes. In this article, we advocate for an examination of research related to the impact, usability, and cultural sustainability of an evidence-based intervention intended to enable students to enhance skills associated with self-determination, the Self-Determined Learning Model of Instruction (SDLMI), when used to support students with extensive support needs, including students with intellectual and developmental disability (IDD). Theoretical foundations of the construct of self-determination and its applicability for all people and extant research on implementation of the SDLMI and students with extensive support needs are presented. Implications for researchers are addressed, including the impact, usability, and cultural sustainability of the SDLMI for students with extensive support needs, and the potential of the SDLMI to support all students in inclusive settings when implemented as a universal support.

Examining the Impact of Respondent-Level Factors on Scores on the Supports Intensity Scale - Children's Version.

This secondary analysis examined the impact of respondent-level factors on scores on the Supports Intensity Scale-Children's Version (SIS-C) for children and youth with intellectual disability to determine if there were any significant differences in the SIS-C scores by different respondent pairs when considering children's age, intellectual functioning level, and adaptive behavior level. Results indicated whenever a pair of respondents included a teacher or a paraprofessional, the support needs scores were lower than when the pair included a family member. Moreover, there was a significant interaction effect across respondent pairing, child age, and child intellectual functioning levels as well as across respondent pairing, child age, and child adaptive behavior levels. Implications for administration and use of the SIS-C are provided.

Case of severe bullous erythema including intertrigo-like eruptions with angioedema induced by pegylated liposomal doxorubicin.

Pegylated liposomal doxorubicin (PLD) is an anthracycline anticancer agent used in ovarian cancer and a form of doxorubicin enclosed in pegylated liposomes. There are only a few reports on intertrigo-like eruptions caused by PLD. We describe the first case of severe bullous erythema, including intertrigo-like eruptions with angioedema, induced by PLD in Japan. We present the case of a 53-year-old woman who was diagnosed with stage IIIC ovarian cancer. After receiving three cycles of PLD, the patient developed swelling of the upper lip and painful erythema with blisters and erosions on the axilla, upper back, flank and wrists. The patient was diagnosed with angioedema and severe skin lesions, including intertrigo-like eruptions induced by PLD. Although treatment with oral prednisolone and topical steroids was effective against these eruptions, the administration of PLD was discontinued because of its ineffectiveness against the primary disease. Several risk factors, such as obesity, perspiration and racial differences, may contribute toward a severe manifestation such as that seen in our patient. Moreover, our case was the first accompanied by angioedema. The mechanism of coexistence of intertrigo-like eruptions and angioedema is not clear; further studies are required to clarify the pathological mechanism of intertrigo-like eruptions.

Detecting Changes in Support Needs Over Time.

Assessment of support needs has received significant attention in the disability field, however, little is known about the stability of support needs scores over time. Data from 82 adults with intellectual and developmental disabilities (IDD) who were reassessed with the Supports Intensity Scale-Adult (SIS-A) version as well as the SIS-A Annual Review Protocol (SIS-A ARP) were analyzed. The findings suggest stability of SIS-A scores over a one- to three-year period in adults with IDD. Several sections of the SIS-A ARP showed discriminative power, particularly sections that asked if there had been changes in a subset of specific life activities assessed on the SIS-A and in medical and behavioral needs. Implications for further research and practice are discussed.