The Impact of Human Service Provider Quality on the Personal Outcomes of People With Intellectual and Developmental Disabilities

BackgroundQuality of life is multidimensional—influenced by individual, organizational, and environmental factors. As such, when examining personal outcomes, it is also important to consider meso and macro factors that contribute to people with intellectual and developmental disabilities' (IDD's) quality of life. While it is widely acknowledged that organizational factors contribute to people's quality of life, there is less research directly examining how the quality of human service providers contributes to people with IDD's personal outcomes. For these reasons, the aim of this study was to explore the relationship between provider quality and people with IDD's personal quality of life outcomes.MethodsUsing a multilevel linear regression we analyzed secondary Personal Outcome Measures® (personal outcomes) and Basic Assurances® (provider quality) data from 2,900 people with IDD served by 331 human service providers.ResultsPeople with IDD's personal outcomes, regardless of their support needs or other demographics, were significantly impacted by the quality of the human service providers they received services from—the higher the quality of the provider, the more personal outcomes they had present. In addition, the following demographic covariates were correlated with personal outcomes: gender; race; complex support needs; residence type; and organizations that offered therapy services.DiscussionWhile quality improvement initiatives may require a great deal of cost and time commitment from providers, our findings suggest the effort translates to improved personal outcomes among people with IDD. The ultimate goal of service providers should be improvement of quality of life among those they support.

Investigating the Use of Head Mounted Devices for Remote Cooperation and Guidance during the Treatment of Wounds

Professional caregivers often face complex situations in which they need the support of a colleague or a specialist. This is especially necessary for caregivers during their training or with less practice in certain tasks. Due to time and space restrictions, colleagues or specialists are not always available for local support. Remote support by streaming videos to a remote helper has been discussed in healthcare domains as a so-called teleconsultation. However, little is known about how to apply teleconsultation in care. We conducted a study with caregivers and remote helpers to compare head mounted devices (HMDs) for teleconsultation in care to two alternative solutions using smartphones. We found that despite lacking familiarity, HMDs have good potential for remote support in care, and that creating video streams with smartphones is not preferable for teleconsultations. We suggest that ideal support needs to balance freedom and guidance and suggest how such support needs to be further explored.

Growing up with a Chronically Ill Family Member—The Impact on and Support Needs of Young Adult Carers: A Scoping Review

This scoping review provides an overview of the impact of growing up with a chronically ill family member on young adults (18–25 years old), and their specific needs. Young adults represent an important life stage involving a transition to adulthood, during which individuals’ family situations can affect their future. We searched relevant studies following the guideline of Arskey and O’Mailley’s methodological framework and the PRISMA statement guidelines for scoping reviews in PubMed, PsychInfo and reference lists to identify articles for inclusion. Studies from 2005 to 2020 were included in this review. Of the 12 studies, six qualitative studies, five quantitative studies and one mixed method study were included. Eight studies discussed the impact, including consequences at a physical and mental level, at their personal development and future perspectives, but also positive effects, such as being capable of organizing their lives. Four studies discussed the needs of young adult carers, including emotional needs, support needs with regard to stimulating autonomy (arising from internal conflicts) and developing their own identity, and the concerned attitude of involved professionals. An unambiguous definition of the target group and further well-designed research are needed to improve clarity about the role of support, so that future professionals can adequately address the needs and wishes of young adults who grow up with an ill family member.

Teaching about volcanoes: Practices, perceptions, and implications for professional development

Volcanology education is important for the development of geoscientists and scientifically literate citizens. We surveyed 55 volcanology instructors to determine their learning and teaching practices, perceptions of academic development, and educational support needs. Instructors reported using a wide range of practices and tools, but lectures, field experiences, maps, rock samples, academic literature, and inherited teaching materials are the most common. Instructors valued educational support from others (e.g., talking with colleagues and students, consulting with learning and teaching specialists) over conducting their own investigations. However, they did not report engaging in as many of these activities as they valued. Instructors requested more support in resource sharing and collation, conference workshops, and co-creation of resources and educational research. We suggest that instructors and academic development staff work together to share and build knowledge in the learning and teaching of volcanology in higher education, and to improve student learning outcomes.

Whose responsibility? Part 2 of 2: views of patients, families, and clinicians about responsibilities for addressing the needs of persons with mental health problems in Chennai, India and Montreal, Canada

Background Individuals with mental health problems have many insufficiently met support needs. Across sociocultural contexts, various parties (e.g., governments, families, persons with mental health problems) assume responsibility for meeting these needs. However, key stakeholders' opinions of the relative responsibilities of these parties for meeting support needs remain largely unexplored. This is a critical knowledge gap, as these perceptions may influence policy and caregiving decisions. Methods Patients with first-episode psychosis (n = 250), their family members (n = 228), and clinicians (n = 50) at two early intervention services in Chennai, India and Montreal, Canada were asked how much responsibility they thought the government versus persons with mental health problems; the government versus families; and families versus persons with mental health problems should bear for meeting seven support needs of persons with mental health problems (e.g., housing; help covering costs of substance use treatment; etc.). Two-way analyses of variance were conducted to examine differences in ratings of responsibility between sites (Chennai, Montreal); raters (patients, families, clinicians); and support needs. Results Across sites and raters, governments were held most responsible for meeting each support need and all needs together. Montreal raters assigned more responsibility to the government than did Chennai raters. Compared to those in Montreal, Chennai raters assigned more responsibility to families versus persons with mental health problems, except for the costs of substance use treatment. Family raters across sites assigned more responsibility to governments than did patient raters, and more responsibility to families versus persons with mental health problems than did patient and clinician raters. At both sites, governments were assigned less responsibility for addressing housing- and school/work reintegration-related needs compared to other needs. In Chennai, the government was seen as most responsible for stigma reduction and least for covering substance use services. Conclusions All stakeholders thought that governments should have substantial responsibility for meeting the needs of individuals with mental health problems, reinforcing calls for greater government investment in mental healthcare across contexts. The greater perceived responsibility of the government in Montreal and of families in Chennai may both reflect and influence differences in cultural norms and healthcare systems in India and Canada.

Exploring the Experiences of Parents Whose Child has Received a Diagnosis of Autistic Spectrum Disorder in Adulthood

There is a growing trend of adult diagnosis of Autism Spectrum Disorder (ASD). Research has found that diagnosis can prompt a process of sense-making which may be disrupted by lack of post-diagnostic support. Given the continued involvement of many parents in supporting their adult son or daughter with ASD, it is vital to understand their experiences to meet their needs in adapting to the diagnosis. Eleven parents of recently diagnosed adults participated in semi-structured interviews which were analysed thematically. Findings demonstrate that the new knowledge of diagnosis facilitates changes in attributions, interactions and relationships, but can result in unmet emotional and relational support needs. Findings are relevant to those involved in adult diagnosis, and the provision of post-diagnostic support.

loopUI-0.1: uncertainty indicators to support needs and practices in 3D geological modelling uncertainty quantification

To support the needs of practitioners regarding 3D geological modelling and uncertainty quantification in the field, in particular from the mining industry, we propose a Python package called loopUI-0.1 that provides a set of local and global indicators to measure uncertainty and features dissimilarities among an ensemble of voxet models. Results are presented of a survey launched among practitioners in the mineral industry, enquiring about their modelling and uncertainty quantification practice and needs. It reveals that practitioners acknowledge the importance of uncertainty quantification even if they do not perform it. Four main factors preventing practitioners to perform uncertainty quantification were identified: lack of data uncertainty quantification, (computing) time requirement to generate one model, poor tracking of assumptions and interpretations, relative complexity of uncertainty quantification. The paper reviews and proposes solutions to alleviate these issues. Elements of an answer to these problems are already provided in the special issue hosting this paper and more are expected to come.

Support needs of Dutch young adult childhood cancer survivors

Background Studies about support needs of young adult childhood cancer survivors (YACCS) previously focused mainly on information needs. This study assessed support needs and associated factors (sociodemographic, medical, and psychosocial functioning) in Dutch YACCS. Methods YACCS (aged 18–30, diagnosed ≤ 18 years, time since diagnosis ≥ 5 years) cross-sectionally filled out a questionnaire regarding their need for various types of support (concrete information, personal counseling, and peer contact) in eight domains (physical consequences of childhood cancer, social-emotional consequences, relationships and sexuality, fertility, lifestyle, school and work, future perspective, insurance and mortgage), and questionnaires assessing health-related quality of life (PedsQL-YA), anxiety and depression (HADS), and fatigue (CIS-20R). Descriptive statistics were used to describe support needs. Linear regression was used to identify characteristics associated with support needs. Results One hundred fifty-one YACCS participated (response = 40%). Most YACCS reported a need for support in one or more domains (88.0%, N = 133). More than half of the participants reported a need for concrete information in the domains lifestyle, fertility, and physical consequences of childhood cancer and 25–50% in the domains insurance and mortgages, future perspective, and social-emotional consequences of childhood cancer. In the domains lifestyle and physical as well as emotional consequences of childhood cancer, 25–50% reported a need for counseling. Overall need for support was positively associated with middle (β = 0.26, p = 0.024) and high (β = 0.35, p = 0.014) compared to low educational attainment and (sub)clinical anxiety (β = 0.22, p = 0.017), and negatively associated with social functioning (β = − 0.37, p = 0.002) in multivariate analyses. Conclusion YACCS report the strongest need for support, for concrete information, in the domains lifestyle, fertility, and physical consequences of childhood cancer. Associated factors were mostly socioeconomic and psychosocial in nature. Psychosocial care should be an integral part of survivorship care for YACCS, with screening for psychosocial problems, information provision including associated emotional consequences and support if necessary (psycho-education) and tailored interventions, and adequate referrals to more specialized care if necessary.

Assistive Technology Interventions and Equity Within Literacy Instruction

This study examines ways to provide assistive technology interventions within literacy courses for adolescents and young adults with disabilities. Instead of separating students from their peers during reading and writing assignments, literacy teachers who implement assistive technology can support equitable access to school curricula and technology-based learning resources. Unresolved questions about teacher training and accessibility led to the problem statement: What technology resources have special education service providers found useful during literacy instruction for students with support needs? Research reporting findings from intervention studies and/or interviews with educators showed differences between activity systems in secondary and post-secondary environments. Teachers' beliefs and expectations about student characteristics and the need for individual assistance could contribute to inequities in access to literacy instruction. The thematic analysis revealed practices within literacy classes that can decrease or maintain inequities for students with support needs.

From Close Connections to Feeling Misunderstood: How Parents of Children with Autism Spectrum Disorder Perceive Support from Family Members and Friends

This qualitative study examines the social support of parents of children with ASD living in Québec, Canada. Eighteen parents described their social support experiences before and after their child’s first signs of ASD. The results of this study indicate that parents recall many unhelpful support experiences after their child’s first signs of ASD. The results also suggest that the parents’ support needs greatly outweigh the support they perceive from family and friends. To our knowledge, this study is the first to recognise that receiving adequate social support requires significant involvement from parents who find themselves having to compensate for the lack of knowledge about autism in the general population. The results of this study put forth the active role that parents play in the reshaping of their support relationships and highlight the changes that occur in these relationships over time. Implications for practice and future research are discussed.