Family Stress Associated with Transition to Adulthood of Young People with Severe Disabilities

1992 ◽  
Vol 17 (1) ◽  
pp. 31-39 ◽  
Author(s):  
Elizabeth J. Thorin ◽  
Larry K. Irvin
Keyword(s):  
Young Adults ◽  
Young Adult ◽  
Developmental Disabilities ◽  
Transition To Adulthood ◽  
Service Providers ◽  
Family Stress ◽  
Family Members ◽  
Self Care ◽  
Severe Disabilities ◽  
Severe Developmental Disabilities

The transitions from student to adult roles for adolescents and young adults with severe developmental disabilities can produce concern and stress for their families. In order to understand and ultimately to be able to address these transition-related concerns and needs of families, we assessed family members' concerns associated with transition, identified the family members who shared the concerns, and measured the related levels of stressfulness and frequency of occurrence of the concerns. We collected data from 42 members of 19 families of young adults with severe developmental disabilities. Results were as follows. The most frequently mentioned concerns were those from the Young Adult domain, such as getting along with others, self-care capabilities, responsible behavior, and sexuality. The concerns rated most stressful, however, were from the Residential, Family Life, and Professionals and Agencies domains. These included the quality and availability of services, dealing with service providers, and family financial problems and disagreements. The concerns reported to occur most frequently were from the Young Adult, Residential, and School domains, including the young adult's self-care and social capabilities, the quality of residential services and interactions with residential providers, and school academic and work training and interactions with school staff. Concerns from the Residential domain were most predictive of overall individual and family stress. Our results indicated that responses from family members regarding stressful concerns are contingent upon how questions about stress are framed. We discuss these results in terms of Lazarus and Folkman's (1984) stress and coping theory.

scholarly journals An Assessment of the Feasibility and Effectiveness of Distance Learning for Students With Severe Developmental Disabilities and High Behavioral Needs

2021 ◽  
Author(s):  
Melaura Andree Erickson Tomaino ◽  
Alissa L. Greenberg ◽  
Sarah Ann Kagawa-Purohit ◽  
Sagui A. Doering ◽  
Edward Steven Miguel
Keyword(s):  
Distance Learning ◽  
Developmental Disabilities ◽  
Severe Disabilities ◽  
Technology Study ◽  
Educational Benefits ◽  
Additional Information ◽  
Behavioral Needs ◽  
Severe Developmental Disabilities ◽  
Learning Programs ◽  
Students With Severe Disabilities

AbstractSchools across the country closed their doors during the COVID-19 pandemic. These measures impacted all students, as schools, educators, and families grappled with the realities of transitioning to distance-learning platforms. The research on distance learning is still in its early phases. However, almost no research exists on educating students with severe disabilities and high behavioral needs using this technology. Study 1 collected survey data from students’ families and their educators on the feasibility and effectiveness of distance-learning programs when working with students with severe developmental disabilities and high behavioral needs. Results indicated that parents and educators had generally neutral attitudes toward distance learning, although educators agreed that their students were obtaining educational benefits during distance learning. Study 2 further examined the effects of a transition to distance learning on students’ Individualized Education Plan (IEP) goal progress. Analyses revealed that students maintained about half of the skills addressed in their IEPs and made progress on an additional quarter of their IEP goals. Findings contribute to a much-needed literature base on distance learning and provide additional information as to the feasibility and effectiveness of distance learning with students with severe developmental disabilities and high behavioral needs. Future work is needed to determine best practices for distance learning with this population.

Stay or Leave?

2019 ◽  
pp. 173-202
Author(s):  
Isabelle Frechon ◽  
Lucy Marquette
Keyword(s):  
Young Adults ◽  
Child Welfare ◽  
Young Adult ◽  
Medical Treatment ◽  
Transition To Adulthood ◽  
Young Person ◽  
Continue Medical ◽  
Extended Care ◽  
Opt Out ◽  
Fiscal Restraint

This chapter reports on results of a study conducted with 1,622 young adults between the ages of 17 and 20, comparing the profiles of youth who either opt out or do not have access to extended services beyond the age of 18 to those who benefit from these services. Young adult protection in France, also known as Young Adult Contract, is a welfare contract between a young adult and a Child Welfare Officer that “commits” the young person to either continue their education or actively seek a job and accommodations, continue medical treatment, update administrative documentation, and learn to manage a budget. Opportunities and the limitations of extended care contracts are reviewed and the perverse effects of this measure are reviewed in a context of fiscal restraint when youth have difficulties acquiring vital skills essential for a successful transition to adulthood.

Shifting Roles in Families of Deferred Action for Childhood Arrivals (DACA) Recipients and Implications for the Transition to Adulthood

2020 ◽  
pp. 0192513X2096797
Author(s):  
Elizabeth Aranda ◽  
Elizabeth Vaquera ◽  
Heide Castañeda
Keyword(s):  
Young Adults ◽  
Young Adult ◽  
Transition To Adulthood ◽  
Family Systems Theory ◽  
Undocumented Immigrant ◽  
Roles And Responsibilities ◽  
Deferred Action ◽  
Mixed Status Families ◽  
Mixed Status ◽  
Depth Interviews

The 2012 Deferred Action for Childhood Arrivals (DACA) program enabled undocumented immigrant young adults to more freely participate in U.S. society. Guided by family systems theory, which emphasizes that individual actors are interdependent with others within family units, we analyze the experiences of young adult DACA recipients while members of their families remain deportable. We draw from 44 in-depth interviews with DACA recipients who are part of mixed-status families to answer three questions: How were the benefits of DACA distributed within mixed-status family units and discrepancies interpreted by recipients? How did obtaining DACA change recipients’ roles and responsibilities within their families? And to what extent did obtaining DACA shape young adults’ envisioned futures? We discuss potential results of the program, including changes in familial relationships, conflicting roles, and challenges in recipients’ efforts at individuation from their families.

Strategies to Promote the Inclusion of Young Adults With Developmental Disabilities in Community-Based Health Studies

2018 ◽  
Vol 29 (7) ◽  
pp. 958-971 ◽  
Author(s):  
Luz Maria Vazquez ◽  
Nazilla Khanlou ◽  
Deborah Davidson ◽  
Fatma Aidarus
Keyword(s):  
Young Adults ◽  
Developmental Disabilities ◽  
Service Providers ◽  
Community Based ◽  
Advisory Committees ◽  
Community Based Research ◽  
Underlying Principle ◽  
Health Studies ◽  
Children And Young Adults ◽  
Adults With Developmental Disabilities

We discuss strategies to promote the inclusion of people with developmental disabilities (DDs) in qualitative community-based research studies. Strategies were applied in three projects conducted between 2012 and 2017 that addressed issues of socioeconomic challenges, discrimination, and exclusion of children and young adults with developmental disabilities (YADD). Strategies included partnership with community organizations; inclusion of YADD, family caregivers (FCs), and service providers in advisory committees (ACs); and strategies to accommodate YADD. As part of our contribution, we discuss issues of invisibility and exclusion of individuals with DDs who have “low” functioning capacities. There is a need to review studies sampling inclusion criteria as they may constitute a barrier for participation. Preference for sampling “high” functioning individuals may reinforce exclusion in research, and replicate broader patterns of socioeconomic exclusion of individuals with disabilities. Our discussion of inclusive research is informed by critical disability studies and the underlying principle “nothing about us without us.”

scholarly journals Embedding a user-centred approach in the development of complex behaviour change intervention to improve outcomes for young adults living with type 1 diabetes: The D1 Now Study

2018 ◽  
Vol 1 ◽  
pp. 8 ◽  
Author(s):  
Deirdre M.J. Walsh ◽  
Lisa Hynes ◽  
Mary Clare O'Hara ◽  
Jenny Mc Sharry ◽  
Séan F. Dinneen ◽  
...  
Keyword(s):  
Systematic Review ◽  
Type 1 Diabetes ◽  
Young Adults ◽  
Young Adult ◽  
Service Providers ◽  
Phase 1 ◽  
Self Management ◽  
Theoretical Frameworks ◽  
Complex Behaviour

Background: Type 1 diabetes (T1D) is an auto-immune condition which requires intensive self-management. Diabetes self-management is challenging, especially during young adulthood. Effective interventions to improve outcomes for young adults (18-30 year olds) with T1D are needed. This paper describes the development of the D1 Now intervention, employing a user-centred approach to engage with stakeholders in parallel with the application of theory. Methods: Intervention development consisted of 4 phases: 1) the formation of a public and patient involvement (PPI) Young Adult Panel (YAP); 2) a systematic review to synthesise evidence regarding the effectiveness of interventions aimed at improving outcomes for young adults with T1D; 3) understand young adults’ diabetes self-management behaviour through engagement with key stakeholders; and 4) an expert consensus meeting to discuss self-management strategies identified in Phase 1 and 3 that would form the core components of the D1 Now intervention. Results: The YAP resulted in meaningful involvement between young adults, researchers and service providers. The systematic review highlighted a lack of quality intervention studies. Qualitative findings highlighted how young adult self-management is driven by complex interactions between external resources, which influence capability, and motivation. The expert panel in Phase 4 highlighted focus areas to improve outcomes for young adults and implementation strategies. Subsequent to these 4 phases, 3 intervention components have been identified: 1) a key worker to liaise with the young adult; 2) an online portal to facilitate relationship building between staff and young adults; and 3) an agenda setting tool to facilitate joint decision-making. Conclusions: This study described the systematic development of an intervention underpinned by theoretical frameworks and PPI, and has identified components for the D1 Now intervention. The resulting intervention content will now be subject to an intervention optimisation process.

scholarly journals An Assessment of the Feasibility and Effectiveness of Distance Learning for Students with Severe Developmental Disabilities and High Behavioral Needs

2020 ◽  
Author(s):  
Melaura Andree Erickson Tomaino ◽  
Alissa L. Greenberg ◽  
Sarah Kagawa ◽  
Sagui A. Doering ◽  
Edward Steven Miguel
Keyword(s):  
Distance Learning ◽  
Developmental Disabilities ◽  
Severe Disabilities ◽  
Technology Study ◽  
Behavioral Needs ◽  
Severe Developmental Disabilities ◽  
Learning Programs ◽  
Learning Platforms ◽  
Significant Regression ◽  
Students With Severe Disabilities

Abstract School across the country closed their doors during the COVID-19 pandemic. These measures impacted all students, as schools, educators, and families grappled with the realities of transitioning to distance learning platforms. The research on distance learning is still in its early phases. However, almost no research exists on educating students with severe disabilities and high behavioral needs using this technology. Study 1 collected survey data from students’ families and their teachers on the feasibility and effectiveness of distance learning programs when working with students with severe developmental disabilities and high behavioral needs. Results indicated that parents and educators alike reported that distance learning was beneficial for most students but that in person education is more effective with this population. Study 2 further examined the effects of a transition to distance learning on students’ IEP goal progress. Analyses revealed that, overall, students maintained skills addressed in their IEP (i.e., no significant regression or progress). Findings contribute to a much needed literature base suggesting that while distance learning is better than no education, in person instruction is more effective and preferred for most students with severe developmental disabilities and high behavioral needs.

scholarly journals My Baby Bird - Living With Type 1 Diabetes: A Phenomenological Analysis

2012 ◽  
Vol 3 (4) ◽  
pp. 239-246
Author(s):  
Catherine Aquino-Russell ◽  
Roger Russell ◽  
Allison Russell ◽  
Catrina Russell
Keyword(s):  
Type 1 Diabetes ◽  
Young Adults ◽  
Young Adult ◽  
Lived Experience ◽  
Phenomenological Study ◽  
Family Members ◽  
Phenomenological Analysis ◽  
Adult Member ◽  
Canadian Diabetes Association

“This is a life-changing experience for all of us. You have one child with diabetes and your whole family has diabetes” (Isenberger, 2009, p. 134). More than two million Canadians have diabetes; 10% live with type 1 diabetes, involving the pancreas not being able to produce insulin (Canadian Diabetes Association, 2009). The incidence of type 1 diabetes is greater than has previously been described (Karvonen et al, 2000). One longitudinal phenomenological study used interviews for data collection to uncover family members’ lived experiences when their children (aged 9-14) were diagnosed with type 1 diabetes (Wennick & Hallstrom, 2006, 2007; Wennick, Lundqvist, & Hallström, 2009). Interestingly, Balfe (2009) wrote, “young adults with type 1 diabetes are a “forgotten group” (p. 128). The purpose of our ongoing phenomenological research is to explore the experiences of young adults and their family members. We are having challenges recruiting potential participants (individuals and their family members) to write about and email their experiences living with or having a young adult member who lives with type 1 diabetes; however, we have one description of a lived experience written by a young adult which is so eloquent, that we wanted to share it with others. We have completed a Giorgi (2009; Giorgi & Giorgi, 2003) descriptive phenomenological analysis guided by the humanbecoming theory for nurses (Parse, 1998) and have related the findings to the literature. This paper includes a moving metaphorical illustration about what it is like for one young adult to live with type 1 diabetes. 

A Case Study on Vocal Loudness With a Young Adult With Autism Spectrum Disorder and Developmental Delay

2015 ◽  
Vol 24 (4) ◽  
pp. 587-593
Author(s):  
Amanda Pack ◽  
Paola Colozzo ◽  
B. May Bernhardt ◽  
Bosko Radanov ◽  
Riley Rosebush ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Young Adults ◽  
Young Adult ◽  
Developmental Disabilities ◽  
Developmental Delay ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Language And Literacy ◽  
The Individual

Purpose This clinical focus article describes an exploratory case study addressing reduction of vocal loudness in a young adult with a history of autism spectrum disorder and developmental delay. The need for a short-term pullout individual intervention arose from his participation in the Advancing Language and Literacy group, a program that provides support for enhancement of speech, language, and literacy skills for young adults with developmental disabilities. Method The participant attended individual treatment sessions weekly for 9 sessions, all of which were digitally audio-recorded. Client awareness of different loudness levels was first established using nonspeech sounds and speech samples. Loudness in spontaneous speech was monitored with support of verbal and visual feedback in the individual sessions and tracked in individual sessions as well as sessions of the Advancing Language and Literacy group, which served as a generalization context. Results In the individual sessions, the participant's spontaneous production of acceptable volume improved from 42% to 92% of utterances. Observation of group participation indicated generalization, with the majority of utterances produced posttreatment at an acceptable volume. Conclusions This clinical focus article emphasizes suprasegmental aspects as a dimension of communicative competence and highlights the need for continued intervention research and services for young adults with developmental disabilities.

Transition to Adulthood as a Joint Parent-Youth Project for Young Persons With Intellectual and Developmental Disabilities

2018 ◽  
Vol 56 (4) ◽  
pp. 263-277 ◽  
Author(s):  
Sheila K. Marshall ◽  
Tim Stainton ◽  
Jessie M. Wall ◽  
Ma Zhu ◽  
John Murray ◽  
...  
Keyword(s):  
Young Adults ◽  
Developmental Disabilities ◽  
Transition To Adulthood ◽  
Parental Knowledge ◽  
Western Canada ◽  
Intellectual And Developmental Disabilities ◽  
Joint Project ◽  
Project Method ◽  
Recall Data ◽  
Action Project

Abstract Eight dyads (N = 16) residing in Western Canada participated in this investigation of how young adults with intellectual and developmental disabilities (IDD) and their parents jointly construct, articulate, and act on goals pertinent to the young adults' transition to adulthood. Using the action-project method to collect and analyze conversations and video recall data, cases were grouped representing the ways goal-directed projects brought relationship (n = 4), planning (n = 3) or both (n = 1) to the foreground as joint projects. Resources internal to the dyad such as emotional resources, and external to the dyad, facilitated formulation and pursuit of projects. Lack of external supports and limited parental knowledge about IDD hindered joint project formulation.

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