scholarly journals Doing Nothing: Adults With Disabilities With No Daily Activities and Their Siblings

2012 ◽  
Vol 117 (1) ◽  
pp. 67-79 ◽  
Author(s):  
Julie Lounds Taylor ◽  
Robert M Hodapp
Keyword(s):  
Depressive Symptoms ◽  
Developmental Disabilities ◽  
Sibling Relationships ◽  
Service System ◽  
Well Being ◽  
Sibling Relationship ◽  
Daily Activities ◽  
Intellectual And Developmental Disabilities ◽  
Web Based ◽  
Formal Service

Abstract A significant concern of parents and professionals is that adults with intellectual and developmental disabilities will go without regular educational–vocational activities. The authors examined predictors of such inactivity in individuals with intellectual and developmental disabilities, as well as how inactivity related to their sibling's well-being and the sibling relationship. Participants included 796 siblings of adults with intellectual and developmental disabilities who responded to a web-based survey. Nearly 13% of adults with intellectual and developmental disabilities were without daytime activities; these adults had more emotional–behavioral and health problems, were more underserved by the formal service system, and had parents who were less able to provide care. Although siblings of adults without activities reported more depressive symptoms, worse health, and less close sibling relationships, inactivity no longer predicted these problems after controlling for characteristics that predisposed adults with intellectual and developmental disabilities to have no activities.

Self-Reported Guilt Among Adult Siblings of People With Intellectual and Developmental Disabilities

2019 ◽  
Vol 124 (5) ◽  
pp. 470-477
Author(s):  
Carolyn M. Shivers
Keyword(s):  
Depressive Symptoms ◽  
Developmental Disabilities ◽  
Behavioral Problems ◽  
Sibling Relationships ◽  
Well Being ◽  
Intellectual And Developmental Disabilities ◽  
Adult Health ◽  
Adult Siblings ◽  
Emotional Needs ◽  
Adult Sibling

Abstract As more siblings become responsible for their aging brothers and sisters with intellectual and developmental disabilities, it becomes increasingly important to understand these siblings' emotional needs, including potential negative emotions such as guilt. This study examined the presence and correlates of self-reported guilt among 1,021 adult siblings of people with intellectual and developmental disabilities. Respondents completed the Adult Sibling Questionnaire, a national survey examining characteristics of adult health, depression, and feelings of guilt. Over 50% of siblings reported feeling increased guilt. Siblings who experienced increased guilt (versus those who did not) experienced less close sibling relationships, more depressive symptoms, and lower levels of well-being. Siblings experiencing more guilt also had brothers/sisters with more severe emotional/behavioral problems.

Trauma-informed care in the context of intellectual and developmental disability services: Perceptions of service providers

2020 ◽  
pp. 174462952091808
Author(s):  
Amanda J Rich ◽  
Nikki DiGregorio ◽  
Carla Strassle
Keyword(s):  
Developmental Disabilities ◽  
Service Providers ◽  
Well Being ◽  
Service Organizations ◽  
Intellectual And Developmental Disabilities ◽  
Mental Health Providers ◽  
Health Providers ◽  
Trauma Informed Care ◽  
High Staff Turnover ◽  
Trauma Informed

Traumatic life events have pervasive impacts on health and well-being. A growing body of literature shows that people with intellectual and developmental disabilities are disproportionately impacted by trauma. Trauma-informed care (TIC) is a philosophy of service provision that is committed to preventing traumatization and re-traumatization and promoting healing. This study explores the perceptions of 130 leaders in the field of intellectual and developmental disabilities services on the adoption and practice of TIC through the analysis of quantitative data. Results indicated a disconnect between the level of TIC integration and perceptions detailing how well organizations are currently performing in aspects of TIC. Barriers to TIC included high staff turnover, lack of accessible mental health providers, lack of affordable training, stigma, and restrictive funding structures. Implications and recommendations for service organizations and educators are provided.

Family Caregivers of Adults With Intellectual and Developmental Disabilities: Outcomes Associated With U.S. Services and Supports

2014 ◽  
Vol 52 (2) ◽  
pp. 147-159 ◽  
Author(s):  
Heather J. Williamson ◽  
Elizabeth A. Perkins
Keyword(s):  
Developmental Disabilities ◽  
Family Caregivers ◽  
Service System ◽  
Care Delivery ◽  
Intellectual And Developmental Disabilities ◽  
Physical Health Outcomes ◽  
Services And Supports ◽  
Caregiving Roles ◽  
Mental And Physical Health ◽  
The U.S

Abstract Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver outcomes and their association with existing services and supports for family caregivers of adults with IDD. Twenty-four articles were compiled using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. Studies report economic, mental, and physical health outcomes from caregiving roles. The need for comprehensive caregiver assessment is discussed. Understanding and responding to the changing needs of family caregivers is vital to the U.S. disability service system to effectively prioritize formal resources and services.

A Comparative Analysis of Adult Siblings' Perceptions Toward Caregiving

2015 ◽  
Vol 53 (2) ◽  
pp. 143-157 ◽  
Author(s):  
Meghan M. Burke ◽  
Thomas Fish ◽  
Kathy Lawton
Keyword(s):  
Comparative Analysis ◽  
Developmental Disabilities ◽  
Focus Groups ◽  
Service System ◽  
Intellectual And Developmental Disabilities ◽  
Adult Siblings ◽  
The Future ◽  
Brothers And Sisters

Abstract Siblings of individuals with intellectual and developmental disabilities (IDD) are likely to become caregivers for their brothers and sisters. The expectations of and experiences with caregiving, however, may be different. In this study, using focus groups, we compared the perspectives of siblings who were current caregivers (n  =  25) to siblings who anticipated being caregivers (n  =  17). Responses were compared and contrasted across four areas: caregiving responsibilities, rewards, challenges, and opinions toward being paid as a caregiver. Both caregiver groups were knowledgeable about and invested in their brothers and sisters. Also, they both reported that they enjoyed bonding with their brothers and sisters. Challenges, for current caregivers, related to understanding and navigating the service system. In contrast, anticipated caregivers were concerned about planning for the future. Mixed viewpoints were expressed about receiving pay for providing care although a greater number of current caregivers were receptive to it as a means to supporting their own families.

The Perceptions of Professionals Toward Siblings of Individuals With Intellectual and Developmental Disabilities

2017 ◽  
Vol 55 (2) ◽  
pp. 72-83 ◽  
Author(s):  
Meghan M. Burke ◽  
Chung eun Lee ◽  
Catherine K. Arnold ◽  
Aleksa Owen
Keyword(s):  
Developmental Disabilities ◽  
Service Delivery ◽  
Delivery System ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Service Delivery System ◽  
Web Based ◽  
Research And Practice ◽  
Positive Experiences ◽  
Sibling Involvement

Abstract Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals. To date, though, it is unclear how professionals encourage sibling involvement and, accordingly, the facilitators and challenges in working with siblings. For this study, 290 professionals participated in a national web-based survey; participants answered three open-ended questions about ways to involve siblings, positive experiences with siblings, and challenges in working with siblings. Professionals reported person-level and systems-level supports to encourage sibling involvement. Also, professionals reported enjoying working with cohesive families of individuals with IDD and witnessing the benefits that siblings bring to their brothers and sisters with IDD. Challenges in working with siblings included: lack of sibling involvement, systemic barriers, and caregiving burden. Implications for future research and practice are discussed.

scholarly journals Older Adults’ Experiences in an Online Intervention for Managing Subjective Depressive Symptoms

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 861-861
Author(s):  
Janella Hudson ◽  
Rachel Ungar ◽  
Laurie Albright ◽  
Rifky Tkatch ◽  
James Schaeffer ◽  
...  
Keyword(s):  
Older Adults ◽  
Depressive Symptoms ◽  
Qualitative Content Analysis ◽  
Well Being ◽  
Late Life Depression ◽  
Structured Interviews ◽  
Community Interactions ◽  
Web Based ◽  
Age Related ◽  
Depressive Feelings

Abstract Background Many older adults struggle with late-life depression, stress, and anxiety, especially when facing age-related transitions including retirement, relocation, and the death of a spouse. Given the consequences of depression among older adults, which include higher rates of suicide, timely interventions that help to manage depressive symptoms are essential. Objective The primary purpose of this study was to explore the perceived efficacy of an online program in improving subjective depressive feelings. Methods Older adult participants were recruited for semi-structured interviews (n = 24) in a web-based intervention that included interactive games and activities undergirded by a cognitive behavioral therapy (CBT) approach. Participants were asked to provide feedback about program features, including weekly module content, games, interactive activities and community interactions, and any perceived effects on their health behaviors and/or emotional well-being. Participants’ responses were analyzed using qualitative content analysis. Results Participants reported several gains, including developing the habit of forming ongoing, incremental goals, achieving wellness-related goals, and experiencing an overall positive shift in perspective. In addition, participants reported feeling greater gratitude, increased positivity, and improvement in mood. Featured games and activities helped to promote stress relief and entertainment, and mindfulness exercises were cited as the most helpful and/or enjoyable among participants. Participants expressed a preference for program content related to aging and aging-related transitions. Conclusions This study demonstrated feasibility of an interactive web-based intervention for older adults with subjective depressive feelings, while also providing important findings about users’ preferences for personalized, aging-related feedback.

The Mental Health of Visitors of Web-Based Support Forums for Bereaved by Suicide

Crisis ◽  
2015 ◽  
Vol 36 (1) ◽  
pp. 38-45 ◽  
Author(s):  
Jeannet Kramer ◽  
Brigitte Boon ◽  
Marijke Schotanus-Dijkstra ◽  
Wouter van Ballegooijen ◽  
Ad Kerkhof ◽  
...  
Keyword(s):  
Mental Health ◽  
Depressive Symptoms ◽  
Repeated Measures ◽  
Complicated Grief ◽  
Well Being ◽  
Self Report ◽  
Online Support ◽  
Mutual Support ◽  
Web Based

Background: Persons bereaved by suicide are reluctant to ask for social support when they experience feelings of guilt and blame. A web-based peer forum may provide a safe and anonymous place for mutual support. Aims: This study examined the mental health changes of visitors of two online support forums for persons bereaved by suicide and their experiences with the forum over 1 year. Method: Visitors of two forums completed self-report measures at baseline and at 6 and 12 months' follow-up. Repeated measures analyses were used to study changes in well-being, depressive symptoms, and complicated grief. Additionally, participants were interviewed about their experiences with the forum. Results: The 270 participants were mostly female, low in well-being, with high levels of depressive symptoms and complicated grief. Suicidal risk was high for 5.9%. At 12 months, there were small to medium-sized significant improvements in well-being and depressive symptoms (p < .001) and nearly as much for grief (p = .08). About two thirds reported benefit from visiting the forum. Because of the pre–post design we cannot determine whether a causal relationship exists between the form and changes in mental health. Conclusion: After 1 year some positive changes but a large group was still struggling with their mental health. Interviews indicate that the forum was valued for finding recognition.

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