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.

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.

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.

Sibling Caregivers of People With Intellectual and Developmental Disabilities: Sociodemographic Characteristics and Material Hardship Prevalence

2016 ◽  
Vol 54 (5) ◽  
pp. 332-341 ◽  
Author(s):  
Rajan A. Sonik ◽  
Susan L. Parish ◽  
Eliana S. Rosenthal
Keyword(s):  
Developmental Disabilities ◽  
Adult Population ◽  
Social Characteristics ◽  
Service Needs ◽  
Intellectual And Developmental Disabilities ◽  
Adult Siblings ◽  
Material Hardship ◽  
Working Age ◽  
Nationally Representative ◽  
Sibling Caregivers

Abstract In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings without intellectual and developmental disabilities are increasingly taking on primary caregiving responsibilities. However, adult siblings have received little study generally, and sibling caregivers have received even less. We used nationally representative data from the Survey of Income and Program Participation (SIPP) to describe the social characteristics and material hardship levels of sibling caregivers, in comparison to the general working age adult population. This study finds moderate material hardship to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs. Implications for greater service needs are discussed.

scholarly journals EMOTIONS AND WELL-BEING IN LATER LIFE CHILDHOOD HAPPINESS, SELF-MASTERY, AND LATER-LIFE HEALTH

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S576-S576
Author(s):  
Haena Lee ◽  
Markus H Schafer
Keyword(s):  
Depressive Symptoms ◽  
Family Environment ◽  
Social Life ◽  
Successful Aging ◽  
Living Arrangement ◽  
Later Life ◽  
Well Being ◽  
Adult Health ◽  
Growing Up ◽  
Self Rated Health

Abstract Considerable work has documented that positive childhood memories, especially childhood happiness, predict better health among young adults. However, it is not known whether growing up happy has enduring health consequences across the life course. Using two waves of the National Social Life, Health and Aging Project (2010-2011 and 2015-2016; N = 1,937), we investigate the relationship between childhood happiness and changes in physical, mental, and biological functioning in later life. Childhood happiness was retrospectively assessed using a question: “When I was growing up, my family life was always happy.” Self-rated health, depressive symptoms, and frailty over a five-year period were examined to reflect changes in functional status. Childhood SES and living arrangement were examined to assess childhood sociodemographic background. Educational attainment, family support and strain, and self-mastery were considered as potential mediators. We find that, among other childhood factors, childhood happiness significantly predicts older adult health. Specifically, childhood happiness was associated with better self-rated health and lower depressive symptoms at follow-up, net of baseline health conditions. We did not find a relationship between frailty and childhood happiness. Unlike prior work, we found no significant effect of childhood SES on the measured outcomes. Associations between childhood happiness and self-rated health and depression were mediated by psychosocial resources including self-mastery and perceived social support from family members. This implies that growing up in nurturing, cherished family environment has the potential to cultivate social relationships and build resilience which could provide an important pathway to successful aging.

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.

scholarly journals Stigma experienced by family members of people with intellectual and developmental disabilities: multidimensional construct

BJPsych Open ◽  
2018 ◽  
Vol 4 (5) ◽  
pp. 332-338 ◽  
Author(s):  
Natasha Mitter ◽  
Afia Ali ◽  
Katrina Scior
Keyword(s):  
Developmental Disabilities ◽  
Caregiver Burden ◽  
Family Members ◽  
Well Being ◽  
Autism Spectrum ◽  
Self Report ◽  
Intellectual And Developmental Disabilities ◽  
Subjective Well Being ◽  
Good Reliability ◽  
The Impact

BackgroundThere is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people.AimsTo develop a self-report measure of stigma among families of people with intellectual and developmental disabilities and examine associations between family stigma and other variables.MethodThe new Family Stigma Instrument (FAMSI) was tested with 407 family carers, 53% of whose offspring had an autism spectrum disorder in addition to intellectual disability. They also completed measures of subjective well-being, caregiver burden, self-esteem and social support.ResultsThe FAMSI yielded a five-factor structure and had good reliability. Perceived family stigma, caregiver burden and subjective well-being were the strongest predictors of family stigma.ConclusionsThis instrument can advance our understanding of the impact of stigma on family members. It can also help us understand sociodemographic, psychosocial and contextual variables of both the carer and cared for person that may influence family members' experiences.Declaration of interestNone.

Satisfaction and Sense of Well Being Among Medicaid ICF/MR and HCBS Recipients in Six States

2009 ◽  
Vol 47 (2) ◽  
pp. 63-83 ◽  
Author(s):  
Roger J. Stancliffe ◽  
K. Charlie Lakin ◽  
Sarah Taub ◽  
Giuseppina Chiri ◽  
Soo-yong Byun
Keyword(s):  
Developmental Disabilities ◽  
Care Facility ◽  
Well Being ◽  
Intermediate Care ◽  
Intellectual And Developmental Disabilities ◽  
Community Based ◽  
Community Based Services ◽  
Day Program ◽  
At Home

Abstract Self-reported satisfaction and sense of well-being were assessed in a sample of 1,885 adults with intellectual and developmental disabilities receiving Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facility (ICF/MR) services in 6 states. Questions dealt with such topics as loneliness, feeling afraid at home and in one's neighborhood, feeling happy, feeling that staff are nice and polite, and liking one's home and work/day program. Loneliness was the most widespread problem, and there were also small percentages of people who reported negative views in other areas. Few differences were evident by HCBS and ICF/MR status. The findings document consistent benefits of residential support provided in very small settings—with choices of where and with whom to live—and to individuals living with family.

Sign in / Sign up

Export Citation Format

Share Document