Predicting well-being longitudinally for mothers rearing offspring with intellectual and developmental disabilities

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.

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

BJPsych Open ◽

10.1192/bjo.2018.39 ◽

2018 ◽

Vol 4 (5) ◽

pp. 332-338 ◽

Cited By ~ 7

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.

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

Intellectual and Developmental Disabilities ◽

10.1352/1934-9556-47.2.63 ◽

2009 ◽

Vol 47 (2) ◽

pp. 63-83 ◽

Cited By ~ 24

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.

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Aging With Intellectual and Developmental Disabilities: A Critical Examination of Supports for Healthy Aging

Innovation in Aging ◽

10.1093/geroni/igab046.866 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 225-226

Author(s):

Lieke van Heumen ◽

Kelly Munly ◽

Patricia Heyn

Keyword(s):

Older Adults ◽

Developmental Disabilities ◽

Interprofessional Education ◽

Healthy Aging ◽

Population Aging ◽

Well Being ◽

Critical Examination ◽

Intellectual And Developmental Disabilities ◽

New Normal ◽

Age Related

Abstract The number of older adults with intellectual and developmental disabilities (IDD) in the U.S. is expected to double and potentially triple by 2030. Despite this demographic urgency, there continues to be a lack of research directly addressing aging of people with IDD. Individuals with IDD have on average twice as many health problems than others without IDD, experience earlier age-related declines in health and function than the general population and are more likely to develop secondary conditions as they age. The increase in the number of people aging with IDD and the challenges experienced by this population have demanded new directions for research, practice and policy that promote social justice and improve this population’s health and well-being. This symposium brings together research that critically examines and calls for a “new normal” of supports for healthy aging provided to the population aging with IDD. The first presentation consists of a systematic review of healthy aging interventions for adults with IDD. The authors conclude that such interventions for adults with IDD remain scarce, incipient and sporadic. The second presentation critically reviews an interprofessional education model aimed to address the complex and unique needs of older adults with IDD and dementia. The authors provide recommendations for the future development of interprofessional education in this field. In the third and final presentation the authors offer further transformation toward a new normal as they outline future directions for research on aging with IDD that is informed by positive psychology and disability studies theory.

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The Relationship between Dimensions of Forgiveness with Mental Health in Mothers of Children with Intellectual and Developmental Disabilities

Journal of Education and Learning ◽

10.5539/jel.v5n4p15 ◽

2016 ◽

Vol 5 (4) ◽

pp. 15 ◽

Cited By ~ 1

Author(s):

Shahrooz Nemati ◽

Mir Mahmoud Mirnasab ◽

Bagher Ghobari Bonab

Keyword(s):

Mental Health ◽

Psychological Distress ◽

Developmental Disabilities ◽

Well Being ◽

Theoretical Implication ◽

Sampling Procedure ◽

Three Dimensions ◽

Intellectual And Developmental Disabilities ◽

Psychological Well Being ◽

The Relationship

<p>The aim of the current study was to predict mental health of the mothers of children with intellectual and developmental disabilities from the magnitude of their forgiveness. To fulfill the stated goal 88 mothers of children with intellectual and developmental disabilities by means of accessible sampling procedure, and Besharat mental health (2009) as well as Enright forgiveness inventories standardized by Ghobari Bonab et al. (2003) was given to them. Analysis of data using Pearson’s correlation revealed that among mental health (psychological well-being and psychological distress) and all three dimensions of forgiveness a positive relation was found. In other words, individuals who were higher in forgiveness were more satisfied in their mental health. Multivariate regression also revealed that 23% of variations in psychological well-being by affective and cognation, and 20% of variations in psychological distress by cognation and behavioral component can be accounted by dimensions of their forgiveness. Theoretical implication and practical application of the findings have been delineated in the original paper.</p>

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

American Journal on Intellectual and Developmental Disabilities ◽

10.1352/1944-7558-124.5.470 ◽

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.

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Social support, coping, and positive perceptions as potential protective factors for the well-being of mothers of children with intellectual and developmental disabilities

International Journal of Developmental Disabilities ◽

10.1080/20473869.2017.1329192 ◽

2017 ◽

Vol 64 (4-5) ◽

pp. 288-296 ◽

Cited By ~ 14

Author(s):

Elizabeth J. Halstead ◽

Gemma M. Griffith ◽

Richard P. Hastings

Keyword(s):

Social Support ◽

Developmental Disabilities ◽

Protective Factors ◽

Well Being ◽

Intellectual And Developmental Disabilities

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Psychological Well-Being of Children and Adults with Severe and Profound Intellectual and Developmental Disabilities

Health Care for People with Intellectual and Developmental Disabilities across the Lifespan ◽

10.1007/978-3-319-18096-0_113 ◽

2016 ◽

pp. 1401-1419

Author(s):

Fleur-Michelle M. Coiffait ◽

Alexandra T. Leedham

Keyword(s):

Developmental Disabilities ◽

Well Being ◽

Intellectual And Developmental Disabilities ◽

Psychological Well Being

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State Health Care Financing Strategies for Children with Intellectual and Developmental Disabilities

Intellectual and Developmental Disabilities ◽

10.1352/1934-9556-50.3.181 ◽

2012 ◽

Vol 50 (3) ◽

pp. 181-189 ◽

Cited By ~ 11

Author(s):

Sara S Bachman ◽

Margaret Comeau ◽

Carol Tobias ◽

Deborah Allen ◽

Susan Epstein ◽

...

Keyword(s):

Developmental Disabilities ◽

Health Reform ◽

Health Care Financing ◽

Well Being ◽

Financial Hardship ◽

Intellectual And Developmental Disabilities ◽

Fiscal Responsibility ◽

Mandated Benefits ◽

Family Advocacy ◽

State Financing

Abstract We provide the first descriptive summary of selected programs developed to help expand the scope of coverage, mitigate family financial hardship, and provide health and support services that children with intellectual and developmental disabilities need to maximize their functional status and quality of life. State financing initiatives were identified through interviews with family advocacy, Title V, and Medicaid organizational representatives. Results showed that states use myriad strategies to pay for care and maximize supports, including benefits counseling, consumer- and family-directed care, flexible funding, mandated benefits, Medicaid buy-in programs, and Tax Equity and Fiscal Responsibility Act of 1982 funding. Although health reform may reduce variation among states, its impact on families of children with intellectual and developmental disabilities is not yet clear. As health reform is implemented, state strategies to ameliorate financial hardship among families of children with intellectual and developmental disabilities show promise for immediate use. However, further analysis and evaluation are required to understand their impact on family and child well-being.

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