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

ABSTRACT: There is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people.To 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.The 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.The 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.This 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.None.

SUBMITTER: Mitter N

PROVIDER: S-EPMC6094883 | biostudies-other | 2018 Sep

REPOSITORIES: biostudies-other

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

Mitter Natasha N Ali Afia A Scior Katrina K

BJPsych open 20180815 5

<h4>Background</h4>There is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people.<h4>Aims</h4>To 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.<h4>Method</h4>The new Family Stigma Instrument (FAMSI) was tested with 407 family carers, 53% of whose offspring had an autism spectrum disorder in addition to intellectu ...[more]

PMID: 30140444

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Project description:ImportanceSmall, geographically limited studies report that people with intellectual and developmental disabilities (IDD) have increased risk for serious pregnancy-related and birth-related challenges, including preeclampsia, preterm birth, and increased anxiety and depression, than their peers. United States-based population-level data among people with IDD are lacking.ObjectivesTo identify perinatal and postpartum outcomes among a national, longitudinal sample of people with IDD enrolled in public health insurance, compare subgroups of people with IDD, and compare outcomes among people with IDD with those of peers without IDD.Design, setting, and participantsThis retrospective cohort study used national Medicaid claims from January 1, 2008, to December 31, 2019, for 55 440 birthing people with IDD and a random sample of 438 557 birthing people without IDD. Medicaid funds almost half of all births and is the largest behavioral health insurer in the US, covering a robust array of services for people with IDD. Statistical analysis was performed from July 2023 to June 2024.ExposurePeople who had a documented birth in Medicaid during the study years.Main outcome and measuresPerinatal outcomes were compared across groups using univariate and multivariate logistic regression. The probability of postpartum anxiety and depression was estimated using Kaplan-Meier and Cox proportional hazards regression.ResultsThe study sample included 55 440 birthing people with IDD (including 41 854 with intellectual disabilities [ID] and 13 586 with autism; mean [SD] age at first delivery, 24.9 [6.7] years) and a random sample of 438 557 birthing people without IDD (mean [SD] age at first delivery, 26.4 [6.3] years). People with IDD were younger at first observed delivery, had a lower prevalence of live births (66.6% vs 76.7%), and higher rates of obstetric conditions (gestational diabetes, 10.3% vs 9.9%; gestational hypertension, 8.7% vs 6.1%; preeclampsia, 6.1% vs 4.4%) and co-occurring physical conditions (heart failure, 1.4% vs 0.4%; hyperlipidemia, 5.3% vs 1.7%; ischemic heart disease, 1.5% vs 0.4%; obesity, 16.3% vs 7.4%) and mental health conditions (anxiety disorders, 27.9% vs 6.5%; depressive disorders, 32.1% vs 7.5%; posttraumatic stress disorder, 9.5% vs 1.2%) than people without IDD. The probability of postpartum anxiety (adjusted hazard ratio [AHR], 3.2 [95% CI, 2.9-3.4]) and postpartum depression (AHR, 2.4 [95% CI, 2.3-2.6]) was significantly higher among autistic people compared with people with ID only and people without IDD.Conclusions and relevanceIn this retrospective cohort study, people with IDD had a younger mean age at first delivery, had lower prevalence of live births, and had poor obstetric, mental health, and medical outcomes compared with people without IDD, pointing toward a need for clinician training and timely delivery of maternal health care. Results highlight needed reproductive health education, increasing clinician knowledge, and expanding Medicaid to ensure access to care for people with IDD.

Dataset Information

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

Publications

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

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